Editorial note: Renny’s story chillingly outlines the misery of Dopamine Agonist Withdrawal Syndrome (DAWS). Below this we present data from RxISK’s SoS Zone showing rates of Symptoms on Stopping and related problems on Dopamine Agonists which fully bear out her personal experience.
I was prescribed Mirapex (Pramipexole), a ‘Dopamine Agonist’, in early 2012 for ‘Restless Legs Syndrome’. I took it for around 4-5 months but eventually decided to stop because it wasn’t working. I cut the dose down gradually and stopped altogether in September 2012. I must add that I suffer with Crohn’s disease and Type 1 Diabetes.
I went through a clear physical withdrawal which lasted a few days but then following this something else started. The symptoms were feeling like I had ‘flu, yawning, trouble sleeping, and total lack of energy. This lasted a few days. When this stopped, I was left with an overwhelming depression. The depression has lasted to this day with only occasional relief. On the few days I have had relief, I have felt perfectly normal and able to carry out my usual tasks but this is followed by another relapse and all the symptoms re-appear.
It’s as if I have no control over my own body
The depression has not lifted (apart from the odd day) since I came off the drug. This is NOT a natural depression. I have had a slight tendency to get depressed all my life but this is like nothing I have ever felt before. It is as if my body is controlling itself and I have no control over it.
I was 99% certain Mirapex caused this and then in my investigations into ‘Dopamine Agonists’ I came across a condition known as ‘DAWS’ – Dopamine Agonist Withdrawal Syndrome’. This is apparently where following withdrawal of dopamine agonist drugs, like Mirapex, the brain doesn’t re-start producing its own dopamine. The main symptoms of DAWS are anxiety, panic attacks, depression, agitation, irritability, dysphoria, insomnia, and fatigue.
With me, it is the depression that has hit the hardest. It will not subside. I have no control over it. I have been shown many techniques for controlling depression and for a normal depressed person, these would work in most cases but, with DAWS, there is NOTHING at all that will stop it apart from going back on the drug. This I will not do unless I have been permanently damaged by this drug. I am beginning to wonder if this is the case.
I have coped with Crohn’s disease and Diabetes pretty well and, most of the time these don’t get me down. I just accept them and control the conditions as best I can. I have had Crohn’s for 36 years and Diabetes for 27 years and, at no time have I got particularly depressed over these diseases.
Unbearable depression & feeling suicidal
In the week of 16th– 23rd Feb the depression became unbearable and by the time Friday came, I was suicidal. I called The Samaritans who kindly listened and agreed to phone me back the next morning as I had told them I wanted to die. I didn’t feel much better the next day, very tearful but, took the call and just spoke about how I was feeling.
I have made many attempts to help myself through this including getting in touch with old friends and arranging a meet up with an old girlfriend. Unfortunately this did nothing to lift my mood. I have been doing voluntary work and have quite a few opportunities to mix with people so it isn’t lack of company that is causing the depression.
While the depression is at its worst, I cannot stop myself crying and this happens anywhere and at any time. This has been the most brutal experience I have been through in my entire life and shows absolutely no sign of ending. I refuse to take antidepressants as they have not been proven to have any benefit for DAWS and I have no wish to become addicted to another drug
All in all, my ongoing experience with DAWS has been the most brutal, demoralising, relentless, life endangering experience I have ever known. Most days I want to end my life just to escape it. Because I cannot seem to find proper information on how long it is supposed to last, I find myself running out of hope.
Please share a similar experience
I would like to find other people who have been through DAWS and survived! There is very little information on how long it lasts. The only information is about the symptoms. The nearest I have come to finding a similar situation is on a forum called ‘Social anxiety support’ in which the person describes his attempt to come off Mirapex. It is worth taking a look because it confirms how difficult this can be.
If there IS anyone out there who has been through a similar situation, I would be grateful to hear from you.
Data on DAWS
The table below fully bears out Renny’s view of DAWS. Dopamine agonists which are used for Parkinson’s disease, Restless Legs Syndrome and other problems are very similar in their mode of action to stimulants like methamphetamine and dexamphetamine. They case a range of addictive behaviors from sex addiction to compulsive gambling. The table below shows reports of abuse and addiction consistent with this, but it also shows Symptoms on Stopping as in Renny’s case. No-one knows, as she outlines, how long this goes on for or what steps can be taken to make a difference. All reports would be very welcome to both her and us.
| Drug | SoS | Abuse | Addiction | Dependence | Intoxication |
|---|---|---|---|---|---|
| Bromocriptine Parlodel | 2 | 6 | 4 | 3 | 15 |
| Cabergoline Dostinex | 8 | 12 | 4 | 4 | 31 |
| Pergolide Permax | 4 | 11 | 6 | 6 | 5 |
| Pramipexole (Mirapex) | 51 | 89 | 87 | 73 | 154 |
| Quinagolide Norprolac | 0 | 0 | 0 | 0 | 0 |
| Ropinirole Requip | 63 | 42 | 48 | 48 | 124 |
| Rotigotine Neupro | 7 | 50 | 9 | 9 | 15 |
| Total | 135 | 165 | 158 | 143 | 344 |
annie says
To be perfectly honest, Daws syndrome, is not far apart from ssri syndrome.
Syndrome, where did I get that word from…
Renny, is suffering badly, but there are just a handful of us, who are also suffering badly from ssris.
What is the difference?
Only the expert will tell us…
Mixtures made up in laboratories, take me back to Frankenstein…..ie “a grotesque creature is produced in an unorthodox scientific experiment.’
Renny says
Hi Annie,
Yes I know about SSRI syndrome and the symptoms are pretty much the same, its just that DAWS seems to last an eternity and I have actually read about some people never recovering!
You are right about Frankenstein, a lot of these drugs are not tested properly, how come they didn’t find out about what Mirapex could do to certain people (it doesn’t happen to everybody who takes it) by testing people with varying personalities? Money and profit is the answer!
Nikhil says
Even SSRI issues like PSSD (Post SSRI sexual dysfunction) seem to last eternity. Paroxetine for 18 months caused this when dosage was reduced from 25mg to 12.5 mg. Even after 6 years for NOT taking any SSRI, hasn’t helped.
Shirley W says
Hi Renny,
I almost wish I hadn’t found this site. I’ve been on Mirapex for over 15 years for RLS. Several months ago it began moving up my body into my neck, chest & arms. No one EVER mentioned this being a possibility. They call it “Augmentation” & the only hope is to go through withdrawal. I’ve survived a heart attack, 2 years of bed rest for diabetic ulcers, cancer, bone infection resulting in amputation & I recently coded from Septic Shock Syndrome. I’m a Survivor so wasn’t too worried til I got on here! I’ve also cold
turkeyed a 30 year 2 pack a day habit as well as 75 mcg Fentanyl patches but now I’m starting to get scared from all the comments on here. I did do some research & will take OxyContin during it. He also wants me to go on Methadone afterwards which I refuse to do. Somebody PLEASE give me a glimmer of hope!🙀😿
Peggy herman says
I was on mirapex for 14 yrs, for rls. It took me about 1 1\2 yrs yrs to titrate the drug and discontinue, which was done in Oct. 2018.yhe continual reduction caused many side effects; extremely high blood pressure(200/100), severe agitation and uncontrolled rage. With my own research, I found that iron supplements, geritol, Nova ferrum, magnesium threonate, b12 complex, lions mane mushroom extract powder, and occasional maraguana gummies and cbd oil has helped me successfully get off the drug. I have opted to do it as naturally as possible.
My blood pressure and anxiety levels have gone back to a normal range.
Sleeping is still a challenge but I am managing.
Wish all those who are considering the discontinuation of this horrible drug, best of luck.
Angela Kirk says
I’m in tears right now I’ve taken mirapex for 13 years found out arthritis is what I really have and mirapex doesn’t help anymore so I looked up withdrawal symptoms OMG I haven’t slept in 5 years except 3 hours or less Every symptom of DAWS I have 😢😢 and now excuse this WTF am I going to do? Severe panic attacks wheezing ect . Advice???? I’m never taking it again I’m going to tough it out not prolong my torture .
PinkInk says
A little freaked out by your testimony. I have only been on Mirapex a few months, but have experienced uncontrollable rage, agitation, suicidal ideation, etc. I have been trying month after month to tell my psychiatrist about the depression. The other day he said, “so, see you in 3 months?” which is our longest time ever. Neurologist gave Mir to me and I will be calling tomorrow. (I am nauseous as heck.)
Vera Hughes says
Hello Peggy:
I ready with interest the natural supplements you have taken to help alleviate the awful side effects of DAWS. Would you be able to share what dosage you recommend for each of the supplements listed? I am currently on day 5 and have started this awful deep aching in my upper legs and lower back. And, like many, have not slept more than a few hours in days.
Thank you.
Vera
Lisa says
I’ve been taking 0.125mg of Mirapex nightly for 7 or 8 years and only recently learned that it affects memory. I’m 64 and don’t need or want anything adding to the changes that come with aging. I started thinking about weaning off Pramipexole. This sounds like a scary thing to do! I experienced discontinuation syndrome when I stopped taking Effexor for a sleep study. It was harrowing–I cried uncontrollably for two weeks and felt suicidal. Physicians who have no personal experience with the drugs they prescribe should be locked in a room with one of us as we try to get off these meds. I wish I could offer at least one good suggestion. We’re left to do the research on our own. Peace and sympathy to all.
Ashley says
I was on requip and Mirapex for 20 years until the augmentation became unbearable. I also did not want to try methadone but have now gone on. The dose is minuscule and it has saved me! Give it a chance – it sounds horrible but just might be the best thing you ever did! Best to you. A
joyce smith says
been on mirapex 25 yrs worked great
dr suddenly took me off
in 24 hours depression hit
said to friends
I dont know who I am, I’m not me
I was just a body filled with horrible muscle spasms, could sleep could not think fatigue overwhelmed me cried, what us happening I screamed
it’s a little better now but not a lot cry at drop of hat
I want myself back
Jane H says
Shirley, don’t be afraid of methadone. The world’s best experts are endorsing it, and the dose needed is very small. It is a good drug, but we have a very twisted view of it because of its use ‘on the street’.
I came off pramipexole after many years. I am now on 6mg methadone – I have no symptoms and I sleep all night long for the first time in decades.
I do have persistent depression, possibly from pramipexole withdrawal, but certainly not from methadone.
Dr. David Healy says
Jane
Is there any evidence for this use of methadone – it doesn’t come up on google as a treatment for DAWS
D
Dori says
Yes both Methadone and and Buprenorphine and Naloxone are used when removing patients from Mirapex. Go to http://www.rls.org or call 512.366.9109 for research studies. Hope this is helpful
Drea W says
Dear Jane, your comments are a ray of hope after a very dark day. I have suffered from RLS for 30+ years. Started Mirapex in 2000. Typical increasing dosage until the discovery of augmentation for RLS patients. I have torturous symptoms in legs and arms 24/7. Went though awful DAWS. I see a renown neurologist specializing in RLS. Been through all the medications some didn’t work some worked for a while. Have resisted methadone but it is literally last resort except for suicide. Which is an option because I simply cannot live like this. Had a video appointment with the doctor today and he confirmed what I suspected. My augmentation symptoms are permanent because the dopamine has damaged my brain. So I took my first dose of methadone tonight. It is 3am and I am standing up beside my bed typing this on my iPad. The Doctor said it can take 3 or 4 days to work.please pray for me.
Katie says
Careful with methadone, it stores in the bone marrow and caused me the worst joint pain I had ever felt in my entire life. Which was completely counterproductive. And there will probably come a day when you’ll have to go through the detox symptoms for the methadone too
Steve Breen says
My doctor told me to throw the sifrol pramipaxel away because because of my sexual behaviour.
I just stopped taking it.
That’s when I attempt ed suicide, my partner left me
Lynn Wise says
I’m hoping that by now you’ve found relief from your DAWS. My husband has been suffering from whole body shaking and jerking since he stopped taking Mirapex cold turkey (he took it for 30 years to treat RLS). The upper body shakes and jerks begin each evening and last for 3 hours to all night. He has seen neurologists at Scripps in San Diego as well as a neurologist at Cedar Sanai. Is there a support group for fellow sufferers. My husband is deeply depressed as his sleepless nights and chronic evening shaking episodes have become the hopeless norm.
elle says
Hi Renny,
I came across your post. I am experiencing virtually EVERYTHING you described going through. My experience is due to withdrawal from a low dose but long term use of Adderall for “adult onset ADD”. I have only recently learned that many professionals due not believe in “adult onset ADD”. I wish someone would have warned me that your Joy receptors are slowly extinguished with longer term use of this drug. I do not want to repeat all that you said you went through with your withdrawal from Mirapex. However, when I read all that you were experiencing I felt like I finally understood that I was suffering from DAWS.
I hope that you are experiencing some relief in your suffering.
Paul says
Shirley, Peggy and Ellie,
I have been on Mirapex since 2014 every since a knee surgery. Shortly afterwards I developed strange leg jerking diagnosed as Period Limb Movement Disorder that would show up 30 minutes after I went to bed. Some relief came from walking a couple of miles for a few hours, only to reappear again. I was placed on Mirapex by the Cleveland Clinic. Since then, I have tried several times to stop the medication, but the symptoms return. There appears to not be a medication to replace Mirapex so it appears that I am doomed to this path. A side note, the Federal Aviation Administration discovered my use of Mirapex and have permenantly revoked my license. When it rains, it pours.
Paul
Lynn Wise says
I see that this is an old post. My husband suffers from this period limb movement. Please contact us if you have any hopeful information, or if there is a supportive group of persons who might have some helpful suggestions. My husband is deeply depressed. Thus far, the neurologists from Scripps and Cedar Sinai have loaded him up with Gabapentin, Ambien, and Adivan. The sleepless nights and horrific hours of shaking persist.
Lynn
Camille Nixon says
Hi, Renny, My husband has tapered off of Mirapex and is very depressed…the depression seems to come out of thin air…at times he is fine, and then, boom, a minor problem will send him into a tailspin, crying, angry, feeling like everything is hopeless. I cannot help him when he is this way, he will bang on his thigh and just say no, no, no while sobbing. It has been 2 months since he has stopped the Mirapex and he is, still, not OK. Did you ever start to feel better? I surely hope so because everyone deserves to live without this depth of depression.
Sooze says
Hi everyone, I appreciate this thread is quite old now, but I am coming off Requip and Parampexole – I’m on day 9 of tapering down, and I feel like I’ve been hit by a truck. I thought I was getting away with it because generally I have felt okay up until now. I have RLS and was prescribed the meds around two years ago, but my impulse control has got to a stage where I am gambling excessively and feel I have no control over it. Many days I could have quite happily carried on gambling at the expense of my job, family etc. So I recognised with the help of my GP and therapist that I need to try to come off them. Today I feel achy all over, last couple of nights really erratic sleep, no energy, demotivated, raised heart rate…does this all ring true to you. Many thanks for any help/advice you can give me.
JENN Jones says
I have currently trying to get off ropinirole and it’s horrible. I’m on day 5 of no meds and it feels like my heart is going to beat out my chest, my hands are shaky, I can only sleep with lots of NyQuil and I’m very agitated. I really hope it gets better from here.
RP says
I have DAWS that I seemed to finally beat after 7 months. Then I had hip replacement surgery. I had to quit cigarettes before surgery. It brought the DAWS back with a vengeance. Between the anesthesia, pain meds, quitting cigarettes and stress of surgery itself, I am far worse than I was over those 7 months. The worst part this time around is instantly feeling 200 degrees and pouring sweat all night and shaking uncontrollably with rigors. I’m surviving on minutes of sleep recovering from major surgery. I quit the pain meds 4 days ago. I’ve been using the nicotine patch. I keep getting worse. No post OP infection. Has anyone else had a similar situation with DAWS and surgery, anesthesia or quitting cigarettes? One withdrawal kicks off another. Should I continue with the patch? Or is it only prolonging the DAWS?
Shirley says
Renny’s account of DAWS sounds like she’s been reading my thoughts.
I had been on Mirapex/pramipexole 1.0 mg since 2005 for rls under my go care. I had no idea that my complusive behavior could be a side effect until I developed gambing problem leading to financial irresponsibility. While searching for info about gambling additictions a page came up on side effects of Mirapex.
Several had been part of my life for years. The gambling was new after going on a cruise 1/2020 with friends 6 months after my husband died 5/2019.
After cruise, Covid19 hit shutting down all my normal activities. In June 2020 casinos opened up. There are 5 within 1 hour of me which Several neighbors invited me to join them as our clubhouse & facilities were still closed per Covid regulations.
When my finances got in trouble & I discovered my addiction, I went to my doctor who prescribed Mirapex to ask to get off it. She had not heard of the side effects, but had me start cutting back in 1/2021. Immediately withdrawals started. I saw her every 4 wks & cut dosage in half every 8 weeks. Now down to 0.125 mg every other day.
The DAWS sx is still daily. Like Renny, if this is how I’m going to feel then I just want to give up.
Some mornings are bearable. Most after-noons/evenings are not.
Just wondering if it ever gets better?
Annette says
I have been through DAWS twice now. The first time I didn’t know it was it was by the time I found a good movement disorder specialist my symptoms were so complex that we started from square one. The doc had to put me on mood stabilizers I was so severe I couldn’t eat drink defecate not cry etc. and I thought it was the Parkinson’s or a reaction to a drug. Let me start back a little bit further and say I didn’t think I had Parkinson’s to begin with but they told me I did. The second time I had doors I finally looked up for myself I could track it to Mirapex withdrawal. Even though it was withdrawn over months it did not seem to make a difference in my case. I again lost my mind, Changed my personality. I couldn’t get out of bed again or eat all the things the same as the first time. Had to relearn how to walk after four months, also lost 40 pounds during that four months. Found articles after much searching about this condition. I am now at five years and just starting to get my real personality back. I have never felt anything other than poisoned by these drugs and wonder if I didn’t even have Parkinson’s in the first place and maybe it gave it to me. Very unsteady ground to be standing on. I’m 63 years old and I’ve been diagnosed with Parkinson’s for over 10 years. What did they do to me what did they do to you?
Jeff says
I have been one of those rare sad souls who did indeed get sucker punched by DAWS. I stopped my Ropinrole about 8 months ago and I have lived through pure hell. I augmented for about 2 years before stopping the Ropinrole and this is where I am at now. I have been saved by using low dose therapy of Oxycodone but it still leaves me tired and distressed. I am assuming for myself and praying, that this hell will be over in a year or so and not be permanent. If anyone reads this post please remember, if you begin to augment on a Dopamine Agonist drug, especially those used specifically for RLS, discontinue the usage of that drug immediately. If you do not as I did, you will experience a living hell for too long a time. Beware of this syndrome!!!!!
Beverley says
Hi Jeff. I would be very interested in talking to you, or emailing. I have been taking Sifrol and Cabaser for about 4 years, for Restless Leg Syndrome. The mixture proved to be very good but I now feel they are passed their use as symptoms are now returning. I want to stop both drugs, but not at the same time, can you give me any advice. I would. Really appreciate hearing from you.
Cheers
Bev
Jeff says
Hi Bev,
Let me know how you are doing. I am still in the battle of my life after 2 and a half years of DAWS and my recovery is still ongoing extremely slow.
Angela Kirk says
Beverly I am cold turkey off mirapex I have taken for years . I’ve been in bed for 8 days with a fever about 99 to 101 I’m feeling better , but still feverish . CBD oil has helped me thru . By no means is it easy I’m suffering. But improving without CBD I don’t think I could do it
BOBBY says
I am coming to the end of a 60 month withdrawal (2nd. try) from PRAMIPEXOLE.(First try I was taken to hospital with palpitations)
It is hell on earth and the Specialist team of Doctors monitoring my progress don’t know what happens next.
I took PRAMIPEXOLE for 15 years
I would rather die than go back onto Dopamine Agonists after I finish withdrawal in June 2018.
I have dropped meds in 10 increments over six week terms since May 2017.
I dissolve tablets in worm water to dilute and then reduce dosage.
Angela Mortimer says
I had been on pramipaxole for several years for restless legs syndrome. My symptoms became much worse and I found out about Augmentation. My doctor wanted me to carry on with pramipaxole, saying it was the best drug for the condition. I said I wanted to stop it and she said it was my choice. If it hadn’t been for the advice fro an o-line forum, I would have stopped it immediately. As it is, I have started to reduce slowly, but my symptoms are even worse and I haven’t slept in days. I cry for no reason and I am concerned that it may never get better.
Ricky Rawlins says
Try klonopin to come off ropinirole ,it’s the best thing for rls ,take 1 mil b4 u go to bed.its addictive but so is a honey bun u can tapper off easily if u do it right.
Dr. David Healy says
Klonopin can be easy for some to come off and terrible for others – rather like dopamine agonists. It might work for some but is not a general answer.
DH
Dan says
Huge huge difference. SSRI discontinuation syndrome, specifically those that are pretty short acting(prozac) cause alot of discomfort. However, they are mainly psychological in nature(rebound depression, anxiety)
DAWs is both psychological and physiological for most people, especially when one has taken any kind of medication that predominantly impacts the dopaminergic system, be it receptor, neurons, neurotransmission,etc..
Dopamine agonists as well as stimulants that reuptake and release dopamine cause severe pain when discontinued abruptly. Aside from terrible nausea, cramps, restless legs, there are many psychological symptoms you do not feel when stopping SSRI’s abruptly. Cravings, a common sign of people withdrawing from drugs of abuse is common with dopaminergic withdrawal. Extreme dysphoria(different than depression) anhedonia, overall restlessness, akathisia, are all extremely difficult WD symptoms to go through.
SSRI’s while I agree are uncomfortable for many people either taperin gdown off them or going cold turkey is not at all like DAWS.
Heidi says
I beg to differ. SSRI discontinuation syndrome is ABSOLUTELY NOT merely psychological in nature. People suffer debilitating physical effects and severe dysphoria. It’s not a rebound of depression and anxiety. Many who were put on these drugs for reasons other than depression or mental health issues suffer the exact same effect when coming off. The symptoms we experience are the very same as DAWS and can last a very long time.
I’m at 15 months off my last dose of an SNRI (previously had SSRI’s) and have yet to fully recover. My symptoms have included tinnitus, light and sound sensitivity, gastrointestinal issues, headaches, flu like symptoms, lower back pain, peripheral neuropathy, brain zaps, akathisia, chronic fatigue, insomnia, hair trigger rage, emotional lability, anhedonia, brain fog, memory loss, frequent suicidal ideation, achy joints, severe itching, dizziness, and more. I am not alone. There are thousands of us with the exact same symptoms. I never took a dopamine agonist.
Belinda Hoyle says
I had most of those symptoms as well as hallucinations. Thankfully a year and a half off of Cymbalta I am finally free of withdrawal symptoms.
Caroline says
Dan, you’re wrong about the cause of SSRI discontinuation symptoms. SSRIs change the brain, physically. It’s absurd to pretend there would be a reaction to their discontinuation. In some people it’s mania, especially when Effexor is withdrawn.
Jamal says
Sorry to hear what you are dealing with. What I think the problem here is your body has a lower level of dopamine receptors, so any dopamine that goes through your body has only a few select receptors that it can actually attached to, which is most likely why you feel the way you do. I believe your medication really down regulated your dopamine receptors. You should try to find ways to increase your dopamine receptors naturally like intermittent fasting and drinking green tea to name a few, but there are plenty more ways to increase your dopamine receptors naturally. It does take a while for them to recover back to baseline especially considering the potency of your dopamine agonist compared to others. I pray you feel better soon.
JAVIER lopez says
Hi Annie
I hear you Annie I am so sorry I seen so many doctors for this problem did they finally told me that I’ve been a guinea pig they tried almost everything and nothing helps they finally kicked me out the only thing that really helps for me is go swimming in very cold water very cold water therapy takes away my depression at least for a day but next day is back so I guess we have to hang in there gridlock Annie
Forest Kinnett says
I need help. I have been taking a higher dose of Neupro at 6 mg for many months and have developed compulsive disorders in spending, sex and especially gambling. Since April 21, 2022, I went from this careful financial planner to this crazy gambler that has lost his life savings and maxed out all of his credit cards. Now, I have faced with the task of coming off of this medication. My options are cold turkey… with the hope of resetting my baseline dopamine, or tapering off the medication and possibly facing this compulsive behavior for the rest of my life.
And then I read this article.
I am terrified of my next steps. But on Dec 15 I have a two week break in my teaching and plan to implement the end of using this drug permanently.
Do you have any advice? What are the risks of cold turkey vs. tapering? Is it worth it? I live alone and the thought of fighting this seems overwhelming. Please… if anyone is reading this… reach out to me!
Lawrence Spackman says
I had been on pamprazamolle for years for my restless legs&they the legs were fine with 2tablets a day before bed.BUT I gambled all my money from sale of house &a lot of my superannuation. Itwas a compulsive gambleron race horses.unknown to me caused by pamprazamolle.i also had hallucinations&still do.what is the best option for my restless legs apart from exercise daily??
michael says
I’m suffering from DAWS as well. I’m not feeling that well today so I’m not going to write much. But one thing that used to get right down to the problem and help was Cyproheptadine, I be live it helped through its 5ht2c antagonism. When this receptor is blocked dopamine release is disinhibited. But in my case id tolerant to adose every 3 days and over a period of like 4 months I got tyo an extremely high dose and had to stop taking it. But my mood progressively ghot better and better while I was on it. I’ve now been off it for over 2 years and hve slowly regressed back to being dysfunctional and sduicidal feeling.
I have talked to someone on socialanxietysupport.com as well and he used to benefit from Mirtazipine, it works like Cyproheptadine does in many ways. But recently I talked to him and he had been doing well with 200-250 mgs of Lamictal. He said lower doses were useless. So I’m now taking it but the dose has to be titrated slowly. So I’m only on 50mgs at the moment with no effects from it so far.
I have been suffering from this since the end of 2009.
joyce carter says
what dose and frequency of the Cyproheptadine did you use for it to start to work?
Michelle Jackman says
I wish I could have stayed on Lamital but it made me itch all over. I am trying to wean off of Ropinerole but can’t find anything to use to get off of it. My RLS has ramped up so horribly that there are times that I would shoot myself if I had a gun. No one deserves to feel this way. IF anyone has any tips on how to get off of the Ropinerole please feel free to share with me those tips.
Darcy says
I’m just coming off Pramipexole… there was a mix-up with the pharmacy and I didn’t have it for 3 days, so I was forced to wean off. I thought this is my chance to get back to my old baseline, and see if I could survive on Tylenol #3 for my RLS like I used to, and/or try some homeopathic remedies. It’s been about 10 days, and my symptoms are terrible! I’m hoping and praying this is NOT my new baseline. It’s worse than it ever was, by far. I’m not having all the other symptoms everyone has mentioned… but my RLS sensations… wow. It’s so bad I’ve considered going back on methadone, which made me clinically depressed… three times. Sorry you all are going through such horrible misery.
brooks says
i have been on pramipexole for 16yrs slowly increasing the dose to max dose of 4.5 then 4yrs ago i got postural deformities. i was never told that this drug could cause it.
the only way i could get off it was to have dbs. they still never told me me that it was the drug causing it so i thought it was my parkinsons. i am improving slowly and now off the drug. i have only just found this informayion and wuld like to know how long they have known about this terrible drug and what it can do to some people.
have you got any postural deformities while taking this drug. please reply we need to do something about this
Fred
Chris says
I have been on Pramipexole for 20 years. My back now has a twist in it and I am starting to get a dull aching pain in my hip joints. Until I saw your post I had not heard of anyone getting these symptoms. Is there anything this drug doesn’t cause? Except good health. With all the fuss about the horrors of drugs and booze it is surprising pramipexole is still legal. I hav e tried a lot of drugs in my life but the only ones I have had trouble with are the drugs you get on prescription!. In my experience absolutely nothing comes close to getting off Pramipexol for the sheer horror qf the experience
michael says
I actually have post SSRI sexual dysfunction as well. 2 years after being off ant depressants my libido s well as me emotions never came back. So I took Mirapex to try and help. For about a month I experienced icreased sensitivity to stimulation ith zero effect on my mood. Then one day its effects reversed and ibecame impotent and unable to feel pleasure in just about anything and everything. Like you I also ferl so out of contro of myself and my life.
Renny says
Hi Gillian, Thanks for your reply and for your support.
Since I wrote about my experiences nothing has changed. I finally went to see my doctor who acknowledges that I have a chemical imbalance (caused by the Mirapex) and suggested anti-depressants, I told him that, because I had become so desperate to get rid of this feeling, I would only take a drug that wasn’t a dopamine agonist but would help me start producing dopamine again. He suggested Wellbutrin (Bupropion) because it is a dopamine reuptake inhibitor so, I gave in. I am ten days into the drug and waiting for the side effects to go (anxiety) and for the drug to work, this is supposed to take around 4 weeks so, here’s hoping.
I’ll keep you posted
Jacob Dean says
Hi Renny, do you have any updates?? I know it’s been years but please respond. I need hope!
annie says
Renny
You are brave, intelligent and aware and the fact that you are talking about it means that you are on your way……
I compensate with exercise working outside every day, and walking my dog. It clears the mind, loses a lot of angst, gives your mind time to sort itself out and most of all, changes the focus of thinking about ‘Frankenstein’ experiences and all of us little Frankensteins, and when the cloud of drug harm lifts then the world is truly a wonderful place, as it was before…this is a process of mental thought patterns but the positive always outweighs the negative and I try hard to maintain my grip….on the situation.
I always admire honesty, which we are and others aren’t, so thank you for sharing your Daws story.
Oh, and one last thing. Being a person of enormous optimism, myself, what good has come out of all this?
If we can hack it, then we might end up in a better place than before. It’s just a question of controlling your thought processes which have been rewired and twisted, so once you totally understand that concept, then normality becomes normal again.
And, what is normal, anyway.
And, why did we allow the whole pharmaceutical and whole medical chain to assault us.
And, who is grasping the corner and slowly and surely turning it all around and making it all better……nuff said.
I look forward to hearing about how you now make a seismic shift and how it all gets better for you. Not easy, but certainly not impossible.
It has to get better because it cannot get worse….it has to get worse before it gets better.
Up and Adam (sic) – at ’em – war phrase to get troops motivated and inspired to battle…….
Carpe diem and loads of luck with your quest for tranquility = it’s all in the mind…and who does our mind belong to…quite so.
Renny says
Annie, Thanks for your words of encouragement. One thing I have found having DAWS is getting people to believe you is virtually impossible, everybody I have encountered thinks they know the answer…a sort of ‘man up, pull yourself together’ attitude but, they haven’t experienced it, they don’t realize the brain has been damaged, possibly permanently. Mine has showed no sign of improving and I have had to finally give in and take the dreaded anti depressants which I never wanted to do. I am taking Wellbutrin which works on dopamine in the hope it may restore some normality. Renny
Keith Rennie says
Hi Renny, I hope you don’t mind me jumping in on your conversation. I was diagnosed with a pituitary Tumor in 1999, I was put onto Bromocriptine twice per day, which I admit caused me no real problems, with the exception of really bad constipation,I took this for about 8 years before changing to cabergoline. This I was told would be a lifetime thing, four years ago I changed to a different hospital, the endo there told me I didn’t require medication and took me off with immediate effect that day, saying there weren’t any side effect, in fact I went through hell, and continue to do so today, so much so that my own GP put me back onto cabergoline 6 weeks ago, things got immediately worse, the next day I was severely constipated, but I continued for about six weeks, until I had so many side effects, the worst the feeling I would collapse at any second, stomach pain, acid reflux from hell and joint pain, so much so I decided to take myself off it. This drug was a nightmare for me.
Lori says
I had elevated prolactin (likely a pituitary tumor) and was put on Cabergoline, as well. I’ve had horrible withdrawals like those listed form the original poster, although I didn’t have any major side effects on the meds. I found this study that concludes that B6 supplementation has a similar effect of lowering prolactin as Cabergoline. I’m not sure if you have a prolactinoma or something else, but increasing my B6 has helped so much with my mood.
Taylor Anthony says
Hello, I know I’m late replying to this thread and I hope it’s still active. Can you tell me how you are feeling now? Did you symptoms get any better? I’m going through a very similar situation as you and I am looking for as much information as I can get. Thank you
Johanna says
There are a few researchers looking at this in an honest way! Found this article by Melissa Nirenbaum & colleagues in NYC:
http://archneur.jamanetwork.com/article.aspx?articleid=799048
Maybe one of the good doctors here should drop her a line with a link to this RxISK Story? Contact info is on the article; click on Author Information.
They treat patients with Parkinson’s disease and I think that’s an environment where they talk about the pros and cons of strong drugs more frankly – it’s a tough disease, and just about every drug that helps it, also has a nasty downside. But Nirenbaum also has an article in press about a patient who took this stuff for RLS.
Thank god I’ve not had to deal with DAWS but the effects sound very much like withdrawal from speed – and I have been there, courtesy of Adderall medically prescribed as an add-on antidepressant. Desolation, would be the word I’d choose – a feeling like an open grave at times. It did eventually get better but it took over a year, and not a day went by that I didn’t think of the stuff.
During that time I hung out online with some good people at http://www.quittingadderall.com . Might be worth looking at their site. Amphetamine, methamphetamine and cocaine are all dopamine agonists in their way. I’ve heard that the stronger the supply of meth on the street, the fewer addicts recover and the longer it takes for those who do make it. Mirapex may be on a par with the strongest meth as far as addiction. Dr. Nirenberg seems to think I’m right; she compares DAWS to kicking speed and cocaine…
Lawrence Marcedes says
Hello Renny,
There is a book entitled “Mental and Elemental Nutrients,” by Carl C. Pfeiffer, Ph.d, M.D.
copyright @ 1975. (ISBN: 0-87983-114-6). Thirty years ago, my eldest sister was diagnosed
as schizophrenic. She came to stay with me as she was having her fourth nervous breakdown.
She had been on heavy pyschotropic drugs (prescription drugs) for ten years previously. Through the help of a nutitionist friend and megavitamin therapy (outlined in the above book)
we were able to restore the chemistry in her brain so that she could function normally. She
has been off all prescription drugs for the last thirty years and today (at 74 years old) she is
still employed for 32 hours a week at WalMart. The human body is self healing. If you provide
the right environment, it will restore you to a healthy state of being. I truely believe that this
is true for any disorder. My wife has been diagnosed with Parkinson’s Disease within the last
year and she is currently taking ropinirole and leva dopa. Unfortunately, I haven’t been able
to convince her concerning my philosophy of health. My worry is the damage that these drugs
are doing to her brain. Your information concerning the withdrawal symptoms is significant
and my fear for her is that unless she initiates a change in her program, I have little hope of
any recovery. Since Parkinson’s Disease has to do with the brain not functioning correctly, I
believe Dr. Pfeiffer’s program of restoring the brain chemistry could help your situation
significantly. It took my sister one year of following his program to recover her health.
Best Wishes,
Larry
Renny says
Hi Larry,
Thank you for the information, I will definitely try to check this book out as I would much rather heal the damage done to my brain by Mirapex in a more natural way than the way my doctor is trying to heal it – by giving me another drug! I do not want to be taking any drugs whatsoever and, although the drug (Wellbutrin) is helping slightly, I get nasty side effects from it….there’s always a price to pay with drugs!
Michael says
I’ve wondered if a bullet would be the best thing for my DAWS? Me, psychiatrists, pharmacists, nurologists and regular doctors don’t know what to do. So heck, maybe a bullet will be good for my brain!
Hell this site isn’t going to do me any good. Reading other peoples stories might be helpful to someone with a decent brain left. Not for me though. I’ve tried contacting Peter Breggin, hoping he would have some special insight as to what to do, but over the past 2 weeks he hasn’t returned my Calls or emails. I doubt he’ll know what to do anyway. Its just wishful thinking.
And the most rediculous thing is that once I’m gone, they’ll say “well he just needed an antidepressant!” HAHAHA its so funny!
Larry says
Hi Renny,
Thank you for your response to my suggestion. I don’t know your location but you probably
are located in the US. I am currently living in England and there is a web-site here (located
in London) called http://www.foodforthebrain.org/clinic.aspx. It is a brain bio center. Do take the
time to look it up. There very well may be somewhere similar in the US. They offer a
nutritional solution to restoring your brain chemistry with food supplements (no drugs).
I don’t know if they follow Dr. Pfeiffer’s formula (which worked for my sister) but the principles
will be similar because it doesn’t involve drugs. There is nothing wrong with your thinking.
Weening yourself off the drugs is the first step to restoring your health. It might take up to
one year (as it did for my sister) but believe me, you will never regret the decision. My sister
still says that it was a miracle that she made the recovery.
Renny says
Hi Larry,
I do live in the UK, in Oxfordshire. and I fully intend to look the ‘foodforthebrain’ site up. It sounds very good and maybe they can offer help to me.
I was given Bupropion by my GP as I simply couldn’t take any more of the DAWS and, it has helped although there is a price to pay as usual! I now have bad anxiety as a side effect of the drug so, I would love to try anything that will stop me from having to take any drugs as I am sick to death of taking them and putting up with the endless side effects and ultimately the withdrawals.
Thanks very much for suggesting the website and, apologies for the late reply!
Larry says
Hi Renny,
High doses of Niacin (Vitamin B3) are good for nervous disorders. You must always remember
to take a Complete B Complex Vitamin whenever you take an individual B vitamin. Niacin tends
to cause a tingling sensation on the skin whenever you take it in high doses. The solution to that
is to take Niacinamide (different form of niacin) without the tingling sensation. One of the best
sources available here in the U.K. is Solgar. They are based in the Midlands and have a web
site (where you can purchase any of their products) and do a mail order service. My sister used
to take one or two grams of Niacin daily. Sorry about this late response as I haven’t checked
this blog in a while.
Taylor says
Thank you so much for posting your story. I’m a 23-year-old female who started taking Abilify in 2011 for off-label use, treating trichotillomania–compulsive hair-pulling. My doctor didn’t warn me to taper off the medication, and being 21 and desperate to have my hair back, I was so willing to try anything that I didn’t do research the way I should have.
Anyway, upon stopping the drug, I experienced everything you described. The worst was depression and an extremely physical anxiety–no mental worries, just intense adrenaline and panic. I’m fortunate in that my “good days” occur more often than the bad days, but barely so. And I totally know what you mean about having experienced depression in the past and somehow just knowing this is different–it IS, I just can’t explain how, and like you, it’s really hard to get people to understand.
It’s been nearly two years since I stopped Abilify, and I’m terrified that I’ll be like this for the rest of my life. Obviously, prescription drugs–which I used to take at any doctor’s word–scare the hell out of me know, but only a few of the natural supplements I’ve tried help (Holy Basil extract and Ashwaghanda take the edge off the anxiety at its worst, but don’t seem to to help the depression at all). Honestly? I’m even scared of the supplements, so I stopped using 5HTP because I was scared it’d reduce my brain’s natural serotonin production somehow. Everything I now, is like walking on eggshells for my brain: I’m so scared I’m going to damage it further.
I’ve heard, anecdotally, that PAWS and DAWS rarely last longer than two years, and with my own two-year mark coming up in a couple months, I’m really freaking out that I will in fact be this way forever.
If anyone has some positive stories of coming out of this experience okay, please, please share.
Caroline says
Three years later, I just noticed that it sounds like you had (or have) akathisia. 25% of clinical trial patients taking Abilify as an adjunct to their antidepressant developed akathisia. Yes the FDA approved it.
Robert Visk says
Unfortunately some people may have a unpleasant reaction to mirapex, but one must keep in mind it helps so many more when looking at proven statistics compiled through exhausted testing by both the pharmaceutical companies and the fda. Certainly focusing on that fact should help one greatly in dealing with the side effects of such a wonder drug like mirapex, after all that’s the chance we take when we choose to use drugs to make ourselves feel better!
So when we all get together in a class action lawsuit to make these MFing federally approved drug dealers pay for the hell we’ve ended up living with, the above montra will be theirs and the FDA’s rational and excuse. I’m sorry to be a whiner, but its time to give them the best case of hell we can right in the ass, where their pocket of drug profit is! Oops there goes my anger side effect again.
Bry says
Wow….FINALLY some people can relate to the ABSOLUTE HELL I went through after discontinuing Abilify (dopamine partial agonist).
Taylor says
Bry, you are one of the ONLY people I’ve seen who experienced DAWS from Abilify specifically like I am–or rather who had/have it, know about it, and post about it, as I’m sure it occurs often but people get misdiagnosed with “new” conditions. I was told by one doctor that I was bipolar; another that it was postpartum depression (despite the fact my Abilify discontinuation and DAWS had been going on 4 months before I conceived); and yet another doctor who thought it was anxiety disorder and tried to shove Xanax and Lexapro at me.
Finally, I got a general practitioner of all things, who knew what DAWS was and believed me. Since then–about two months–I’ve been on a daily regimen of 50 mL Twinlabs Amino Fuel, 500–750 mg a day of Magnesium, and 1200–2400 mg of n acetylcysteine, or NAC. I had a very long “window” of good days between DAWS episodes (29 days) shortly after starting this regimen, and during that window I felt so, so wonderful. Completely like my old self. So of course, the onset of this latest episode was devastating, BUT it has been less severe than most of my episodes, so I’m hoping the regimen is helping by giving my brain what it needs to heal itself. I’m also exercising, though not as often as I should be, and reducing nicotine usage. Personally–just my belief–prayer has also helped, especially in those bawling-the-floor-of-the-shower moments when everything seems hopeless.
Anyway…I’m just so relieved to see someone else experienced this too from Abilify specifically, because I sometimes wondered if it was indeed DAWS since I could find no other anecdotes to that drug specifically. Are you still experiencing symptoms, if you don’t mind me asking? How long have you been off Abilify, and have you noticed an improvement (or even complete remission)?
I know I’m getting better. But it has been a very slow and difficult climb, and sometimes it feels like two steps forward, one or two or three steps back.
Bry says
Any updates Taylor?? Did you find anything that has helped you recover?
Taylor says
Bry,
Sorry for the extreme delay in replying – but it’s for a great reason, in that shortly after starting that regimen, my recovery took off like a rocket and my life returned to normal pretty darn fast!
For reference, I was taking 2 Tbsp TwinLab Amino Fuel Lean Muscle liquid, 1 tsp of l-glutamine powder in water, and 200 mg magnesium every single morning, with another magnesium at night. Did that for about a year i think. Over time, I gradually reduced all that until I was taking 1 magnesium at night and nothing else. Then I just took magnesium when i remembered, few times a week.
My recovery has looked like this:
-First 2 years after quitting Abilify, which included a pregnancy: miserable. “Waves” (bad days with symptoms) were frequent and usually severe. Had no idea what was happening to me yet but did wonder if Abilify caused it, since I had never had anxiety before and saw clearly physical symptoms emerging that never existed before. All bloodwork came back normal, thyroid test, etc. Note: I was at a weird “baseline” during pregnancy – felt off the entire time emotionally, like I was between a wave and “window” (good days of feeling happy and normal) the entire time. I believe my DAWS/PAWS “paused” (pun totally intended) as a sort of protective response to the pregnancy. After the birth….whoo, boy. Those waves made up for the time in spades. Anxiety was by far my worst symptom, a general “I’m miserable but for no reason” kind of panic. I also had lowered kidney function during waves – confirmed by a doctor – and leg cramps, brain zaps, etc.
-3rd year: I started journaling my good days and bad days, so I have a pretty detailed account of my progress during this time. Started that regimen outlined above and immediately saw my waves decreasing in length, severity, and frequency – and my windows got stronger and longer!
-Fourth year: same as above, but even better. Got pregnant again and enjoyed every minute of it! Totally different experience, apart from normal aches, pains, and mood swings I recognized from first pregnancy.
-from year 5 to now: totally normal, no waves whatsoever EXCEPT for a mild one early in year 5 when I stupidly chainsmoked a bunch of cigarettes at a wedding after only vaping low nicotine for a long time. Dumb. But the wave was mild and only lasted maybe 4 days total; I briefly reinstated my old regimen. Then I had almost 3 years without any DAWS/PAWS symptoms at ALL.
Which leads me to today (and why I’m back) – about 5 days ago I woke up with moderate anxiety and nausea, overheating etc identical to my old waves. Obviously this scared the hell out of me, after almost three years in the clear. But once I calmed down I realized what it was and tried to identify a trigger. I’ve been drinking coffee (1 to 2 cups a day) for a few years again, a couple glasses of wine every so often, and haven’t taken any rx psychiatric/pain pills since Abilify (and Percocet after my first pregnancy).
Finally I realized I had taken Sudafed for 4 days prior, full dosages around the clock every 6 hours!
Obviously it’s disheartening to experience symptoms again – and I’m sure skeptics will question whether or not this is in fact DAWS/PAWS, so far out. But it’s a very specific feeling and set of symptoms, one I can’t fully articulate but that has never occurred before I cold-turkeyed Abilify in early 2012. And Sudafed can certainly trigger things, bc otc or not, it’s strong and affects the system just like other symptom triggers. I had not taken Sudafed in its full dose before (one pill during the occasional cold vs constant). My cold was severe, but after this experience I’m sure I’ll be carefully challenging my idea of “severe. ” 🙂
Anyway – for anyone reading scared by my experience so far out, let me stress something vital: 1) I had not had any symptoms for nearly 3 years! That’s a super long window and a marked improvement over the years prior. It shows incredible brain recovery. And 2) this has been very mild. The first day was the worst (largely because I was blindsided – “this $*it again??” – and still didn’t interfere with my day. I went about my normal work and life, symptoms twinging now and then. Each day has gotten better.
I’ve reinstated my regimen again, but with Amino 23 Pro Supp (2 tbsp, now 1 and a half) in place of the TwinLab one, which has since been reformulated and no longer contains some of the amino acids the old one did. I like the Amino 23 so far. Magnesium is back to 2 a day. I’ll gradually reduce all these when the wave officially passes (I can tell it’s still ongoing because I wake up with a rapid heartbeat, slight dread and urge to cry for no reason, and feeling of being too warm; these always get milder as a wave fades but I don’t consider a wave over until they’re totally gone).
Again, it’s disheartening. I thought PAWS/DAWS was finished completely for me. And maybe after this, it will be. Maybe I’ll go through stress or take something that causes it to return again in another few years, who knows – but I believe, and have seen for myself, that my symptoms will keep getting so mild and windows so long, I one day won’t even remember what Abilify did to me.
Okay… I’ll always remember, haha. But in an educated way that led me to be my own advocate for my health. That’s one excellent outcome of this experience for sure.
Anyway… hopefully I’ve helped someone out there! Prayer helped me the most and led me to the regimen and answers I needed to get through this, and will continue to do so. I pray for healing for everyone going through this. It does get better, and setbacks are not regression. The brain can and does heal! God bless <3
Bry says
Taylor, I am so happy to hear that you have had so much progress and recovery from your DAWS experience. I have also recovered and it has been many years since my dreadful experience. You mentioned that Sudafed gave you some of the same “feelings” you experienced from Abilify withdrawal. Well, Sudafed messes me up too! I do not and will not take it as it makes me restless, increases my anxiety, and overall makes me feel “uneasy”. Perhaps we are similarly “wired”, or “mis-wired” =) . Reading about your experience while I was going through this “hell” at least provided me some relief knowing it wasn’t “just me” experiencing this….as all the docs had no clue what I was feeling nor what was causing it. Would really like to share notes/experiences with you…just not sure how to connect directly with you through this site. Stay well!!!
Mush says
Hi Taylor,
Thank you so much for this post and glad you are improving. Would you mind telling me more about your supplement regime? What magnesium do you use and amino acids, I am in the uk.
Thank you
Mike says
My wife was on Mirapex (4mg) for over 10 years to treat her RLS. In august she saw a neurologist who weaned her off of it in 2 weeks. My wife was placed on gabapentin. This is when her life of hell has started. The debilitating depression and anxiety is heartbreaking, maybe even life threatening. After 6 months we got to see an RLS specialist at the Mayo Clinic. He immediately got her off the gabapentin and ordered an iron infusion. Her RLS symptoms have been gone since mid august but the mental anguish has persisted going on 9 months now. She has been on Effexor, abilify, lexapro, Wellbutrin, Xanax, Ativan, clonipin and now rexulti. All with no long lasting help. We are wondering if going back in the Mirapex will help. She is physically and mentally exhausted to the point she is ready to give up on life. Watching her suffer for so long, I can honestly say I probably wouldn’t stop her. It has been almost as taxing on me as well. Caring for 5 adopted kids, 3 with special needs, caring for her and trying to work is wearing on me. We are also experimenting with THC.
Dr. David Healy says
Keep us posted on whether any form of cannabis helps
RxISK
Jakki says
Hi I am absolutely desparate to communicate with someone who is suffering from Daws. I have a vy rare neurological condition and have been on dopamine (l-dopa) based meds for the past five yrs. without going into detail (am prepared to if someone contacts me) I have had to reduce the dopamine. Hence the most horrendous horrendous symptoms. The anxiety, panic, sweats, are beyond explanation plus I have severe nausea, and then on top of that lost of enjoyment of going out to the point depression. I cannot get through to my medics just how really bad and utterly ill I feel. I have appointment in two weeks with my consultant and though we have a gd repour I just don’t know how to begin how desparate for help either medical, psychological (though had 7months of psychological treatment and told at the vy end all my problems are chemical!) I need. I just know I CANNOT cope with this any longer. This has been going on now for 9 months and thought of another day let alone another year or permanent like I have read fills me with despair. Though after a fair few months I have convince the medics this is daws and not all in my head no way do they accept or even believe how debilitating this is. Does anyone know if we can be referred to a consultant who may study or specialise in daws?
Any advice greatly appreciated.
lisa says
Are you any better?
susannah says
This is really interesting. I was diagnosed with DAWS 18 months ago after coming off quinagolide for a pituitary tumour. It was and continues to be an absolute nightmare. I am convinced that my brain has been damaged but my neurologist disagrees. I have seen various psychiatrists/neuropsychiatrist tried all sorts of anti depressants none of which have worked and made me feel awful. I am really struggling desperately need some hope and identification.
Susannah
Jinny says
Hi
I have tried to get off quinigolide. I simply can’t. I have nearly lost my job this week. I say things I don’t mean and do things before I can stop myself. Have panic attacks. Suicidal thoughts. Can’t eat. Can’t drink. Pour with sweat. Can’t sleep but exhausted. Please contact me. Regards jinny
Sally says
Hi
I would love to speak to you about this. I have been taking Quinagolide for 11 years and have tried twice to come off. It is impossible.
scott says
Does anyone else have gluten intolerance??? I’m coming off of Mirapex 1mg daily for Restless Legs Syndrome. I don’t like the side effects of the Mirapex so, upon consulting my doctor, I’m cutting back to 1/2 mg daily along with an over the counter leg cramps medicine. It’s been 5 days since I cut back from 1mg and I can’t sleep. Horrible RLS at night and often feel slight cramping throughout the day. Today my arms throb and joints hurt and my wife keeps telling me it’s because I have gluten in my system from taking Holy Communion this weekend. We are a gluten free household and it seems as though my RLS is aggravated by gluten. I wonder now, after 3 years on Mirapex, if I really even needed the drug or if I just needed to get off of gluten sooner? Now, I feel like I’m addicted to Mirapex and am going through DAWS as others describe. Feeling like crap and tired and don’t know what to do next…
MaryB says
My husband is suffering terribly from DAWS as a result of coming off Mirapex. Did going gluten free give you any relief? Did you find anything else to help you?
Jeff says
Try low dose Oxycodone therapy. 10-20 mg. at bedtime. It is the only thing that saved me so far.
Jaimi says
Saw your reply and i too had severe severe withdrawal from 6mg of requip prescribed from a uneducated doctor. I have.tried everything and finally my neurologist gave me an opiate to take at bedtime, which works so far to sleep..alsi just got 3 infusions of IRON to see if RLS can be controlled with that..i went to ER 8 TIMES IN withdrwal period cuz it was the worst i ever felt.
Please let me know how u are do i ng!! How is ur opiate treatment going? JAIMI
Debbie says
Hi Scott, I am also trying to decrease/stop my Mirapex for RLS. I am 90% Gluten free. If you think you are Gluten sensitive, you can be tested for it. Everybody is different, I am not gluten sensitive, but I can tell when I have a load of gluten, but I don’t think it makes my RLS worse. I can’t imagine the amount of gluten in a small communion wafer would be significant unless you are extremely sensitive and like I said you can be tested for sensitivity.
I would like to know what other physical symptoms people had from withdrawing from Mirapex.
Terrie says
In late August a sleep specialist told me I was suffering from augmentation thanks to the Mirapex I had been taking for over 20 years for RLS. His protocol was a very rapid weaning with no bridge medication to help. It was hell. When I hit 125 hours of continuous sleep deprivation and walking of swaying back and forth to relieve the discomfort I had to be admitted to the neurological unit of a hospital. I was having syncopal episodes more than a dozen times/day. I could be walking and suddenly find myself on the floor. I hit my head on a bathtub several times when I suddenly collapsed while standing. In the hospital my condition continued to deteriorate – that is when the seizures started. I remember the first one because it only involved the left side of my body. The next one or two were full body and I have very little memory of them – I just remember holding onto the bed rails and the whole bed was shaking. I could not talk and my brother who witnessed them said my eyes had rolled upward and he was sure they were losing me. I do remember looking at the blood pressure monitor and seeing it fall then rocket upward. I also remember the nurse saying “that’s not good” and running out of the room only to reappear with a doctor after which I remember nothing except waking up the next morning. There was significant depression as well and it was extremely hard to deal with. It is finally gone but I’m left with RLS symptoms that seem to briefly respond to medicine and then get worse. I wish I had never taken the first Mirapex. Bad drug!
MaryB says
This process sounds very similar to what my husband has gone through the past nine months. What, if anything, helped you with the depression post Mirapex?
Bryan says
Greetings;
I can corroborate the agony of DAWS, but I am afraid I have little advice. I am 2.5 years underway with treatment resistant DAWS and this includes 2 rounds of ECT.
While the spiritual lessons and challenges have been important, the twist is these are so hard to integrate when the problem is brain-based.
This has qualitatively been the single most destructive medically related effect in my life, and for what it’s worth for context, I underwent a failed general anesthesia event wherein I was chemically paralyzed but lucid with intact sensorium. This is not hyperbole. Objectively reviewed oncurrence between my recall and nursing notes proves intact awareness. I would repeat this torture a dozen times without hesitation if doing so would ablate the DAWS.
I continue to seek novel treatments and will update this group if I find anything meaningful.
Several clinical risk factors were known to pre-exist: OCD, genetic test indicating COMT 166 Val/Met. This treatment was reckless and has almost claimed my life 100’s of times.
I trust I will somehow emerge a better person. How? Not because I feel that way, but because believing anything else would be fatal, which is far less meaningful a consequence than I ever imagined it could be.
Please please please be careful with these compounds. Accumulating evidence supports long lasting adaptive structural changes in the receptor.
How this is not familiar to more specialists is amazing to me. It reflects how reckless our medical industrial complex has become in the face of moral hazard associated with big pharma bottom lines. Any industry in the history of man that has been so financially uninhibited has been associated with great corruption.
The “cure” is to address the moral hazard. That being the stranglehold that big pharma has on so many regulatory and research elements in medicine. These are subsequently corrupted.
I invite you, as I did, to contact the FDA and invoke the Freedom of Information Act to obtain the pre-marketing research for pramipexole. Entire sections bearing on withdrawal phenomena are missing. See for yourself.
Lawyers, guns, and $$$ are the solution.
I would strongly strongly suggest that this group consider banding together formally to bring class action litigation, transparency, and subsequent safety to those who follow.
Someone posting earlier remarked of the beneficial aspects. Indeed, this compound does benefit many patients. Too bad it is not consistently prescribed to specifically that cohort, especially since we have the diagnostic tech to qualitatively identify those with statistical probability of benefit and those at risk for sequela
I am not a physician, but I am qualified as an epidemiologist. I have also achieved rarified awards for medical discovery. I will bring a strong evidence base to bear if you will join me.
Thank you
Lynn Gray says
My husband was given ropinirole for his restless leg syndrome, within six months he was on the maximum dose of 4mg. He started to change, lied a lot, started smoking again, couldn’t care less attitude, then caught him watching porn on his phone, then on trying to check an amount on his credit card statement seen a massage parlor charge, it was all so out of character for him, it still did not occur to me. Four years later his restless leg sydrome totally out of control, using sex workers, deceitful, all caused by this drug. It was myself who eventually put the drug and the change in my husband together.
The DAWS was terrible he was like a zombie for about four days, no sleep, not making any sense when he spoke. Eventually he walked into marble topped table, it fell on his hand and crushed the top of his pinkie. In some ways I believe the shock of this actually jolted his brain back to working slightly and he fell to sleep for around eight hours.
There were also times when even though not on the drug anymore the impulse would come back, he looked like a mad man, thankfully that has only happened twice. It has only been two months of him starting the painful road back.
The pain in him because of what he has done to me is terrible, the anger towards the medical profession we both have is truly beyond words.
I truly want to sue them for the pain they have caused but I understand the Supreme Court issued an order a few years back that you cannot sue the company if you were prescribed a generic version of the drug, and of course Ropinirole is the generic version of Requip.
It is a very bad drug, it is like methamphetamines, cocaine, and it makes your symptoms worse.
Camille Nixon says
Bryan, We are interested in banding with you regarding Mirapex and its horrible DAWS. Has anything started, yet, in the lawsuit regard?
sherry says
I’m glad I found this site. I’ve had type 1 diabetes for 46 years with just about ever complication except for actual amputation or blindness but many treatments and close calls. I now have to take lasix and potassium daily to help breathing. I’ve mirapex on a occasional basis such as 1-2 nights every few months. I’d started having led after beginning this new treatment and using mirapex 1-2 a week. I feel awful! My blood sugars and no have gone crazy and when I try to walk the least bit I can’t breath and almost pass out. NO is lots higher but shouldn’t be! Starting to get better slowly but took mirapex last night. My eyes don’t want to focus and can barely function. I also have severe insomnia and began having chest pain after 6 nights of 1 he most of sleep at night. Cardiologist put me on high dose of diazepam but it only works some of the time. Going crazy and afraid to drive or go anywhere. Wish I hand’ t taken that mirapex last. Lots of severe chills and then sweating. Went thru similar when I stopped cymbalta cold turkey Jan 2 this year after only taking for 3 months. That almost killed me between taking it and then stopping it! Some of these meds are killers!
sherry says
Please excuse my errors. Hate auto correct. Trying to say blood pressure is shooting sky high and shouldn’t’ t be because of meds supposed to treat that along with my diet.
Bryan says
I wish to appeal to this group of victims again with a request to organize our voices
Bryan says
Greetings again. I can’t emphasize this enough. I work in Government Health Policy and it is overwhelmingly clear to me that one of three things must happen to bring accountability
1. Death of a child of a celebrity or political figure
2. Mass media panick as in the Ebola scare
3. A critical mass of people have to report a mutually congruent destructive issue.
We must organize. There are dozens and dozens right here. If everyone collaborated we could summon powerful media, legal, and political attention.
Please if you see this, forward it to someone else suffering and ask they do the same. I will construct a website for interested parties to organize. Stay tuned, get the word out, and don’t let corporate moral hazard damage any more lives. We all have a responsibility to those who follow.
If you are a prescriber who is concerned or has suffered, please be especially vigilant.
If you know someone in ANY political office, bring this to their attention. Enough is enough. Let’s stop this!
Jeff says
yes. lets do something about this hell we received from the use of Ropinrole.
Heidi says
That same thing is happening with people in the psych drug damaged community. SSRI’s, SNRI’s, MAOI’s, benzodiazepines, mood stabilizers, antipsychotics… all of these medications are causing these problems. DAWS is absolutely identical to PAWS. Celebrities have died. People have been speaking out including well trained, world renowned doctors. Nothing is happening. NOTHING! I feel like I’m living in an episode of the Twilight Zone.
I hope you can get something off the ground but you may want to consider a larger crowd. You can find stories of damage in many Facebook support groups and on websites like http://www.survivingantidepressants.org and http://www.benzobuddies.org.
What I find so disheartening is that people are so damaged, they don’t have the strength or mental capacity to speak out, speak up and fight. Then, when we do fight, we run into people who swear by their drugs of choice because they’ve “saved their lives”. I’m sure they think so because when they’ve missed a dose or tried to come off, all hell broke loose. With antidepressants, emerging evidence shows they’re no better than placebo in the majority of cases.
I would be interested in joining forces with you. I am still very damaged and cannot manage consistent follow through many days but at least I’m willing to do what I can.
Bobby says
April 2018……have you made any progress…..I have thought about what you write for years….What I have now noticed is the number of doctors who now recognise the problem exists, whereas a few years back it was hard to get any doctor to listen….bobby
Bryan says
Yes it’s a tall order for us. I’m struggling with daily life. Another chore? “No chance” I think to myself.
Then I think about the people in pain who preceeded us and have reduced our risk to other dangers by speaking out. We owe it to our kids.
If we share the work and ask for help, it won’t be that bad. It will also help us process what we have been through.
I have a public health agenda not a financial agenda. This news must be circulated and warnings must be issued.
Please send this thread to any attorneys, political figures, and public health officers. This cannot be allowed to go on unabated.
Please. I’m begging for this community to collaborate.
Thank you
Margie says
Hi Renny,
I can relate to your struggles along with all the others who have written on this site. I believe I experienced DAWS after taking the ergot- dopamine agonist Cabergoline, which I was taking to shrink a pituitary adenoma( tumor) Little did I know what I was in for! Within the first week of taking the stuff I started exhibiting problems- muscle aches, tingling in my feet, etc. By the fourth week I started having fits of uncontrollable laughter lasting 5 minutes at a time. I also felt like bugs were crawling all over me and that our house was infested with fleas! Finally, after 9 weeks, I had a full blown attack – burning pains down my extremities, tight pain in my chest, passing out. Nobody believed there was really anything wrong with me(the ER doctor nor my endocrinologist) until I went to a wonderful neurologist who knew that I was suffering from a mild case of ergot poisoning. He told me that the drug was making me crazy! After abruptly discontinuing Cabergoline, I started feeling weird in another way. I had all the symptoms that all of you have- strange anxiety, crying, depression. At first I attributed my anxiety to the fact that I still was dealing with the unpleasant effects of the ergot, but later I realized that there must be a connection to the Cabergoline. There had to be a link to my hysterical laughter while on the medicine and my uncontrollable crying while I was off of it. I filled out a complaint with the FDA explaining the whole horrible experience. I am now so leery to take any medicines given that I still have episodes of burning and numbness in my extremities and half of my face. At the suggestion of my neurologist, I switched to a gluten free diet which has really helped my anxiety and depression. Unfortunately, being gluten free didn’t help my nerve pain, which we had hoped for. I feel that the Cabergoline damaged my nerve receptors and I am stuck with this forever. In any case, I would recommend a gluten free diet. I can’t explain it, but I feel almost normal emotionally. At least one thing went right! Please let me know if any of you have had the same experience being on an ergot dopamine agonist. Apparently, in Europe they have recently restricted the use of ergot derivatives. I wish I had more information about this drug before I blindly took it two years ago. According to my neurologist, everyone is obviously different and the FDA should thoroughly test these drugs before throwing them out to the public. I feel like I was a guinea pig!
Taylor Anthony says
I’m so sorry you’re going through this. I have similar issues. This was posted in 2014 so I’m wondering if you were still having any problems from the cabergoline?
I nick says
Hi hi I have experience some real problems my pituitary tumor I’m experiencing them right now Icabergoline and dostinex I started taking dostinex twice a week when I was 28 years old I had already established job and marriage familyI was doing pretty well after the medicine maybe a year started noticing changes I guess I started changing right away but it took a while because divorce and problems like that you know cousin sneaking up on you your behavior is harder it’s hard to pinpoint as you change other people see him but you don’t understand because anyways I ain’t washed play Home Free marriages a lot of jobs I got a lot of problems ever since I started taking the two are medicine my life went downhill I slowly started losing everything that I worked for and I couldn’t figure out what was going on I had depression and anxiety I couldn’t fall asleep I couldn’t wake up I had to take more pills for morphine no I thought I had depression and anxiety before I started taking the medicine it just made it five times worse my family couldn’t figure out what was going on I can figure out what was going on they thought it was I was lazy a thought then I was too aggressive there’s a lot of things to change saw I decided that I was going to stop taking the medicine and have the tumor removed it had Shrunk the tumor it did its job that’s for sure trunk my pituitary gland also I I have what’s called a sella syndrome now still have the tumor still have the pituitary gland it’s just the size of a piece of rice caved in quit taking the medicine and I asked my family for help to make sure that I didn’t go through all these changes without family they didn’t take me seriously I changed I started acting different going through all kinds of crazy mood swings and I lost my job I lost my family I lost everything I spent three years in a shelter trying to figure out some way to get my family to understand it but I didn’t want this and I want something going on with me they thought I was on drugs but I was just going off my tumor medicine but I had taken for 22 years so that I can have my pituitary tumor removed but I wouldn’t have to take dostinex and 1o pills for the side effects . In 22 years I went from a wife marriage and a home in the Sun and a good job too losing that marriage marrying again losing that marriage and my house marrying again ending up in a place myself I tried suicide I tried to get out of the situation that was tearing me apart I didn’t know how to explain it to anybody I didn’t know what was going on and then I found out when I was applying for a job I needed my work history and I looked at it and I had 50 jobs I had one job eight years in a row was doing really good and then all the sudden everything changed it changed because that’s when I started taking Boston X for my tumor and all the side effects happened it did its job I had more energy I felt better for a while but it gave me high blood pressure major anxiety instead ofAnxiety my major depression became worse and worse and worse over time chronic fatigue trimmers dizzy risk-taking gambling sexual addiction
Bryan says
Thank you both.
I am so sorry for your struggles.
What do we do now?
Go on day to day?
Pay this forward for those who follow?
Please please help me rally this group. I will facilitate dignified support.
We MUST stop this. It is our unfortunate moral imperative as the ones who happened to be first.
Please gather others and echo this call. Change is possible!
Thank you.
Bryan says
Research is accumulating. Patient experiences are accumulating. Transparency is near.
It is clear from present quality research , that the dopamine agonists have a profound effect on the D3 receptor in terms of provoking adaptive epigenetic changes to the receptor structure at the molecular level. These changes are very long lasting in people with certain genetic traits. These changes disable the functionality of the receptor which influences everything from mood, to movement, to endocrine functions. Very very very destructive to about 20% of people who receive them.
What is so unconscionable, is that there were indications of these risks in the pre marketing studies and these results were omitted from FDA reporting.
Even the physicians don’t know, because the pharmaceutical company did not publish in entirety.
So we on the “bleeding edge” of discovering that which was already suspected are faced with neurological changes of tremendous magnitude.
This type of rushing a drug to market is unfortunately all too common as we all see from almost weekly news reports of drug withdrawals by the FDA. This moral hazard must be changed. The value compass must be reset. Pharmaceutical companies are some of the most profitable businesses in history. Yes they bring terrific help to many, and yes, they also leap before they look. The latter must be enforced. The only way this will happen is through political action.
Bry says
Bryan,
Perhaps you could set up a website and provide us a link where those of us effected by these drugs can interact. I wouldn’t wish the experience I had on my worst enemy, and would be happy to contribute to any cause that could help others avoid the pain I experienced.
Bryan says
Greetings;
I have been compiling meaningful research data. The site administrators suggested as much for assisting others.
Neuroscience is sooooo complex. The most expert minds in the field will rarely draw a conclusion. It’s that we just know so little. Really, I have advanced science training and I have poured over literally thousands of articles and books in an attempt to discreetly identify the mechanisms underlying, and therein perhaps infer better treatments.
Alas, a website or blog is imminent with all information shared here as well. This organization is undertaking a meaningful and important service and they need us to be good historians so they can build arguments on data more than anecdote.
I’m afraid there is too much to post/ apply here and the context must not be lost. Perhaps a powerpoint or webinar? What would help?
So we struggle with treatment. It is clear from over 250 different in-vitro and in-vivo studies over the last decade, that Dopamine 3 agonism is especially affecting to an organism. Physiological Adaptive down regulation is seen in every single experimental example. The bears on the transporters and on the intracellular machinery that generates dopamine.
Also, it’s VERY clear from numerous studies that the PROPORTION of different types of dopamine receptors is critical. Some act in a check/balance fashion, others in an outright locomotive fashion. The DYSREGULATION of this proper proportion is a key element. So are the associated NMDAR and AMPA and GABA receptor dynamics.
It’s too complicated to “answer” at this time.
A few interesting correlations HAVE emerged in the research having to do with specific genetic polymorphismsms. Additionally, new nuclear imaging tests that will better discern what is happening have become available.
As a “teaser” I’ll leave you with my own.
I have a genetic polymorphism called COMT Val/Met. Turns out that protracted DAWS risk is over 20 times greater in that cohort. The neuroscience folks can tell you why.
Genomind is an American company that can do many of these tests. I have no conflicts or affiliation with them.
SPECT scanning has advanced to the point of receptor type specific studies.
This is rarified indeed. But not off the radar. Many of the risk assessment studies happened well before this was prescribed to me.
This is a crisis of moral hazard, laziness, and doctoring without vigilance.
It’s a social side effect of the corruption and and general indifference that has nearly swallowed all but a few outliers in medicine.
Hold their feet to the fire.
Dr. David Healy says
Bryan
This fascinating – can you tell me/us more about the genetics angle you raise here – as much detail as you can give
David
Lin says
Dear Renny: I don’t know if I have the Dopamine Withdrawal. Like you, I have been on Mirapex (Domperexole) and am being weaned off of it while I start Lyrapex – 1 less Mirapex and 1 Lyrapex week 1, 2 less Mirapex and 2 Lyrapex week 2, 3 less Mirapex and 3 Lyrapex week 3, no more Mirapex (original dose was 4) and 4 Lyrapex week 4. Like you, I have Crohn’s Disease and Diabetes (I have Type II). I also have Congestive Heart Failure, Dilated Cardiomyopathy, Restless Leg Syndrome, Obstructive Sleep Apnea, Cough Syncope (I passed out choking at lunch on Friday), Rheumatoid Arthritis and Osteo Arthritis, and Depression. I was on Wellbutrin to quit smoking 12 years ago and stayed on it for the Depression to deal with so many medical conditions. Last fall I reported to my Nurse Practitioner that the Depression had worsened and I was weaned off the Wellbutrin and at the same time started the Cymbalta without negative side effects during the process. My negativity has lessoned significantly but my RLS has worsened. My husband has to massage my legs pretty much nightly now putting on Yves Roche’s SOS Heavy Legs which usually helps.
The first week of the weaning off Mirapex was fine although I was more tired but I’ve been experiencing difficulties with my Crohn’s and with my CHF and possibly my DCM. Yesterday when I got up, I stumbled and almost fell over. My Husband had to help me navigate. I was able to navigate better with a cane but still stumble and grab onto door frames and such. At first I thought I had stood up too fast. With my heart condition, if I get up too fast I get a bit dizzy, stumble and can fall. But that sensation goes away within minutes. This lasted the whole day. When I had reached the kitchen I realized it wasn’t only navigation I was having trouble with but my eyes that are often blurry and slightly unfocussed were much worse and felt red, itchy and sore like I had the flu. Then I realized I was feeling nerve impulses down to my fingertips and my fingers were twitching slightly – more when I tried to use them and I was dropping things, touching in the wrong place because of a nervous twitch etc.
I knew I would be unable to drive so had my husband drive me to the YMCA where I usually do 40 mins of water jogging and 50 mins of water aerobics (often slowly) on Tues, Thurs, Sat, and Suns. I seemed fine as far as holding myself up when I was in the water. I wore my flotation device and advised the life guards that something weird was going on with me. My arms also twitch some times and I sometimes feel the impulses in my lips. I woke this morning again with the same only slightly worse.
I laid down and had a 3.5 hr nap this afternoon. That was unusual because although I’m often fatigued/tired, I can’t lay for more than a few minutes before my RLS starts acting up and I can’t stand to stay prone.
I am currently taking extra strong water pills 2x a week that have lowered my Potassium so that I was prescribed 600 mg of Potassium a day week 1 and 1200 Poassium a day week 2 and again this week. The lack of Potassium caused severe muscle cramps not only in my calves and arches which is normal for me, but my side, my back, my neck, my full thigh, tops of hands, tops of feet, and around my ankles. They were terrible but seem to be fewer and fewer although I awoke from this afternoon’s nap I mentioned with a Charlie Horse in my right instep. I am having weekly blood work done for Creatine levels in the kidneys, Potassium, Magnesium, Zinc, etc. and am on a monitored Dehydration watch. A lot of the things to watch for I already experience from the CHF and the water pills.
I often nod off while on the computer but today has been the worst taking hrs to do a 30 mins keying job! I just did the same while on here and had to erase about 25 rows of “Zs” that my finger was resting on!
DO YOU KNOW IF THESE NERVE IMPULSES AND NERVOUS TICKS ARE PART OF THE MYAPEX WITHDRAWAL?
lisa says
Gained 50 pounds lost jobs got divorced, got dui,spending sprees,depression, and rehabs since I been on this. Been tapering off and have depression and lost.
claire says
Last Friday I ran out of Mirapex. Didn’t think much of it except I couldn’t sleep. No surprise. What was the surprise was the incredible depression. Seriously! I have never thought of suicide but in these last days I did. Even thought of admitting myself to a wonderful hospital not far away. Refilled yesterday and at this moment I feel ok. Took my last does last night. Last night was no picnic either but my guess is it takes some time to get back into my system. So Dr. Bryan, if you are looking for the wonders of Mirapex withdrawal, I think you have some good information here. People need to know this. The FDA is slowly killing us. If we didn’t have it before we have it now, or worse. How can we eliminate the FDA?
Arlon says
I have Parkinson’s for 5 years,and for a few years I have managed it with diet, Selegeline (MOAB inhibitor), Amantadine, and… Mirapex. After about a year of MirapexER at 3.75mg, I felt like it was the most side-effect laden, caustic, ineffective crap I had ever allowed into my body. So… when I went cold turkey, there I was taking 4am bike rides through my hilly neighborhood to fight the DAW which had manifested as RLS. Then (about 2 years ago), in response to that, I began a self-directed program to titre down Mirapex to zero. I pay a price of insomnia/anxiety/rls/etc with every cut I make (like now!). A few days ago, I made the cut down to .125mg from .25mg. per day. Fighting the DAW has been worse than fighting the Parkinsons! My depression is thankfully no so bad, but I feel like it lifts a llittle with every reduction I make. I can see the light at the end of the tunnel now.. Let’s hope it’s not an oncoming train! Well, it’s time to try the couch again…
Jacob Dean says
Were you able to successfully go off of it? I’m desperate for information. I’m trying to taper off of the medication after taking it for 7-8 years but my RLS is so bad! Should I just go cold turkey and deal with the side effects for two weeks till my dopamine rebuilds itself??
Jane says
Hello Jacob. I was on pramipexole for about as long as you, and as desperate as you. I refused to increase my dose as I had begun to understand how dangerous it is. I tried to come off twice, and could not manage more than one night. It was a terrifying experience, no one can be expected to endure that alone.
I had been given methadone as a backup when things became unbearable, which was increasingly often.
One day, in the middle of the day, I had a full-blown attack in my legs, arms and torso. That was it for me. I took 15mg methadone and decided to stay awake until I fell over from exhaustion. No more pramipexole.
I fell over with exhaustion at 2 am and woke eight hours later with calm, relaxed limbs. Eight hours of unbroken sleep for the first time in decades.
If you have experienced ICDs from the dopamine agonist, then it is possible you will end up with DAWS, as I have. But one of the opioids in the right dose will help you kick the agonist. It depends upon your doctor and what he is willing to prescribe, but the real experts are agreed that methadone and buprenorphine are the opioids of choice for severe RLS.
Whether or not you can get back to pre-drug baseline, and be drug-free, is specific to each person.
But you can certainly get off pramipexole – or whatever agonist you are taking – and live a life without typical RLS symptoms and no sleep.
If your doctor is unwilling to assist, then walk out the door.
https://www.mayoclinicproceedings.org/article/S0025-6196(17)30825-X/pdf
This article is by the best of the best, working together.
lisa says
Ive been off of mirapex for twi weeks and im going threw hell. No doctor knows what to do. I have major depression.
Jeff says
Low dose oxycodone therapy, 10mg-20 mg. at bedtime.
George M says
My wife is undergoing mirapex withdrawal after the drug worked for over five years for RLS, but then she experienced augmentation. Now she has depression, and anxiety and RLS. Her neuroloigist said he is out of options for her. I would really like to hear again from Remmy about her depression and whether the wellburtin helped, and anything else she can tell us.
Jeff says
Again, low dose Oxycodone therapy. 10-20 mg. at bedtime. for as long as your DAWS lasts. Could take years.
David K says
This is going to be long and I apologize for it now but here’s my story…
I took Mirapex for 9 years starting in 2005 for RLS. Also took an ADD stimulant medication during that time. In late 2013 I ended up on Narcotics for pain management after having injured my back. One thing I noticed rather quickly back in 2005 was that Mirapex seemed to have an anti anxiety or anti depressant effect on me and that was quite an unexpected and welcomed side effect, as I have suffered from anxiety for years. I also noticed an increased libido and an increase in obsessive type behaviors. I chose to ignore those side effects as I didn’t really equate Mirapex with the libido or the obsession until years later. As the years progressed my RLS got worse and worse to the point where if I missed a dose of Mirapex I would not sleep and would suffer from the most unreal bouts of RLS you could ever imagine. It was clear that Mirapex was making things worse but I did not want to stop because I was afraid of losing my “miracle” cure for anxiety. ENTER the Narcotics. After getting put on narcotics for pain in 2013 things spiraled out of control. After about 9 months of being on a cocktail of Mirpex, Vyvanse, extended release Morphine and double strength Norco, ALL of which effected my dopamine system, I began to have a serious mental “episode”. One night in July 2014 my wife and I had a long and intense fight. We decided afterwards to make wholesale changes within our marriage all which resulted in us becoming closer as a couple and stronger than we had ever been before. BUT, I was on all these dopamine meds and I started having long bouts of paranoid delusional daydreams about my wife and her sexual involvement with a few men 14 years prior to this time(2014), all during a time when we had split up and were dating others. I had been ok with what happened back in 2001, for years, and was able to rationally cope with it as a human being with a normal range of emotions. But now for whatever reason I became an animal and became convinced she was hiding something from me all these years later. My wife was floored; I was like Dr. Jekyll and Hide. I ended up doing some serious damage to our marriage based on a fictional story in my head that seemed to me to be as real as the sun and the moon. I did some really detrimental stuff after which my wife took away the Narcotics. This was in August of 2014. I then decided to get off of all meds as the negative thinking was uncontrollable. It took some time but I was finally med free by November 2014. I cried from August 2014 to Early December 2014 daily. Suffered severe depression until December 2014 and at one point went 9 FULL days with only 1 hour or less of sleep a day. It was brutal! As of today, May 2015, I can honestly say that I feel that I am totally screwed up. Some days I have ZERO motivation to do anything! I am more needy than a teen age girl in love. I feel sometimes like I could stare at wall for hours. I can’t fall asleep and I wake between 4 and 6 am no matter what time I fall asleep. I still spend hours and hours a day ruminating on what happened between my wife and I decades ago even though our marriage has totally recovered and is better than ever. Thankfully I am just now starting to feel like I am beginning to normalize, having some days that are perfectly normal but I always seem to have days where I return to that zero motivation and highly emotionally sensitized feeling. I have experimented with the supplements 5-HTP, L-Tyrosine, Inositol and a few others. They do seem to work. The 5-HTP got me out of a serious depression in December and I discontinued it a few months ago with no return of the depression. L-Tyrosine seems to help with Dopamine but it is very stimulatory and my anxiety, especially negative looped thinking seems to get exacerbated on it so I have finally discontinued all supplement for now. Inositol did wonders for anxiety but I had to take large quantities of it and had terrible digestive issues. So here I am wondering if my normal range of emotions will ever return. I can’t help but think that MIRPEX as well as the other stuff screwed up my dopamine system. I don’t want to take meds EVERY again. I want my life back. I have never experienced what I am experiencing now, ever.
I read all the comments and felt like sharing my story. There doesn’t seem to be any answers out there but maybe just maybe a little exercise and some more time may help and maybe someone out there can relate?? Maybe somebody has some hope with a story of recovery???
David
lee john pursall says
we have started a group that is dealing with DAWS, the group is an actual mix of conditions PD /RLS/PLMD, we feel along with the terrible side effects of da meds we have a major problem with DAWS , my partner suffered with this after being whipped off 26 ml requip a day in a matter of weeks ,we feel we need to start a major media campaign set at exposing these problems that people are going through
Tracey gagliano says
Can you give me information on your group I feel my mother is suffering from DAWS she was recently tapered off her requip because of ICD and started a new medication. Four days later wound up in the hospital with sky high blood pressure and couldn’t breathe. Her doctors put her back on requip but she is still having major issues I feel we can’t get any answers her blood pressure is all over the place she can’t eat and it has been since the medicine change.
Jeff says
What is this group and how can I join ???
Lorre Leon Mendelson says
I have had DAWS and not sure if I still do. I’m very interested in your group, Lee, and would like to learn more about it if it is still going. Thank you so much. Lorre in Nashville
Robbiemeanswell says
I have DAWS and am looking for support. is this group still functioning?
Victoria says
After being on Mirapex for over 6 years I developed a gambling compulsion which knocked me sideways because I was almost 63 years old and had not gambled before. Of course over months it turned into a serious financial issue beside humiliating me. My doctor is titrating me off and know that I am at the quater dose I can’t quit crying, suffer from some badass depression and heart thrumming panic/anxiety. Anyone knows how long this will last?
Fabrizio says
Hi everybody:
I was diagnosed with PD last July, put on Mirapex slowly about one month ago, upping the dose as recommended by my Doctor. But the last days I’m beginning to feel dizzy and quite depressed. Seems Mirtazapine (antidepressant) I was put on several months ago is not working anymore. I don’t know what to do. Scared to death by my illness and all those chemicals “working” in my brain.
Robin Liberatore says
I have been taking ropinerole 1mg for 7 years or so for RLS. The only break in schedule was the time I forgot my Rx when leaving town for a week on vacation. NO sleep and extreme RLS symptoms for 7 full days that started almost immediately. I have not stopped taking it yet but will begin to taper soon. If I am a couple of hours late taking it, my withdrawal symptoms begin. I started looking for information and support now before the HELL starts. After reading posts from others, I fear what my brain has been subjected to without my full knowledge of the impact of this drug on my system and the damage it may have caused. I seriously want off all meds as Big Pharma is NOT looking at my best interest. I would appreciate any suggestions on my upcoming endeavor as I am not looking forward to what lies in store for not only me, but my family as well.
Jeff says
Please be prepared for some tough times ahead. Low dose opiod therapy was the only answer for me. Still going through this hell after 8 months.
Christy says
I actually started with the opiates about 9 years ago for ruptured disc injury to my lower spine and osteoarthritis in my lower spine and both shoulders (fourteen years of competitive gymnastics taking its toll as I age). I finally wanted off of the opiates, but needed something for my back pain, RLS, and insomnia so I was given Clonidine to get through withdrawals, Mirapex for RLS, Celebrex for pain, and Tamazapam for insomnia. It has been 3 weeks now and I have yet to sleep over 2 hours per night. I want back on the opiates so bad right now I can hardly stand it! Especially after reading all of this information on DAWS and such, I feel quite scared that I’ve taken an even more detrimental path, when with all things considered, I functioned just fine on opiates for all those years. I had to stop the Clonidine after 6 days because I could not stand or walk any more and would continually almost pass out upon standing. Suddenly, after standing at my desk for over 2 years for my back, I could not even stand long enough to get from my car to my cubicle in the morning. Now I’m just taking the Celebrex and Mirapex, because I’m already out of the Tamazapam – which I went through very fast hoping it could serve its purpose and let me sleep, which it never did. I cannot believe how bad the RLS and insomnia is while taking the meds that are supposed to help it. The RLS is so bad that it has actually even moved to my hands and arms, so that’s a first for me. Now, after reading all of this on what to expect sans Mirapex, I’m terrified I’m heading to hell again and perhaps permanently (probably not since it’s only been a few weeks, but still). I plan to start tapering off tomorrow, but damn, the opiates are seeming quite innocent to me now. This is getting quite ridiculous at this point, to say the least. Thanks for allowing me a place to vent 🙂
Jay says
I feel so terrible for all of you. I really do. I became dependent on opiates and I know the exact feeling that you are all describing. Aside from the physical complications, are soul crushing psychological conditions which include Completely debilitating dysphoria, anxiety, insomnia, suicidal thoughts, cravings, lack of energy, etc. My saving grace was that the worst of opiate withdrawal only lasts about 5 days. Despite this knowledge, it feels like it’s going to last forever and one minute of it is unbearable. You guys going through DAWS are so strong to fight it for months and years on end without a moment’s reprieve. I sincerely hope that you pull through and that more research, awareness, and treatment become available soon. There is nothing more painful to endure than the breaking of the human spirit. Keep in the fight. Don’t give up. Eventually your brain will recover.
Jane H says
Jeff, if you are still active on this site, could you tell me how you are doing?
I ask because I switched from a dopamine agonist to low-dose methadone 14 months ago, following severe augmentation and frighteningly destructive compulsive behaviours.
I am now free of overt RLS, but have sunk into a severe and suicidal depression. In retrospect, it started not long after quitting pramipexole.
I wrote to Doctor Mark Buchfuhrer to ask if the methadone could be responsible for this, and he replied to say that it was highly unlikely – though not impossible.
I have come to the tentative conclusion that I am suffering from DAWS, briefly hidden by the magic of sleep that methadone affords.
I did have pre-existing but very mild obsessive-compulsive issues, so it is clear I am right in the firing line, no doubt with the requisite polymorphisms.
I cannot imagine how to survive this much longer.
Fabrizio says
Hi:
Tapering Mirapex to 0.25mg/day (2 takes daily 0.125mg each) after 5 weeks treatment.
Dizziness stopped, but 2 days ago I felt an overwhelming depression/anxiety and almost suicidal all day. I read somewhere that anxiolitics like benzodiazepines (diazepam, clonazepam, etc.) are poor help for DAWS, wich is a matter of concern. I took 10mg diazepam (Valium) yesterday, and seemed to help. Same today, but less effective.
I’m scared to hell with touching another Mirapex, and will inform about all this problems my Neurologist when he is back from Christmas Holidays next January. God bless you all.
Dana says
I am trying to taper my Mirapex, week 2. this is hell, nothing seems to work, arms,legs, brain, I have slowed and am depressed. Can’t seem to get any help from my doctor. I need to go back to work, but how…..
Donna says
I have been trying to get off Mirapex for months, I have alot of depression and my body is slow and unable to do things that were simple before. This week I’m done, 2 days without and all the symptoms of withdrawl are here in mega ways. I really hate life.
Karen says
Thank you for posting. My dr. has abruptly decided to stop prescribing. A neurologist has warned of sudden compulsive influences it can have on people who have had those problems in the past as side effects or whatever.
Because of these posts I am really going to take my time coming off the pramipexole! I hope that this might help me avoid problems later since another dr. is willing to prescribe it.
Nan says
Hello.
I was on dostinex from 1997 to 2005 for infertility. When i stopped the med i started on a downward spiral. So stopping in March by October I was off work, not sleeping at all; zero hours sleep. Suicidal depression, anxiety and generally a terrible mess. No one knew what was wrong with me. I went to many psychiatrists and md’s. Finally a research assistant at UM told me it could have something to do with stopping the dostinex. After many months and many psychiatric meds I took mirtzipan (remeron). It pulled me out of the blackest hole and i slept finally. I was on it for 3 years and gained 50 pounds. Fast forward to 2019 and Ive been on bromocriptine for a pituitary tumor—original diagnosis and I’m terrified to come off this med and repeat what happened over ten years ago. Until tonight—today, this very minute I wasn’t certain that dostinex was the instigator but I am convinced I suffered with this discontinuation syndrome. I pray for anyone who goes through that—it is hell on earth. God be good to all these suffering people. Kindest thoughts, prayers are with you.
Maggy says
If someone suffers from severe restless leg syndrome and stops mirapex what other treatment works. My husband is two weeks out from stopping mirapex .5mg cold turkey. Honestly I am so afraid that he might die. He recently needed a leg amputation and has a heart condition and diabetes. Without mirapex his rls symptoms usually start at six pm and can last six to eight hours when he can then sleep from sheer exhaustion. What can anyone do about the rls….no one can rest with legs moving like wind shield wipers. I am really at my wits in as to what to do to help him. If anyone knows of a SAFE way to treat rls please post the answer
Cate says
I have rls way up to my hip area – what I find helps is a heavy duty massager. It has 2 pulsating heads (be careful as if you press too hard into a fleshy area, your skin can get caught and it really smarts).
The thing I have is kind of loud and not light. But after about 20 minutes of moving the tool (on a high setting) all over the backs of my legs and sides of my calves (on medium to low) it helps a lot. It is as if it confuses the twitching muscles and they just give up for awhile!
I really hope this helps people. I say to dr.s and others how I wouldn’t wish rls on my worst detractor!
Another thing is effervescent magnesium. But be sure to take it with a calcium pill. (The 2 need to be in a certain ratio in the body). I believe the effervescence helps it absorb faster. Like bubbles in champaigne and cola seem to speed alcohol and caffeine absorption – respectively.
Vitamin E and D are also good!
I hope this is helpful.
Lastly, not to be crude, really, but physical intimacy – at its climax, is supposed to give the brain a rise in dopamine. Just sayin’.
Zbirth says
I am on day 5 of a 30 day Mirapex withdrawal. So far I can deal with it but can feel the rumblings of some bad times coming 😱. Has your husband had his Ferritin level checked? I recently had an iron infusion which helps many people. Also check his B levels. After researching on various sites (I’m an old nurse) I asked my Dr to prescribe Oxycodone to take 3x a day during withdrawal. That, plus luckily I have a medical pot card, seem to be making things manageable so far. I made up THC/CBD knockout oil capsules which are doing a good job. I usually get less than 3-4 hours of fractured sleep a night & after taking a capsule I’ve slept 5-6 hrs. Would’ve never believed it!
Camille Nixon says
Hi, My husband had his ferritin levels checked and they are normal, but, his RLS is bad, He has a pot card and has tried smoking the joints that the pot store sold him, but, they are loaded with THC and he complains that they make him too high. The other night he said that the pot didn’t help, either. What ratio of CBD to THC do you recommend to smoke? Would vaping be better on the poor lungs? The oil capsules that you make up, what is the percentage of CBD to THC? He is taking oxycodone, but, we are wondering about the new drug being studied, dipyridamole. Any news on that drug?
Jane H says
Camille, what do you mean by ‘normal’ with regard to ferritin levels? ‘Normal’ for those of us with RLS is not normal. Doctor Buchfuhrer currently advises a level of 300, and Doctor Garcia-Borreguera advises a level of 400. These levels can only be achieved through IV iron infusions. RLS is all about dysregulation of iron in the brain, and without correcting the iron very little will work as it should.
Trials on Dipyridamole continue. The drug is easily available as Persantin, which is an anti-platelet drug, known and used for years. There is little reason not to try it unless one has severe problems with bleeding – but it seems about on a par with aspirin.
CLC says
This is the Facebook page for the group Lee John Pursall started:
https://www.facebook.com/groups/880554155297221/
(When someone’s name is a clickable link, it means they put a web page link in addition to their name and email address.)
I really relate to Renny, but I would never use the word “depression.” Like she and others say, it was nothing like depression. I wasn’t like hell. It was hell.
Like David K I could not sleep in any meaningful way. I could fall asleep by 1 or 2 am and like him, awake at 4am. My heart would be pounding and my mind felt ungodly dread and despair.
I had been on Ritalin and Adderall for a few months and after escaping a fake bipolar diagnosis. The fake bipolar came from Effexor withdrawal. I was on Effexor because my new cancer thought I was crazy for resisting his change to my chemo. I was right, by the way, the change, which was done when 95% of the caner was gone, started t growing again, thank God only one tumor remained at that time. Big surgery and now I only have half of a GI tract.
Anyway, over the course of four years, during which I lost my longterm (9 years) relationship who was also my best friend and the most fun I’ve ever had:
Effexor withdrawal (the nurses forgot to give it to me after another surgery right before the big one) –> mania –> false bipolar diagnosis –> trileptal –> worse mania –> abilify –> akathisia mistaken for mania –> Lithium — severe alcoholism though I was a non-drinker before –> nothing –> Lamictal/Wellbutrin –> happy, skinny, nondrinker, but serious memory problems, as in ‘Left, right? Which is which, and does it really matter?” and then the ADHD drugs. Ritalin + Adderall + Ativan + Prozac –> nervous wreck –> Daytrana (Ritalin skin patch) –> psychosis wth delusions of grandeur, ideas of reference, hallucination, other delusions, absolute insomnia, weight loss, dehydration, seizures –> Daytrana + Effexor –> (add paranoia to previous) –> cold turkey.
Then began the worse to years of my life, at the start of 2013. I drank beer and was consumed with worry and self-disgust but in retrospect, I should have dosed it like a medicine and not worried so much. I got better at the end of 2014 when I started adding A huge heaping tablespoon or virgin coconut oil and a tablespoon of Kerrygold butter to a cup of Trader Joe’s instant coffee. I only did it because I read on the “bulletproof coffee” web site that it could help with memory problems.
Ten days later I realized the morning hell had just stopped. I realized I hadn’t had it for a few days and had just got up and made coffee, for a couple of days in a row, instead of lying in bed dreading the day and cursing the light and begging to cosmos for just ten minutes of sleep. I had lost the alcohol craving, and went from 6 – 12 beers a day to one or two. I could fall asleep. I was still joyless but I was neutral, not despondent. It was amazing and unexpected miracle.
I’m not the same as I was before this all started. I can’t “do” anything except barely keep up with the paperwork and bookkeeping requirements of my bankruptcy filing last fall, which this crap brought about. I had a career and a business and was in love before all this. Now I have 1/3 of the business and almost lost my house and am without my best friend since 2013, who lives just two blocks away. I can’t believe I just discovered DAWS.
“So that’s what it was.”
CLC says
It looks like the medical view within the Parkinson’s Disease (PD) realm is that DAWS develops in people who developed an impulse control disorder (ICD) while on dopamine agonists.
And of course this 2011 paper hints at blaming the patients for ICD…
“male patients with early-onset PD appear to be more susceptible to ICDs, and other predisposing factors – including personality traits, prior dependency on drugs or alcohol and any family history of alcohol or drug abuse – are contentious, but should suggest caution.”
http://www.parkinsons.org.uk/sites/default/files/dawsarticle_macmahon.pdf
I’ll try to find out more and will post it here.
Kim says
Omg. After 12 years of being on Mirapex for severe RLS (330 leg movements per hour according to my initial sleep study) the gambling addiction I’ve developed is causing me to consider stopping this drug. But now? How the hell do I do that with what is sure to be forthcoming? The RLS is enough to cause depression and suicidal thoughts. Now I have this to look forward to?! I’m terrified!!! Please let me know what helps with both the DAWS and the RLS. Thanks. Kim
CLC says
Kim, have you told your doctor, or any doctor? That’s a first step. It’s important that they know about DAWS, especially because it happens to people who got the gambling addiction while on a dopamine agonist. I don’t know if it happens to everyone who develops a gambling addiction–so it’s no reason to panic. At least you’re forewarned and get some help in advance and research survival techniques. Also, you can being diagnosed with a mental illness if DAWS does kick in.
At the end of the article I linked to, in the post before yours, it says this:
Perhaps one could suggest that
this is a suitable topic to be aired at
journal clubs, grand rounds and
other postgraduate events in order
to increase awareness among
colleagues and improve patient
care from both hospitals’ and
patients’ perspectives.
Which is awfully nice to see. Then it says this:
There is a
wealth of up to date information
and resources on ICDs for healthcare
professionals and patients on
the Parkinson’s UK website
http://www.parkinsons.org.uk or by calling
its helpline on 0808 800 0303.
Has anything changed in your situation?
Karen says
Have been through this dopamine antagonist thing with my son. He went off cold turkey, but we managed it quite well. Here are some things that have helped: When the symptoms of withdrawal start coming on, make an amino acid shake (a good one that is not acidic is Natural Factors). That will go in and sweep up the toxins in the system, and give the brain the proteins to rebuild and pick you up. Some days we had to do three or four just to get through the day. Even mowing the lawn would release the medicine back into his system from the muscles, and he’d have to take a shake. As far as the depression goes. Take 5000 mg. to 1000 mg. of Vitamin D3. a day. You will notice almost an immediate response and stay on it for a few weeks until the depression stays away. If the depression comes back, get back on it. It will eventually wear off.
Jacob Dean says
Would love more information about the amino acid shake…how do you make that? Recipe?
Karen says
I’m sorry about the mistake in my previous post. 5000 to 10,000 mg of Vitamin D3 for depression. Not 1000.
Michael Saks says
Please help I recently have been diagnosed with daws after stopping
Miripex due to a gambling problem. I was never told about daws by my neurologist. Are there good days? Does any treatment help?
Lisa S says
Renny/Bryan-
Could you please follow up with your stories? It’s been 3 years and we would like an update. Thank you!
Hart says
I took Mirapex for 7 days for RLS. I then quit due to the side effects. The anxiety, depression, and loss of appetite amazed me considering I was only taking it for one week. I did not sleep for over 72 hours due exacerbated RLS and ended up in the hospital worried that the lack of sleep could cause psychosis. While there they were particularly concerned about my heart arythmia that was caused by the DAWS. They gave me an IV to rehydrate me and Ativan so I could sleep. They knew nothing of DAWS, and provided no additional treatment or advice. Why aren’t the producers of this drug being sued for failure to disclose what is obviously a substantial health risk? Is there a class action of which I am not aware? I actually read the warnings relating to Mirapex before taking it and DAWS was not included.
Natalie D. Davis, CCH says
Hi there,
I just wanted to send you a message of hope as well as wanting to let you know that you’re NOT alone out there with this. Both my boyfriend and myself have suffered with terrible bouts of depression as well as methamphetamine addiction. Of course these are not the same causes for why you’re having DAWS, and why I have had it, but I wanted to let you know I can relate. Those endless crying/sobbing spells and the tremendous depression that makes it so you can barely move let alone want to breathe, and then more crying fits. Sometimes it felt like I wasn’t fit to go out into public because I’d be afraid I’d see something sad and just break down in public. It does go away though. I think it took my brain the longest round of healing when it was caused by methamphetamine abuse, and only maybe about six months when it was caused by discontinuing dextroamphetamine/Adderall. When I once had this syndrome from discontinuing Ritalin, it lasted only maybe 72 hours to a week at most. So it definitely depends on the dopamine agonist that’s causing it (or rather, no longer there to keep it from happening maybe I should say). The drug you’re speaking of I’ve never been on so I can’t exactly give you a very good idea of where it falls in the spectrum regarding recovering from DAWS, but the brain WILL correct itself in time. You just have to lay off all stimulants and let it rest for a good several months to a couple years. It does finally subside though. I wasn’t able to do it without an antidepressant. That’s just me though. You said you didn’t want to go that route which is respectable. I didn’t really have a choice though in my situation and SSRIs actually did help me with DAWS tremendously actually. I hope you get better soon!
D says
I’ve come off of Pramipexole in 2010. To this day, I still have DAWS and after visiting so many psychiatrists, none could help. I attempted suicide many times and got hospitalized and I’ve received 7 sessions of ECT, which didn’t help.
The only relief I got is after I started taking Metformin to counteract weight gain from an antipsychotic which was used to control my depression by making me incredibly numb (Olanzapine).
I currently have no depression to speak of thanks to Metformin, and I no longer need Olanzapine so I quit it. but I still have nightmares, bad sleep quality, excessive fatigue, and incredible emotional flattening and other symptoms of DAWS.
After I was put on Pregabalin + Venlafaxine + low dose levothyroxine, my sleep quality has improved significantly and my fatigue is now very low. Anhedonia (inability to feel pleasure) also improved a lot, but I still have no emotions.
I think DAWS is mainly an insulin-thyroid-cortisol problem. Keep in mind that I’m not suffering from diabetes nor hypothyroidism.
Claire says
I was diagnosed with RLS in 1997. At that time it only affected my lower legs and feet and there was very little knowledge of the condition within UK health care. I was put onto Amitryptoline 60 mg at night to apparently treat the effects of this condition and remained on that medication until 2015. It never helped, but my doctors were all convinced I needed to take it or I was refusing their help, I was called a time waster on many occasions when I called the gp after 4 days and nights without sleep and in agony with severe attacks of the RLS. Overy the years my attacks became far more sever and frequent, changes to diet or habits made no difference, the affect of the RLS was now all the way up both legs, in my lower spine, my arms but worse still in my head – it would feel like I had ants scratching around inside my head – I couldn’t sleep, think or eat. I reached crisis point in January 2015 after 6 days solid of sever RLS and I mean day and night, I was suicidal, I wept and I begged for God to just kill me, “what had I ever done that was so bad for me to deserve this?”. That day my partner called in an emergency gp for a home visit. He was the first gp in all the years that took me seriously. I suffer with chronic osteoarthritis after having endured 7 cycles of chemotherapy to treat ovarian cancer in 2006, so I was no stranger to pain but this was unbearable. He agreed that I had been abandoned in regards to my RLS care and left me with 120mg of Diazepam to administer as prn in 10mg doses every 2 hours to enable me some minor relief and promised to contact my own gp to ensure I received proper therapy. Two days later I was started on a dose of Pramipexole 1 x 0.088mg tablet nightly. The first week I suffered with headaches, nausea, hiccups, an odd sensation almost like I couldn’t get a deep enough breath and lots of yawning all day. It took a good fortnight before the RLS eased and the major attacks became less frequent. All was going reasonably well until August this year when I was informed that I am stage 4 thyroid cancer. The morphine required to control the cancer pain conflicts with the pramipexole causing major issues with blood pressure and fluid retention in my legs, so my gp decided to just stop my pramipexole therapy 2 months ago. I finished the course I had which took me upto the beginning of November and then stopped as instructed. Oh boy was I sick!! Not just nausea but aggressive vomiting, headaches, palpitations, tiredness, anxiety, insomnia, depression but the worst was the RLS came back with a vengeance within 4 days of stopping and my gp wouldn’t put me back on it again, saying my meds were tough on the budget and did I really need them when I’m palliative care (a terminal patient) anyway. I decided that I needed to get away, so we upped and flew out to Portugal (still here as I’m too sick to travel home now) whereupon seeing a doctor here I was instantly put back onto the pramipexole again for my short term comfort if nothing else.
I suppose that despite only having been without the pramipexole for a mere 22 days, it had a drastic effect on my health from withdrawal and I wondered if anyone else suffered from the nausea symptoms on withdrawal the same as me? Not heard anyone mention it, but the gp here in Portugal said that it’s not unheard of with dopamine withdrawal.
No doctor had ever discussed the possible withdrawal effects with me prior to my stopping and certainly never dropped the dose slowly to wean it off.
It appears that attitudes by GPS towards RLS are varied, but most don’t take it seriously at all considering it is a very debilitating condition. It’s good to find a site that has good information and advice and discusses the topic openly.
Nancy Brooks says
I have been on Mirapex for over 10 years supplimenting carba/leva for Parkinsons. Much as I would like to be free of this evil drug I see here that it is possible I never will be. Please add my name to your list of people to contact for any lawsuits forming around this. We must prevent any more people from being started on these bad drugs.
Rich says
I am entering my third year of ropinerole induced DAWS. This thread contains valuable information. Thank you everyone for sharing your stories. My two symptoms are severe panic attacks that are appx 30% psychological and 70% physiological; and tongue protrusion. The only relief I’ve found is a small dose (.5mg) lorazepam which I have stopped because it is not a good long term solution. All of my doctors have been great in reaching out to colleagues for input. The result of every approach, from pharmaceutical (except lorazepam et al) to mindfulness to biofeedback has not resulted in any improvement. My Parkinson’s is like a hangnail compared to the devastation of DAWS. It has brutally effected my social life, my ability to even talk, to solve problems, to listen to or view anything that triggers my passions and interests. There is a possibility that DBS surgery my bring some relief for the tongue protrusion, and I may be a candidate for DBS in the next few years. I have had three Botox injections in my tongue and with a slight benefit but also with loss of pronunciation ability.
Please if anyone has new info on strategies that work for improving DAWS symptoms let me know. Thank you.
Linda Roberts says
Hello fellow sufferers… been on every drug cocktail for rls since 2000.
So tired of being a guinea pig , right now I am taking Requip 5mgs. And Clonodine .1mg. Bid…. every side effect listed, I had!! I cut the Requip in half last night… tho rls pain was horrific but my back feels tighter , like I am being squeezed sooo hard. I had called my primary care provider,and was told…. there is nothing else she could do for me…….. how unprofessional….. I am an RN, and I will not go back to her
I have been waiting to see neurologist… gave me a March 1st appointment!!! I will be in a rubber room way before that…..
in the mean time, I called my former neurologist and got appointment for 2/9/17!!!
I suffer from insomnia… averaging 1to 3 hours at night, wLk around like a zombie, severe rls pains. I even have had 3 episodes of a feeling of ‘doom and gloom’, like I was going to die….so scared of these drugs… what are our doctors doing to us??
I am demanding a strong muscle relaxant, pain medication and maybe something for sleep…. I will wean off the Requip myself… will tel neurologist.
I hVe the most loving and caring husband and I do not know how he puts up with me and the side effects!!!
We need to stand together and band up to Doctors, pharmacies!!
I am a retired RN. Quite aware of opiate problem but I will not take no for an answer!!!
We are the helpless and hopeless…. need to rally up!!
what was that website mentioned??
I have been awake now since 11 pm a night ago…. where is the passionate, caring professionals when we call out for help??
My final rant is: will wake hubby up about 6am and head to nearest ER… I need help, I am beyond desperare and will not take no for an answer!!
Thursday cannot get here soon enough!!
Best of luck to you all, I sympathize with everyone… education of our problem is done by us, not our care givers…. what is wrong with this picture!!!
Jinny says
I am trying to come off quinigolide and my life is hell. I nearly lost my job last week. I felt suicidal and was having panic attacks sweats. My legs arms and back hurt. I am having problems passing urine.
Wendy says
Hi, after 20 years of 4 hours sleep ( if I was lucky ) I finally went to the Drs with rls, I was prescribed pramipexole which I started taking that night. OMG I slept all night, it was like I had got my life back, I raved about this drug and for 2 weeks I felt ‘normal’. I’ve now been on them 6 months but I have had to double my dose. I am constantly tired, my libido has just about vanished and I now have a ‘don’t give a dam attitude ‘. My husband is blaming all this on my medication. The exhaustion I’m feeling now is far greater than the exhaustion I ever felt through lack of sleep. I have decided to come off them but reading all of the above I am now scared of the outcome, especially as I already suffer from depression.
Any advice please
Kristin Naccari says
Hello to all. I thought I was suffering horribly until I read all of your cries for help. Here’s my story which should explain how I got here….. perhaps we can be of help to one another. Actually I have been researching extensively for about 5 months now and taking copious notes on different ideas and possibilities to help myself with my problem which I believe to have been caused because of an atypical antipsychotic known as Zyprexa. Zyprexa is also a dopamine agonist as well as doing something to serotonin. Okay, my history: Severe treatment resistant Major Depression, complex PTSD, Generalized Anxiety Disorder, and ADD. For twenty years now they have not been able to help me with any medication whatsoever. Counseling has been next to No Help because I’m too sick to make lasting changes in my behavior. So, about 2 years ago, my psychiatrist decided to start trying me on atypical antipsychotics. I’ve had insane debilitating reactions to at least 5 of them. Then she prescribed yet another one: Zyprexa. Finally I had found the miracle drug; the missing piece. It completely knocked out all of my anxiety and I stopped feeling suicidal. However, I slowly turned into a Zombie. And lost all of my libido, and all motivation to do anything at all. I was completely content to be in bed all day, wide awake, just staring at the wall. My psychologist says it was the worst Anhedonia she has ever seen in a patient. My psychiatrist and I decided I needed to withdraw off of the Zyprexa. Zyprexa withdrawal was LIVING HELL and took 6 months for me to achieve. Slowly, during that process, my personality came back and so did my Anxiety. However the anxiety quickly took a turn for the worse. I have now become a RAGING MAD lunatic, of sorts. I am constantly biting and chewing my nails, pulling out tons of my hair, or scraping my tongue over my sharpest tooth til it bleeds. About 8 weeks ago is when the uncontrollable rage kicked in. I am now an Emotionally abusive mother and daughter. Because no matter how many times I tell myself to stay calm, it never helps. Not only am I screaming at the top of my lungs, all the time, I am also saying horrible things, mean and nasty things, to the people I love the most on an everyday basis. Before the Zyprexa, I was just very anxious all the time, but I was able, for the most part, to control my habits and my temper. I am positive deep down in my soul that Zyprexa ripped my central nervous system to threads. My anxiety is now torturing me and my family and I cry all the time. Agitation is really the best word to describe this type of anxiety. Agitation that has turned me into a possessed beast! But when I read what everyone here has gone through or is going through, I can easily see that I could be worse! My heart goes out to all of you and I sincerely pray you have found some relief! Please, if you have found some way to help or alleviate your symptoms and suffering, please let all of us know. Any ideas are better than no ideas, right? After months of research I haven’t got very far at all. I’ve actually got lots of ideas, however, they all cost money except for four of them, and I haven’t even given any of them a really good try yet. The first idea is gentle exercise combined with very simple weight lifting. The second is to exercise extremely hard and fast for an hour everyday and sweat so much that my clothes are wet when I am done. (I completely loathe this idea.). The third idea is sunlight…. 20-30 minutes every single day. I know some of you may be way to ill to do any of these. And it’s almost winter right now for many of us and it’s already cold. So technically I need to purchase one of those bright full spectrum lights. I’m pretty sure the real deal will be too expensive for me at this time. So I have to nix idea #3. But idea #4 is to make myself drink a ton of water everyday. I can’t believe I haven’t made myself try any of these ideas yet. I feel stupid and lazy. But also, I don’t think any of my ideas will work. I REALLY DON’T! But I haven’t proven myself wrong. So now I have no choice. I’ll work on an action plan tonight. So…as far as my research goes…. I’m taking (on top of all the other psyche meds I still take) 1.Ashwaghanda 2. Ubiquinol. My studies have given me reason to believe that these might heal my nervous system . At night, I take 200 mg of Taurine, and 100 mg of L-theanine. I’m currently questioning whether or not the Taurine is a good idea or not. Please research these 4 things and maybe give one a try. I’m going to go back through every one of these comments and write down any possible ideas and research further. I’m going to check for a DAWS support group on Facebook as well as do a google search for one. Oh! I forgot about the MOST important supplement I’m taking! Magnesium Glycinate. Nearly everyone is very deficient in all the different types of Magnesium! But Mag Glycinate is suppose to be very good for Anxiety. Light, peace, and healing to all! I believe there is a way to reverse the damage that has been done. I hope to hear from some of y’all. I’m very interested in knowing why the human body develops Restless Leg Syndrome now. So I will research that as well! Contact me at krisaline1@gmail.com for further discussion. I am going to start a blog soon. Plus I’ll check back here often. Thanku for reading this!
Boot says
I have Parkinson’s and have been on mirapex for two months. Last week I warned myself off to see if I can live with my symptoms for now without meds. It’s been a week and so far no trouble that I can see. Can parkies get this DAWS too?
Anne says
Thank you all for sharing your experiences. The hardest thing I have ever witnessed is my husband going off of ropinerole for RLS. He is doing this through Johns Hopkins who has given him very little support and frequently has not returned phone calls.
We began this journey in August 2018 when he started the process of tapering off the medication. Johns Hopkins was very specific about the first 10 days of being drug free and it is exactly as you all have said. They were very vague about the 6 weeks it took him to get to these drug free days. In retrospect he wishes he had just moved through those weeks much faster. During these 10 drug free days the symptoms are worse and also very different; and the intensity has increased. On day 6 we thought he had turned a corner and actually got 5 hours of solid sleep with very little pain. Since then, (we are now on day 8), he hasn’t slept and the pain and spasms are just as intense as they were on day 2.
Question-has anyone also done this through Johns Hopkins? How was your experience?
Mari says
Hi All,
you were asking to report DAWS, so here is my story. I’m 34, from Hungary. (Sorry for any mistakes in my English.)
I have a prolactinoma, which is a benign tumor in the brain. I was diagnosed almost 5 years ago, when I was prescribed Bromocriptine 2,5mg. I had to take 1,5 pills each day for the last 5 years. At the beginning, it had terrible side-effects, like vomiting, nausea, dizziness, almost fainting, disturbed sleep. Slowly, I got used to it, and these went away, except for orthostatic hypotension and Raynaud’s syndrome. Sometimes, I would have problems with sleeping, but it was not always.
January, this year, I had a really stressful period (I lost my job twice in 3 months), and so decided to taper the dose to 1 pill, thinking that a little less of a drug with a thousand side-effects might do some good to my mood. During this stressful period, I had trouble sleeping, and had panic attacks at night. The tapering of the dose didn’t help, I still had the same night-time problems, moreover… But I put it down to being through some stress.
However, this period finished, I got a new job, everything became relatively calm – and still, I was having anxiety all of the time. And I mean ALL of the time! I was scared to meet new people, to the extent that I couldn’t do shopping! I went to work, went home, and tried to get over my feeling of not being myself. But I couldn’t… It made me terribly depressed… But the worst was the pain. I cannot really describe it, I felt it in my stomach and my chest ALL the time! It became sharp in the mornings, then a little duller, and again sharp during the night. If I turned to my stomach, it became a bit better, but nothing else helped, and even that barely…
Then the time for the next blood test came, and my Prolactine was all over the place. Slowly, I started to put the pieces together (with the help of google), that I basically, have withdrawal syndrome! My endocrinologist of course had no idea such a thing could happen, she told me, people just put Bromo down, more easily than cigarette, there’s no trouble with it… Finally, she prescribed Norprolac (quinagolide), and the thing is that it has similar side effects that Bromo had early on when I was still getting used to getting the surges of dopamine through a pill. For me, who was taking Bromo as if it was sugar-candy in the last years, renewed side-effects mean that I became unused to dopamine in the last months by taking a smaller dose, and this corroborates to the theory of having a withdrawal syndrome. I don’t know what would happen with Norprolac later on…
Now, that most of the anxiety and the terrible pain is gone, and I have only the side-effects of the new drug to get used to, I have to face the fact that I AM a drug addict! And that I cannot even try to quit, because the tumor in my head needs this drug to keep it in check! How do you get over such a predicament? I don’t have anybody to talk about it. I go to a therapist twice a week, but even he cannot understand this and cannot help. Luckily, I’m a terribly rational person. If I feel anxious or depressed, I tell myself that it’s just the drugs in my head, so I don’t get to a point of desperation or being suicidal (I read that this might also happen…) I know I’ll survive this! I just feel a little alone, that’s all.
Good luck in your lives! I hope all of us will recover one day!
Karin says
This has been a horrible experience for me. Like a lot of you it starts out great. Something to finally get some relief from RLS. Then you have to take more, and more, and more. I started on Requip in 2007. Had to up the dose. After that quit working and I had such vivid dreams I couldnt take it anymore, My doc tried Carb/Levo. That was 2010. Tried and tried but just did not work well enough. Here comes 2012. Doc puts me on Pramipexole (mirapex) . Starts out .5 mg once a day. by the end of 2012 it is .5mg 2X a day. Seems to work but never enough. Legs still twitching and sore. Feet feel like someone is touching them from the inside. Of course all you can do is walk. No sleep. You are useless. What a horrible time. Doc then ups the meds to .5 mg 4 X a day in 2015. Again works for a bit then nothing. In 2016 doc ups it to 1.5 mg 3X a day. I have had enough. I could not take that much. I would usually just take one or break one in half. Again stops working. Enter 2019. I stop taking altogether. Jan 9 2019. I am going through the most horrible withdrawals I have ever known. Horrible anxiety, Chest racing, chest hot. I cant do ANYTHING. Cry all the time. Thank God I found this and now know about DAWS. I have been talking to my doc and trying to find ways to cope. This is pure HELL. I am sorry that anyone has to go through this. Would love to talk to anyone about it.
Patty says
Hi Karin. I too suffer from severe RLS. I made the decision to go off this horrifying dangerous drug. Since doing so like you and so many my life is like a Hell I’ve never know. Forget sleeping….. Cry? All day. The minute I get up I cry. I don’t know how I’m going to make it through another day. I think about suicide all the time. It’s not normal to live with no joy and nothing but this feeling that has taken your soul. It’s not right that this drug is allowed out there. I was never told about the dangers of going off the drug. The horrible thing is, no one seems to know what you can do to get relief. Does anyone know of a support group anywhere in Massachusetts?
Thanks. Prayers to all.
Jane H says
So sorry Karin. That dose of pramipexole is absolutely criminally high. The current maximum – from the real experts – is 0.25mg per day.
It is no wonder you are suffering so much.
The same experts I speak of would wean you off with a low-dose opioid, then try gabapentin or pregabalin.
There is no knowing if you can escape DAWS, but if you had no pre-existing compulsive/obsessive behaviours (however mild) it seems unlikely.
Patty Fiore Alvarado says
To Renny.
I could be you. I had been on Pramipexole for over 20 years. No one told me about the dangers of the the compulsive behaviors or the addiction Pramipexole causes you to have to it . Didn’t really find out until 5 years ago that the medication does in fact cause this. My problem was gambling. It finally started to interfere with me paying my bills. I have severe RLS and thought I would never go off of it. It was time, before I runied my life.
As someone said “they got sucker punched by DAWS”. SO DID I !! Over and over and over again. I went to my doctors and started therapy again because I was ready to commit myself. I too have suffered with depression but it comes and goes and for the most part under control. However, I kept repeating over and over “THIS IS DIFFERENTSomething is wrong. I also called crisis hotline. Just talked. Alot of people just look at you and think, oh your just depressed. Go see a Psychologists. They don’t get it!!!! It frustrates me so much. Just what I need, another drug. This is like a Hell I’ve never been through before. I have handeld a lot over my 63 years but this DAWS is just ‘EVIL” in what it does to you. I, like Renny, feel I have no controll over me, my feelings, emotions , my body, mind, sleep, action and thoughts to name a few. I’m just there. The depression , saddness and worse NO FEELINGS are horrific. I cry every morning as soon as I open my eyes when I realise it’s still there. I joined the “Y” but I can’t get myself dressed or excited to go there. I went out to a fundraiser my friend was hosting. I love, love music. Great band. I’m dancing because my friend made me when I noticed everyone around me was smiling, laughing out loud and just showing emotions. I felt like I was in a dream and not connect or part of the group. I FELT NOTHING!!! I left before I started to cry.
I too have suicidal ideations every day. I can’t imagine living like this for to much longer. It’s been 2 months and I don’t know what to do or where to go for real help. Please, someone tell me where or what you have done to get help and relief.
THANK YOU,
Patty
I NEED AND WANT MY LIFE AND ME BACK!!!!
Andy says
I never took any agonist drugs or anything pharmaceutical, however I am suffering from DAWS. Mine comes from Video Game Addiction. 5 years ago, I felt like my gaming had become obsessive, so I quit. Within the next few weeks, I started to have dizzy spells, depression, anxiety. Two months in, the panic attacks started. I couldn’t sleep and I was plagued by the depression and anxiety. The worse was the feeling of disassociation from my surroundings, like I was watching myself go through life instead of living it. About 7 months later, after working out constantly and using meditation and yoga to relax, my symptoms faded entirely. At the time however, I didn’t realize it was the video games that had caused the issue. About 6 months later, I started playing games again and got sucked right back in. I played for three years and again noticed that I was playing way to much and had become addicted to them again.
I quit playing. Within a couple of weeks I started to experience the dizzyness again. A couple of minor bouts of anxiety. Then two months in, I woke up with a crippling panic attack, followed by anxiety, depression, sleeplessness, disassociation, suicidal ideation and hyper sexuality. I was constantly being bombarded with disturbing images of my suicide (which I do not want to commit) and sexual acts I don’t want to engage in. It has been nothing short of a nightmare. It has been 4 months now since the attacks started again. Luckily, I can report that things are slowly getting better. I didn’t sleep for almost a month, but now I can usually sleep through the night. It has been over a month now since I have taken anything to aid my sleep. The panic attacks have mostly faded, but they can rear up again when my mind throws random disturbing thoughts into my brain. They seem to mostly happen at night however, when I am trying to sleep. Things seem to have settled into a cycle. I have 3-5 ‘good days’ where I feel like myself and like I have my life back, then 2-4 ‘bad days’ where the depression, anxiety, suicidal ideation and compulsive behavior ramp up, peak and then start to settle down again. The periods of good days seem to be getting longer, and the intensity of the bad days seems to be diminishing. I know there isn’t much that can be done. It was both terrifying and en-heartening to read through these posts. I felt I had to post something in response, if only to foster some hope, or to bring attention that this could be caused by video game addiction instead of drugs.
The games that caused the problem for me were card games such as Hearthstone and Eternal.
Good luck everyone. Peace, calm and tranquility.
Albert says
I want to try prami in order to combat the (seemingly) permanent anhedonia that discontinuing SSRI’S left me with 6 years ago. However DAWS does worry me quite a lot.
Does anyone know, is it true that DAWS only occurs in parkinsons patients? I need to feel joy again or there is no point in being alive. This drug has gave people their lives back after experiencing the horror of psychiatric medications.
Elizabeth says
I just lost my brother, he committed suicide..he was diagnosed with parkinson’s disease 8 years ago and was taking a few meds incl. madopar and sifrol. He had dbs about 3 years ago.
He was struggling physically and his electricity levels were probably too high, trying to keep working part-time.
His behaviour started to change about 6 mths ago..he joined a dating site and then this focus intensified over the months, a lot of money was wasted on various sites. We now know it was a side effect of sifrol called hypersexuality.
His wife left unable to manage their budget with his secretive spending.
The first meltdown occurred, he drank a lot of alcohol, took a lot of medication and hoped to die.
He went into hospital..he was like an ice addict..agitated, smoking non stop, having obsessive thoughts, was sometimes aggressive, angry, verbally abusive, he had a loss of impulse control etc.
The doctors dropped the electricity and started to drop the dosage of Sifrol. His PD symptoms got worse but the obsessive thoughts continued. Sifrol can take months to get out of your system and brain and it can’t be stopped immediately..given the emergency, they were reducing the dosage quickly.
He was released…the obsessive thoughts had him back in chat rooms until the money was gone.. $600 in one evening….
then he’d be calling people begging for money for cigarettes. It was very hard to help him and keep him stable.
He took more pills and cut himself..he went back into hospital..scheduled this time.
He was angry about the hospitalization, he thought he was fine. Only one family member continued to visit him..the rest were afraid of him. He was successful with the third attempt..took his own life in hospital.
The loss of impulse control makes suicide more likely.
Sifrol changed my brother…no longer the easy going, gentle and kind man…and it took his life.
It was incredibly traumatic to see someone you love so out of control and feel powerless to help.
Be careful with sifrol..for the 10-15% of patients who develop these horrific side effects..marriage breakdown, bankriptcy and death is often the end result.
Kimberly says
Hello my brave sufferers survivors and victims.
I’m a month into severe and debilitating withdrawl from 4+ years of Abilify cold turkey. My doctor refused to help me come off it, and increased my dose.
Not long after the dose increase I just felt I would disappear entirely from myself if I continued to take that sinister drug, so I quit.
I was prescribed Abilify after a significant and complete psychotic break. When they prescribed the Abilify, I was still far too ill to understand the implications of taking Abilify, and the side effects and possible damage was never discussed with me. I was literally like an innocent child just accepting what they handed me because they told me it would make the terror go away.
And it did. It was a revelation at first. A miracle.
But it was to destroy all that I was methodically and slowly, subtly. The first year I gained 80lbs. By the second year my mental acuity was so impaired I could barely function. By year 3 there was little left of me and I survived by appearing to be doing well, and occasionally hoping that maybe I was.
Finally, with the psychosis breaking thru in terrifying and confusing epidsodes, the depression complete and paralyzing, and the anxiety unbearable, I began to fully unravel toward death.
It struck me suddenly one afternoon that this pill was killing what was left of me. I secretly quit taking Abilify that day. I will NEVER take that chemical cage into my poor body again.
I was SO SO SICK 4 years ago, and I trusted and I took their pill and shut up, as was the intent. I’ll never forget that first month on Abilify – I was so free, so happy, so full of hope that I would fully recover from my terrifying collapse. But it was not meant to be…
Tonight, I sit alone, reminding myself that the voices I hear all around me aren’t real, that the things I see moving menacingly out my windows aren’t real and can’t hurt me, and that though I’m nearly 100lbs heavier now, though my brain is sluggish and dull or spinning and frantic, though I’m uncertain whether I’m capable of feeling anything or have just become very adept at faking it, that though I may never recover and feel the goodness and vibrance of my own being again – somehow, I am worth saving, I deserve to live, and maybe I’m more than just an ugly burden to those who love me.
Thank you all for sharing your experiences and for helping me to feel like maybe I belong somewhere, and maybe, just maybe
There’s Hope.
Lenna says
I have been taking Pramipexole for nearly two years now. I have wanted to get off it many times because I suspected it was actually making me worse, but every time I tried I couldn’t do it. My RLS got so bad I’d get out of bed and take it. Last night I tried again. I read enough to know I could quit the dose I was on without tapering. But I went so crazy with symptoms that I take a one-third dose just to help me cope. I didn’t sleep much. When morning came, my leg muscles were feeling rigid and one leg spasmed badly. When it does that, there is nothing I can do but stand there and grit my teeth. Then I sit in an Epsom salt bath and hope it helps. One thing I believe has contributed to my horrible RLS symptoms is the discovery that I am truly sensitive to EMFs, particularly radiation frequencies. We have tested me thoroughly and there is no doubt that the sensitivity is truly there. It’s agonizing and one of the worst symptoms is the feeling of electrical sensations that builds in my legs and eventually my arms when I am around cell phones, cell towers, and WiFi. So it’s hard to tell if that is the actual cause of my RLS, or if I have RLS on top of my sensitivity. Pramipexole (Mirapex) seems to multiply my electrical feelings, so I need to get off of it. And I can’t help wondering how many of us are suffering from RLS that is primarily caused by an unknown sensitivity to radiation frequencies that no one can escape from anymore.
JoniR says
I started taking Meripex (Pramipexole) years ago. Because of my pre-existing and current diagnoses we did not even look at the possibility I could be having side-effects from Meripex. I started taking it prn for RLS and it was effective and just wasn’t on my (or my dr’s) radar for problems. We slowly, over the years, increased my dose whenever it wasn’t working as well. Then it was suggested by a Physician’s Assistant I was seeing (that worked for my Dr) that I just start taking it on a regular daily dose.
I have been on that reg dose for about 4 years. About a week ago I had a mix up in getting my prescription for it. We either lost a bottle with a 3-month supply in it or the pharmacy made a mistake on their end and I didn’t really get it. We have turned our house upside-down ….in either case I don’t have any and just quit taking it thinking it to be a benign med for RLS. Ha! no such thing as benign!
I have had the withdrawals from Hell! Extreme restlessness with a feeling like being electrocuted and even muscle pain, cramps and charly-horses.(running up and down my legs from my hips to my toes. settling in my ankles alot ) ! My daughter says it sounds like an extreme withdrawal reaction she had with an antidepressant and she calls it BRAIN SHIVERS ) My feet are burning up like electrical current is running right out the bottoms) and electric like pins&needles.
Just as I start to relax enough to sleep I have these symptoms “jump” on me again nearly making me leap off the sofa or bed. I get jerks and jumps I can’t control and are painful. Then I just fall asleep as my husband describes it. I call it dropping into a coma. I don’t know it happens or happened until I’m coming out of it (or waking up)
A fact sheet I found in MedlinePlus for pramipexole was very informative for me. I have had some depression but not what you describe yet I am only a week into withdrawal. I am sure you all know the facts of what this drug treats (one is Parkinsons) I had no idea. My side effects right now are extreme, the worse being RLS that is increased to 100% + what I was being treated for. Nothing seems to help and after all my research I’ll be damned if I will take that drug again. Also among other side effects the one of taking it, not withdrawals. This paragraph describes this side-effect from the fact sheet. (a problem I’ve had that several specialists have not been able to help me with:
“You should know that pramipexole may make you drowsy or may cause you to suddenly fall asleep during your regular daily activities. You might not feel drowsy before you suddenly fall asleep. If you suddenly fall asleep: Do Not……(warnings what not to do while experiencing this side-effect) If you suddenly fall asleep while doing something such as watching TV you should call a dr.” ect ect
Well that is just not descriptive enough. I have something like narcolepsy.(as I have previously described) I fall asleep in the shower, riding in the car, talking to family on the sofa, standing and doing dishes. I don’t drive (obviously), I don’t do anything without someone with me. It comes on sudden without warning and I don’t know anything until I wake up and then I know it was not a normal “nap”! I have left specialists scratching their heads. One neurologist thought I might have MS.(I don’t) I do now have peripheral neuropathy and permanent nerve problems in my feet and ankles and starting in my hands and wrists. I have “sleep disturbances” and bad RLS. It goes on and on.
I now lay most of my problems I didn’t have before using Meripex right on the doorstep of this evil drug. (for me it’s evil anyway)
I’m still trying to survive withdrawals so please think kind thoughts for me and if you do pray, please Pray for all of us “victims”
I apologize for the long comment..
Jacob Dean says
I’ve been on Pramipexole/Mirapex for about 8 years for terrible restless legs. I realized it contributed to impulsivity, addiction, and made my ADHD worse. I’ve been trying to go off of it for months now, with little success. I’ve been able to taper down to half of the dosage I used to take, so there is some hope. But I do get bad nights every few days where I feel like it isn’t working. I feel hopeless.
Mike Mickelson says
My wife is suffering as we speak. She is currently on Effexor, Wellbutrin, and Lexapro. After 4-6 weeks she was back to “normal” but has suddenly had a setback. The uncontrollable depression is horrible. Like you, she cannot stop sobbing.
Jamie M. says
I’ve been on 1 mg Mirapex for seven years. I’ve gained weight, misspent money, amassed an insanely large comic book collection to the detriment of my family, entered in to risky stock deals and sexual encounters, drank far too much far too often, to name just a few things. I’ve made attempts to wean off in fits and starts for years, without success. It’s a testament to how horrible and torturous the RLS is that I’ve not not been more assertive in talking to my doctor, because the specter of life with this medication is terrifying, but so is continuing on like like this.
In the past six weeks, I’ve managed to go down to .75 mg a night. Not much but in the direction, and last night I took .5 mg for the first time. I feel very on edge and impatient, but I’ll take it. The only thing that has helped me get down is cannibas. I’ve eaten it and smoked it before bed at night. It gives me a feeling of warmth and relaxation in my legs. I still can feel the RLS right under the surface, but I can usually manage to get to sleep, which will last all night if I’m lucky or usually three or four hours. I’ve set up a follow up appointment with my neurologist for next week. Earlier, when I met her for the first time six months ago, she told me my case was very complicated and that it’s very difficult to stop Mirapex, and that it would be better if I were under the care of a psychiatrist first. I have no problem with that, but I can’t help feeling like the behaviors others views as cause for psychiatric treatment are actually borne of Mirapex side effects. In other words, why are treating side effects? Help get me off the drug and then chances are, I’m not acting like this.
I have read and reread this page so many times because probably like so many, I’m not looking for answers as much as I’m seeking hope. I don’t have a lot right now. Buy I’m trying. I scout online at night, wondering if anybody has been able to stop. I suppose so and that maybe they don’t come back here. Anyway, I truly wish the very best to all of you. This struggle is so unfair and cruel.
Jane says
I rather think that if you go to a psychiatrist you will be stuck with the psychiatric label. That is the last thing you need.
Your difficulties are classic dopamine agonist augmentation.
You need a good neurologist who can assist you with weaning off MIrapex while going on to something less harmful. In the short term, the way off may be with a low-dose opioid while trying gabapentin or pregabalin.
There are only three classes of drug that really help – the dopamine agonists, which are proving more and more dangerous, gabapentin/pregabalin, and low-dose opioids.
https://www.mayoclinicproceedings.org/article/S0025-6196(17)30825-X/fulltext
This is an article on the use of opioids, written by the best specialists on the planet.
Ruth E says
June this year i was hospitalised for a week for suicidality in a female psychiatric hospital, pramipexole almost destroyed me , and my marriage, i basically experienced what i now know to be severe hypersexuality, risky behaviour involving sleeping with random men, women, and couples !!!, i have always been 100% heterosexual!!. I also developed a severe pornography addiction. I broke down in June and told my husband everything, he had no idea, though he had stated on several occasions that my sex drive with him had dramatically increased. Was assessed by psychiatrist who explained it was all undoubtedly down to the high dose of pramipexole i was on for restless legs syndrome. I tapered off the pramipexole and within few weeks my sex drive had normalised. Luckliy my husband has been able to acknowledge the cause and we are still together.
Ben says
Is it possible to go into DAWS from only 8 days of use?? I stopped recently and am having muscle spasms and worsening of depression.
Tom says
I took prmipexole for just over nine years. I suffered augmentation from about year 6. Didn’t know what it was or how to deal with it.
It was severe, with all the signs, earlier in the day, spread to other body parts etc.
I withdrew from pramipexole over about ten months and replaced it with gabapentin.
I have been taking gabapentin only for just over two years and have rarely experienced any RLS symptoms at all since then.
I never suffered an ICD and I never suffered DAWS.
However, when I do have an episode of RLS, it isn’t very intense, it doesn’t last long, (a few minutes), BUT it can occur anytime of day or night and affects my arms and shoulders as well as my legs.
Mike says
Dr. Healy,
The cannabis we have used started with the “gummies” from the dispensary near our home. She tried these in the fall. They lightened her mood and helped her worry less. Made her “giddy” My brother, who has a lot of experience with cannabis 😬, made some homemade cannabis oil to use for cooking. This is the “good stuff” as he likes to say, not the regulated stuff. We made muffins and brownies with this oil. The dosing takes some experimenting. My wife said they made her feel stoned, although she has never been stoned so she is guessing as to how that feels. She was in slow motion. The effect did last longer than the gummies. Although it took longer for the effects to show. She stopped using them as she was changing meds and didn’t want to confuse the effects of what was working. She has just started eating some of the brownies in small doses as she has no appetite. It has helped with her appetite and lessened her anxiety. Feel free to email me.
Mary says
I just found this message thread and so much of what people are saying, I had no idea what a horrible drug Mirapex was until I stopped it. I was prescribed it “off label” for depression. My now former shrink who prescribed it, said “I have another patient who swears by Mirapex!” (for lifting her depression). The shrink touting it to me as some “miracle cure” for depression. Little did I know about this drug! For me, if there was any alleviation of depression, it lasted only a week or two, maximum. I noticed right away while taking Mirapex that I was consistently having a clenched jaw, the feeling that I was about to start grinding my teeth, the metallic taste in my mouth. After taking .25 mg a day for two months, I stopped taking it abruptly. Instantly, it was taking forever to fall asleep at night, and rather than restless leg syndrome, I had a whole restless BODY syndrome. Then came all the stiffness, aches, and often, downright pain all over my whole legs, everything from the waist down, hurting, all the way down to my ankles and feet. I have been losing hair as well, and now have researched that yes, dopamine agonists can cause alopecia. To make all of this worse, my now former shrink, who never should have prescribed this Mirapex for me, made a big control game out of returning my calls asking for help and information about DAWS and the withdrawal from Mirapex. I needed help and instead got another ration of his control issues thrown in my face. I have had to rely on researching online for reassurance that Mirapex does indeed cause these problems. No help from the now former shrink. In addition, I am a recovering alcoholic, sober since 1984, reading about the impulse control issues that Mirapex causes, as a sober, recovering alcoholic I never should have been advised to take Mirapex!! I am hoping that since I was on what I hope was a low dose for a short period of time, things will improve.
David says
I’ve taken 1mg Neupro DA for RLS for a few years and due to issues getting a refill and new rebate coupon I missed 8 days of dosages, and I’ve got major DAWS symptoms. It’s truly horrible. Seems that the fact that I started taking the drug again didn’t help the withdrawal. I had to admit myself to the psychiatric hospital because I was suicidal, and I had 13 ECT treatments, and got put on some meds, and am still suffering from extreme anxiety, depression and crying spells. I meet with my neurologist tomorrow, and I have no idea if he’ll have any solutions. He never told me of the risks of this med, or the danger of missing a dosage, and had I known I would never have taken it in the first place. I’m deflated.
Gaither Stephens says
I am currently suffering from DAWS. I was misprescribed 1.5mg Mirapex for restless legs and tried switching to another dopamine agonist but at a lower dose and was in bed for 3 days barely able to function. After a few months, I was able to go down to .75mg of Mirapex and I’m close to a week at .375mg right now, but it’s very tough. I want to get this drug out of my system and stop being dependent on it. I would not recommend anyone use this drug ever.
cheri says
I withdrew off Mirapex Feb 1, 2021 after augmenting. It’s ruined my life. The neurology dept at my hospital is full of pride but outdated in its facts. I’ve been told I’m lying. Prescribed additional DAs even though I was clear about not taking them.
I think most doctors don’t care and are more worried about status than healing.
I feel useless, gaslighted, disrespected.
I see no hope. I was an idiot to trust.
Dr. David Healy says
Cheri
This heartfelt comments seems very much on the money. Medicine has gotten derailed.
David
Andrew says
I have had restless legs for years, but the last 4 years have been the worst. (im not even sure it is restless legs) I cant describe the pain and feeling, but i can get it in either one or both legs, and sometimes my arms. It always comes around 7pm and can last from 2 hours to all night, where I dont sleep at all. The only thing that helps is a warm bath, I have had up to 5 baths in a night, I want to sleep, but cant due to the strange pain/feelings.
I have been on Pramipexole/Mirapex for over 2.5 years, i don’t think it helps at all. So last night i have decided to come straight off it. I didn’t sleep at all and was up all night with restless legs. I’m going to stay off the pills as long as I can as i don’t know if it was coming off the pills that made me feel this bad, or if the pills were actually working and my restless legs are worst than i thought!
The only thing that seem to work is a bath and 2 co-codamols…
Its strange as soon as i think about it, my restless legs start?? If I’m doing stuff and my mind isn’t thinking about it, i don’t seem to suffer….strange??
Starr clem says
I would like to become a part of this blog site. I will take the time soon to share my dilemma & what I am realizing about pramapexole
Augmentation & DAWS which I am now battling.
Starr Clem
Rob says
I was on a light dose of Dostinex for over 20 years for a prolactinoma. My Endocrinologist thought we should stop and see how things go without it. Within two weeks the symptoms began. Sudden weak legs, shaky, extreme spikes in blood pressure, feeling faint, intermittent (extreme) weak spells, panic attacks.
Never heard of DAWS. I learned of it on Google after a couple weeks of these debilitating symptoms.
I had an MRI and a CT looking for MS, tumor etc. All clear. I also had extensive blood work. Also normal.
A warning about the DAWS thing would have saved a lot of needless test not to mention the anxiety it caused.
Back on the Dostinex and 90% better, hopefully 100% soon. Obviously I’d rather not be drug dependent but it’s better than feeling like that.
Vicki says
My sympathy to everyone out there going through this hell!! I too am a victim of pramipexole. I had been taking it for about 10 years when I felt like I had to stop due to increased RLS episodes and severe sweating to name a few reasons. My doctor thought I was crazy. I decreased my doses gradually and stopped completely 3 months ago. I have been living in hell ever since. My RLS has now kept me from sleeping this whole time. I catch maybe an hour of sleep here and there. I ended up in the emergency room 2 months ago because at that point I hadnt slept more than 20 minutes at a time. I thought I would lose my mind. What has bothered me the most is the doctors’ attitudes. Even in the ER they treated me like a drug addict off the street. A doctor did this to me and now I will probably pay for it the rest of my life. I also have ringing in my ears, my hair is falling out and lots of neuropathy. This is hell on my husband too who can do nothing to help. God help us all!!
Ian says
Hi everyone reading this. This seems to be one of the few pages on the internet where you can actually read about people’s experience of DAWS and I can totally relate to how much people are suffering. Mine is not related to RLS but I had an experimental treatment for chronic fatigue syndrome which is low dose naltrexone (LDN). It is supposed to inhibit neuroinflammation but also it temporarily blocks opioid receptors for a few hours each day so your body tries to compensate by producing more, so there is a dopaminergic or dopamine agonist effect albeit indirectly. Anyway I didn’t feel any benefit, only massive headaches, crazy dreams and waking up feeling upset for no reason. Other LDN users insisted that these were temporary side effects which would pass and then my CFS would greatly improve. It didn’t, and so after 6 months I quit. I had terrible aches and fatigue for a week then they passed. A month later I woke up one day feeling utterly numb and everything felt unreal like a film playing in front of me. I did my best to carry on living as normal but then suddenly I was filled with a terrible feeling of dread and fear that followed me everywhere. My muscles were tense with nervous tension and I couldn’t relax and focus on any task or feel pleasure from any activity. I also developed PTSD type symptoms where a completely innocent banging noise would make me feel so intolerably anxious that I just wanted to cry and run away and hide somewhere. Any time this happened I would spend the next couple of days fixated on that triggering event, permanently ruminating and trying to prepare myself mentally for when it might happen again. I was incapable of having pleasant comforting thoughts which we all do when daydreaming, there was only emptiness and fear and utter dread. I was afraid to be around people but also afraid to be alone with my thoughts. It’s been three and a half years so far and while I have improved I’m still not myself and have to live with almost constant anxiety and fear of triggering events.
I wanted to share one thing which has helped me and made a noticeable improvement in how I feel, and that is L-tyrosine supplements. I take one capsule (500mg) half an hour before food in the morning and as it is a precursor to Dopamine it is converted and gives you a slight boost for the rest of the day. Other nootropic experimenters use it for focus and calm etc. I think it’s unlikely to exacerbate the problem as it’s an amino acid which occurs in many foods and the conversion to dopamine is limited by an enzyme. I just wanted to share this information with anyone who is desperate for a solution as this has actually made life bearable for me after 3 years of not being sure hope I can continue. Some recommend a much higher dose of 5-7 grams which I tried for a few days but made me feel so weak and shaky I thought I might collapse, so I recommend starting at 500mg. I feel an improvement after an hour or so, but after a few weeks of taking it the effect seems more steady with less noticeable fluctuations. I’ve also starting taking something called uridine which is thought to restore dopamine receptors but can’t give much of a testimony about that just yet, though I’d suggest others look into it. I really hope everyone can find some relief and recovery from this awful syndrome.
Senta says
I am so greatful for all of these stories! I care for an elderly man who has been told that he has “parkinsonisims”. He was put on Parkinson’s meds and took them for years! A new neurologist told him that he doesn’t have Parkinson’s, and he can just stop taking the pramipexole. Within a day or 2 he was in full blown withdrawls and had shut down. He went from showering daily, making huge breakfasts and dinners for himself, to basically eating nothing and not getting out of bed. I called the Dr and expressed my displeasure at his reckless handling of the situation. He should have NEVER told us to stop the drug cold turkey! I started looking up the withdrawal symptoms from pramipexole and he was experiencing them all! I restarted the drug and he started feeling better. I slowly took him off the drug over a 2 month period. But, after a day or 2, he crashed again. We saw the Dr and I brought up DAWS and he basically yelled at me! Telling me to “forget the internet! None of that stuff is right!”. He told us that it takes about a month for the receptors to rebuild. Meanwhile, my client is suffering. After reading through everyone’s stories, I am pretty sure that he will not be okay. He literally can’t do anything for himself. These symptoms are real and it seems like Drs dont know, or dont care! This is horrible for anyone who has to go through it!
Hila says
im on bromocriptine for 4 weeks to bring down prolactin level.
DAWS is real im still fighting for 2 months now, horror dream, insomnia, anxiety, fast heartbeat, irregular heartbeat, went to ER twice feels like im dying. FKIN HELL, and still cant sleep well in night.
Anhedonia, apathy and flattened emotions. Depression and feeling dreadful 24/7. Cognitive dysfunction, poor memory and poor focus and concentration. Brain fog. Loss of libido and erectile dysfunction. Orgasms aren’t pleasurable anymore.
Sleep becomes completely unrefreshing no matter how long you sleep for. You wake up feeling like you haven’t slept all.
Experience dissociation and you feel as if life is a dream.