Dopamine Agonist Withdrawal Syndrome (DAWS)

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April 24, 2013 | 93 Comments

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  1. 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.’

    • 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!

    • 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!!!!!

      • 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

    • 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.

      • 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.

      • 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.

  2. 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.

  3. 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.

  4. 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

  5. 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.

    • 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

      • 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.

  6. 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…

  7. 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

    • 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!

  8. 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!

  9. 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.

    • 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!

  10. 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.

  11. 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.

    • 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.

  12. 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.

  13. Wow….FINALLY some people can relate to the ABSOLUTE HELL I went through after discontinuing Abilify (dopamine partial agonist).

  14. 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.

  15. 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.

  16. 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

    • 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

  17. 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…

    • 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?

        • 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

  18. 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.

  19. 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!

    • 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?

  20. 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

  21. 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!

  22. 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.

  23. 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!

    • 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.

  24. 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

  25. 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!

  26. 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.

  27. 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.

    • 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.

  28. 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.

    • Bryan

      This fascinating – can you tell me/us more about the genetics angle you raise here – as much detail as you can give

      David

  29. 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?

  30. 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.

  31. 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?

  32. 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…

  33. Ive been off of mirapex for twi weeks and im going threw hell. No doctor knows what to do. I have major depression.

  34. 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.

  35. 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

  36. 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

    • 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.

    • 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

  37. 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?

  38. 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.

  39. 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.

    • 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.

      • 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 🙂

        • 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.

  40. 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.

  41. 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…..

    • 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.

  42. 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

  43. 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.”

  44. 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.

  45. 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

    • 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?

  46. 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.

  47. I’m sorry about the mistake in my previous post. 5000 to 10,000 mg of Vitamin D3 for depression. Not 1000.

  48. 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?

  49. Renny/Bryan-

    Could you please follow up with your stories? It’s been 3 years and we would like an update. Thank you!

  50. 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.

  51. 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!

  52. 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.

  53. 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.

  54. 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.

  55. 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.

  56. 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!!!

  57. 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.

  58. 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

  59. 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!

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