This is what V wrote on filing a RxISK report.
I quit taking Prozac using a step-down method. Started in Sept. 2011 and finally off in January 2012. I experienced severe loss of balance early on, which progressed into full-blown ataxia & parasthesia. Have had extensive blood-testing & MRIs of brain & cervical spine, all negative! I have to believe this is a result of coming off Prozac, although most sites say the withdrawal side effects don’t last this long.
Quite frankly, I am terrified that I may never get well. I am very ADHD now, tired always, and uninterested in performing normal daily activities (I guess because everything too hard!). My family doctor is a good guy, but he (like many other docs) is clueless re SSRIs and the dangers of taking them. I am pretty much on my own with this. Any help, recommendaions, or hope would be so welcome!
The single commonest question to RxISK.org has been about dependence on and withdrawal from treatments, such as anticonvulsants, statins, diuretics, and others. (See Medicine Induced Stress Syndromes, Dependence and Withdrawal, Stopping Antidepressants, Clopidogrel Withdrawal and Azathioprine Withdrawal).
On completing the RxISK report, V scored 10 on the Terminator Algorithm. A score of 9 makes it highly likely this is a withdrawal syndrome. Our hope is that printing out a RxISK report will give people something to take to their doctor that will engage the doctor. There are an astonishing number of doctors still who do not recognize that antidepressants cause dependence and withdrawal, even though many people give convincing stories of how these drugs can be more difficult to stop than heroin, speed or other illegal drugs.
The companies knew dependence and withdrawal were a risk even before these drugs were marketed. Studies in healthy volunteers had shown convincing evidence of dependence and withdrawal in normal people after they had been exposed to the drugs for a little as two weeks. The main symptoms these healthy volunteers had on stopping were anxiety, and depression, along with dizziness and fatigue. The data from these studies is buried.
So the first thing to say to V is this is not in your mind – you need to hold on to this point during what may be a trying time. Second, not getting help for your doctor even if he is a good doctor is par for the course.
There are three key questions for each person having the problems V outlines. First what is it? Second how long can this go on for. Third what can be done to help.
On the what is it question, there are a few things that can happen other than simple withdrawal. The obvious condition in most cases will be enduring withdrawal. This almost by definition should stop at some point. But another option is a stress syndrome and no-one really knows how long these might go on for. Finally there are legacy effects.
As regards how long this can last for, I hear from many people for whom this problem has continued for some years. It may be that these people are the exception – I don’t hear from people when things clear up. What we all need is some estimate of how long these problems last on average. A complicating factor is that some of those with enduring problems slip seamlessly from withdrawal to a stress syndrome.
Based on my experience there appear to be a number of things that might help. These ideally need to be targeted at the condition they are most likely to help – withdrawal or stress syndrome. A graded program of physical and mental activity is helpful for withdrawal, stress syndromes and legacy effects. It’s almost impossible to know how helpful the various supplements sold as part of withdrawal management strategies are. They all sound like they should be doing the right thing but it is by no means sure they are.
As regards drugs treatments, it is important to get the taper right in the first instance – using liquids and taking it gradually. Tapering slowly does not guarantee success. Many people who taper extraordinarily slowly still have problems.
One option aside from taping is to switch to a low potency serotonin reuptake inhibitor, such as the anti-histamine chlorpheniramine, a serotonin reuptake inhibiting antihistamine that comes in liquid form.
Second, a triptan such as sumatriptan appears in some cases to relieve features such as dizziness and anxiety almost instantly but the relief is only temporary – while the drug lasts in the body. Restarting Prozac (fluoxetine) or another SSRI rarely does this, which is why the triptan effect is interesting. Getting a few hours benefit like this however may make it easier to carry on.
Another treatment is donepezil. This acts on the cholinergic system. Varenicline, the smoking cessation agent, also acts on the cholinergic system and may be helpful. It may be a mistake to think that these treatments help by acting on the brain. In the case of the triptans, they likely help by acting on blood vessels and on the middle ear rather than in the brain.
In the case of drugs like these, your doctor may object that this use is off-label. He may ask where’s the evidence? If this happens, you may need to find a doctor who is prepared to explore some of these issues with you.
Another source of help out there are all the people who have been on antidepressants who may have coincidentally been put on donepezil, varenicline, sumatriptan or other drugs and found that when they take these treatments their problem clears up. We need to hear from such people. The example of Anne-Marie in Antidepressants and Cravings for Alcohol shows what can be done.
This post with a question from V and response shows how little is actually known. RxISK would love to hear from people out there who may be able to explain just what is happening in these withdrawal and stress-states and what can be done to help. There are many programs out there offering to detoxify people. At present we have no reliable knowledge of anything that would detoxify in the sense of remove drugs that may have accumulated in bodily systems, in particular in nerve endings.
As regards supportive therapy, we are working on putting together a cognitive-behavioral approach that may be of some help. If one can be developed, this will be made available.
Finally we are interested to get other accounts of dependence on and withdrawal from antidepressants or other drugs.
In the next few weeks there will be an update covering issues such as detoxification, how your doctor is likely to react to being presented with withdrawal problems and what you can do about it.
Normally, I’d recommend an ultra slow taper, 0.5mg per week. I’d also advise that the patient drink up to 8 pints of water per day and avoid anything that, under normal circumstances, would cause them agitation, with me it was crowds, queues, phone conversations.
Family support is needed. First off the family have to understand just how difficult it can be withdrawing and not be blasé about it, this is often the case. Peace and quiet is a must, particularly if one of the adverse reactions is an intolerance to sudden loud noises.
I used to go for long walks alone. I also used to add cold into the mix, in other words, I’d wear less clothes than what I should have whilst walking in sub-zero temperatures. The biting cold would temporarily substitute the head-zaps I was experiencing from withdrawal.
On the subject of head-zaps, I used to soak a bath towel in cold water, rinse it then wrap around my head turban style, not a great look but it did help somewhat. Also running water over my wrists [where the pulse is] would help slightly.
The sensory problems were more difficult to ride. Quite often it would take a split second longer for my eyes to follow the direction of my head, this would cause untold dizziness and, as a consequence, nausea – nothing like the off-hand and underplaying of withdrawal effects mentioned on the patient information leaflet that came with Seroxat [Paxil]
Adding other meds, as Rxisk suggests, may cause other problems. 1. Withdrawal and 2. Confusion as to which drug is causing what – this may lead to a doctor prescribing yet another drug to combat the effect/s of the other/s already prescribed…and so the cycle continues. I do, however, understand that studies are needed but stress adding or substituting meds may increase suicidal reactions, which is obviously the worst of all adverse events.
It may also be difficult for the patient to prove that drug A was causing the problems and not drug B, C or D etc. This would, more than likely deter any lawyers representing them in any litigation – so, personally, I’d never add another drug into the mix but Rxisk may have evidence that this has helped some people. I’m a layperson and not a medic. I’m only going by personal experience, which is vitally important yet, at times, difficult to relay, as I explain later in this comment.
Withdrawal from Seroxat took me 19 months, that was from 40mg per day to 22mg per day. I could not get past the 22mg mark, maybe a placebo effect or maybe I just felt I had tapered enough. In the end I went cold turkey. This was a drastic measure and one that I DO NOT recommend. I went through three months of hell, all of the above I’ve mentioned became 10-fold.
One certain thing is that tapering slowly cannot be done with a single pill, one has to introduce liquid formulations, this can prove difficult, however, with the controlled release versions of antidepressants, Paxil CR and Pristiq for example. There are many folk who have claimed that their GP’s have not even heard that liquid formulations are available, in truth they were introduced by the pharmaceutical industry to target children, although they will suggest it was for elderly patients who had difficulty swallowing tablets.
In the case of GSK’s Seroxat, the current propaganda from Britain’s biggest pharmaceutical company shows us that they are suggesting there isn’t really a withdrawal problem, they base this on a pooled analysis of over 100 studies, many of which were in animals.
The rub here is that companies like GSK will use animal studies to cherry pick favourable results yet dismiss them when rat pub deaths occur, citing that the doses given were more than 8 times higher than given in humans. Having their cake and eating it springs to mind.
The withdrawal problem exists, Glaxo cannot argue that it doesn’t by citing pooled studies of rats, mice and hamsters.
Withdrawal from any SSRi is unique for each individual. The most worrisome event would be that the patient experiences a rush of emotions in one go. Sadness, anger, bouts of crying all mimic the traits of someone who may be experiencing depression. They, and in many instances their doctor’s, see this as a return of the ‘illness’… I use inverted comma’s because more often than not there never has been an illness, just a normal human emotion – friend died, work problems, marriage problems etc. If a return of the ‘illness’ is diagnosed then the original dose is reintroduced or, worst case, increased… thus increasing yet more withdrawal problems when the patient decides to taper again and/or increasing the chances of completed suicide.
It’s difficult for the man on the street to convince a doctor that what he/she is doing is actually not right. “I didn’t go through years of med school to be told what to do by Joe Bloggs”
It’s Joe Bloggs who is the rat, the mouse, the hamster – only difference being that Joe can actually communicate with those administering the medication, which in essence is, I guess, what Rxisk are trying to do here.
Seroxat Sufferers Author
A reduction of even .5mg per week may be too much for some people, Bob.
If you get withdrawal symptoms, that’s a sign you’re going too fast. Make your decreases smaller or less frequently. Withdrawal symptoms often don’t show up for a few weeks; to be safe, make decreases monthly until you can figure out what your tolerance for dosage reduction might be.
Hi this is my 3rd time this year trying to get off my meds as they have become a severe problem to my head after 17 years – 61 days off and -having them most horrendous head problems i would not say headaches -just feeling i am going out of my mind and cannot control myself — please help as i am unable to go back on any antidepressant -I just do not know what to do it is never ending
HEY BOB I have been on anti depressant for years struggled to come off because if side effects but now I’m older and have started the fight I’ve been off pristiq cold turkey fur 7 weeks now weaning off never worked for me I had side effects fur A WEEK then I was fine then two weeks later boy I got hit with lethargy couldn’t walk was in agony numb tingling shaking freezing felt like I was dying I saw a naturopath am currently take natural things I can walk but not straight and any noise is extremely loud ringing in ears sore body can’t move well feels like lifting a kilo rock. My head just hurts tingly how long will this go on can I keep pushing through or will it take me years for my nervous system to repair itself on its own
Try Chlorphenamine (Piriton) an antihisitmine, I got off Paroxetine this way by using 8mg in the morning, 4mg in the afternoon followed by 8mg in the evening.
I reduced this to 8mg in the afternoon and then reduced further to 4mg twice a day one in the morning and one in the evening 7 days later.
I have quit paroxetine cold turkey this way and all withdrawal symptoms had disappeared after 10 days.
Bare in mind, I have been on Paroxetine for many years non-stop and previously took Paroxetine before.
Sertraline withdrawal was extremely bad and was bed bound. Paroxetine is my choice of anti-depressant as I find it most effective and easiest to quit with my Chlorphenamine method. Although, weight gain was a concern. None of the other anti depressants were as effective, Sertraline was ok for a few months however, my behaviour became extremely bizarre and weight loss was a concern where as Paroxetine made me gain a lot of weight.
Suppose there is some truth behind the whole ‘Chemical imbalance’ theory. However, I believe many people DO NOT suffer this and are simply lazy and miserable with bad diets, anti-depressants are not for changing bad lifestyle habits and monday morning blues, they are for a ‘the chemical inbalance’. I believe only a small number of people actually have this issue however doctors are over prescribing anti-depressants and many don’t actually need them, this is why some people experience really bad side effects. This is also encouraged by ignorance of doctors and marketing strategies of pharmaceutical companies.
Before taking anti-depressants, you should consider excercising more, try and engage more with friends and family and make changes to your diet as well as limiting tobacco and quit alcohol and recreational drugs.
If you still feel bad and your blood tests for things like Anemia and other deficiencies come back negative, then that’s when its worth considering Anti-Depressants.
Prior to taking Seroxat i had symptoms of tiredness and nausea, my GP diagnosed me with anxiety and prescribed an anti psychotic drug , within 3 days i couldnt eat or sleep due to severe agitation i was vomiting, pacing the floors and crying uncontrollably, my GP diagnosed this as an anxious state and started me on seroxat. During this time it was discovered that i was badly anaemic and needed a hysterectomy due to severe blood loss which was more than likely the cause of the original tiredness and nausea even though i had informed my GP of heavy bleeding ect it seemed easier to him to give my symptoms a label of anxiety and start me on a roller coaster of dangerous psychiatric drugs .
I remained on seroxat for 6 years as every follow up i was just given more prescriptions. I decided to take myself off the drugs during my 6 years use with disastrous consequences i became obsessed with trying to hang myself and i couldn’t function due to muliple horrendous symptoms both mental and physical, needless to say i admitted myself to hospital as i had no idea what was happening to me and felt better after seroxat was reinstated.
I then decided to wean off again with instructions from my GP to taper for 9 months using alternate days, i was taking a 20mg tab every 5 days when i decided i already felt that bad i would stop, that was September 2004.
I am now 8 years drug free and still living with damage incurred from taking seroxat, the first 3 years of quitting were hell symptoms included anxiety, panic attacks, paranoia, agoraphobia, hives, itching, tingling, agitation, aggression, suicidal thoughts, homicidal thoughts, weak muscles, vision coordination issues, cognitive problems, dizziness, nausea, headaches, mainc behaviour, racing thoughts, gastric upset,balance problems , burning sensations, heartbeat irregularities, palpatations, night sweats, insomnia and totalt feelings of despair.
8 years later to date i still have all these symptoms randomly they come and they go and although not as intense as the first years it still gets pretty scary at times.
Is this anything like prior to taking the drugs?….NO….i felt tired and nauseous, was it worth taking this drug?…NO….the side effects of insomnia ,muscle pain, blurred vision,weight gain and feeling null and void of everything was worth nothing zero zilch. Will i ever recover? who knows….GP s offer no validation or support ……will anyone be accountable for the damage i have?……NO…..everything is denied.
Im very sorry you had to go through that and also angry that the stupid doctors and big pharma did this. I am truely very sorry. I am hoping one day many people may come together and sue the shit out of these companies. Truely. We have to do this for the sake of all those that suffered and died because of these companies and doctors. I will make it happen.
Sorry to read about your awful struggles. I am 4 months clear of cilalopram and Wellbutrin – I took them together for over 4 years. I tapered off for nearly a year. Now, the worst things about my withdrawal are rapid sweats and chills and insomnia. I’ve not slept well since I stopped. I’m sweating and then cold all the time but worse at night, covers on covers off constantly. It’s really debilitating, horrible and I’m really tired all the time now.
My periods stopped as soon as I came off the medication too. I’ve been thinking that I’ve gone straight into menopause but reading up on others experiences I’m realising it’s withdrawal symptoms – I’m experiencing sweats/chills every 5 mins or less! I also cannot tolerate any medication which interferes with my brain like sleep meds or cough meds or melatonin. They have all given me symptoms like seratonin syndrome – horrible muscle tremors all over, confusion, panic, depressed respiration lasting days. Really scary, never had anything like it before. I’m now terrified to take anything but aspirin.
I’m so angry that there aren’t proper independent clinical trials with definite and solid conclusive answers to this.
How long are we to suffer? After suffering in the first place, we now face possibly years or a lifetime of unclassified and random withdrawal symptoms.
Agree with the above two comments, and Bobby has pretty much said every singe thing that I would say so I won’t repeat.
The biggest thing that struck me with V is that she come off Prozac in just 4 short months. I’m in my 5th year of tapering, yes this seems extreme but I believe for many people it is the only way to do it, I think doctors and people generally seriously underestimate or just plain don’t know the discipline it can take to get yourself off these drugs. There is no cold turkey and tough it out quick fix, well there definately wasn’t for me. I think there needs to be far more education around these drugs, they should be only prescribed very judiciously and with lots of thought and in an ideal world medical people should be well trained in how to taper people off them.
I hope your 5 yr plan isn’t a timescale needed for all people withdrawing from SSRIs. After a cold turkey attempt at withdrawal from fluoxetine (I’d been taking 20mg a day for 8 yrs) that resulted in a serious depression that started 5 months later, I went back on the drug.
After about 8 months back on the drug and feeling fine (in fact feeling fine within just a week of taking it again) I went in for a very slow tapering that lasted a year. Even though I went about coming off the SSRI this slowly, a few weeks after every reduction I would experience extreme irritability and intolerance of others. Another problem was waking up suddenly at about 4am with really nasty and memorable nightmares. I experienced neck stiffness, cramps in my calves and thighs, restless leg syndrome, brain zaps, and as I got closer to a zero dose extreme empathy that had me crying a lot. A few months after stopping altogether I was plagued by excruciatingly self critical and unforgiving thoughts and a feeling of emptiness, pointlessness and failure. I also began feeling anxious in social situations.
I am persevering. My aim in coming off is to get my real feelings back and my pre SSRI creativity. I have been completely free of the drug for 5 months now and the self criticism continues, allayed slightly by CBT exercises. I take a heap of supplements out of absolute terror of falling into a severe depression again. I take 5htp, phenylananine, omega 3, vit D3, B vits, magnesium, chromium pincolate, zinc, and vit c. In the last few days I’ve added a turmeric supplement to the mix. I don’t know if these supplements work for me. They are at very least a confidence prop.
I take a walk every day and eat a carefully balanced diet, a third of this diet is protein. I still see myself as convalescent.
About a month after coming off fluoxetine altogether I had an intense creative surge and was delighted and hoped this was real recovery. However this disappeared as fast as it came and since then my creativity has not re-emerged.
Because the severe depression I experienced, following the initial cold turkey attempt, didn’t occur until 5 months after stopping, I still do not feel confident that I am recovered. I half expect depression to return now or sometime soon. This is an ongoing anxiety of itself.
I am no longer extremely irritable and the waking up from nightmares, the brain zaps, crying and extreme empathy have stopped. The stiff neck and leg cramps are gone too. But I have days of very low mood and when these happen I seriously consider going back on the fluoxetine.
Recently I had a whole week of low mood and I was beginning to find the self critical thoughts unbearable. Then completely out of the blue I had three days where the self criticism was reduced by about 90%. This makes me feel that I am right to persevere. I’m thinking that my recovery may take quite a time. I’m really hoping that if I can complete a year of being fluoxetine free I can be over it.
I hope my story is of some use to anyone else withdrawing from SSRIs.
Yes your experience has helped me and I thank for the time you took to put it out there. I am almost 2 months clean from Prozac and Wellbutrin. It has not been fun as you know. I went so far as to using post its with all of my withdrawal symptoms written down and placing them all over my mirror in hopes that I could remove them one by one as a symptom cleared. I got so frustrate aged though that I ripped them all down. I am taking many of the supplements you mentioned and am trying to drama in hopeful. I feel great comfort in knowing I’m not alone and all this crap isn’t just in my head. Thank you.
I’ve just responded to someone and seen your post. It’s exactly one year ago. I am 4 months clear of taking citalopram and Wellbutrin – very similar to you. I’ve got horrible sweats and chills going on constantly also insomnia and intolerance to most medications.
I was wondering if you could let me know how you are feeling now, one year on? I’d really appreciate hearing your experience. Your drugs were so similar to mine.
Thank you xxxx
This post was extremely helpful. For one I fee that someone understands what I am going through. Please email me.
Female,46 yrs of age, from the US
I am so sorry to hear your tragic story. I am having many problems due to antidepressant withdrawal, however my story doesn’t seem quite as bad after reading yours. It is my hope that you get some of your happy life back.
With that being said, all of our stories are tragic…we have all been so wrong by pharmaceutical companies dispensing these drugs. I am both happy and sad to have found this website. I am so grateful to know I am not alone and to have an answer as to what caused my debilitating symptoms. As no doctor could or would give me the answer. But after reading that there may not be an end in site to the horrors I have been experiencing, I am terrified.
Hi there Thomas .I have been on flouxetine for over 30 yrs and tapered off them 3mths ago .This week I’ve been randomly targeted ith itch lips to start with then numbness of face and mouth and my very teeth ache .Could this be due to withdrawal of flouxetine it’s driving me out if my mind .
I took paroxetine for 8 years for panic attacks.
Prior to my taking paroxetine I lived a normal life, but I did experience panic attacks. i worked , I had 3 children , went on holiday , had a social life…………….
I stopped taking Paroxetine in 2005 and have been ill ever since.
It started with feelings of electrical zaps in my head followed by feelings of flu.Over time i was suffering from intense anxiety without any reason, and extreme dizziness & tinnitus. I tried to carry on with my life but really started to struggle as inaminate things would move and I would feel an intense feeling that i was rocking and bobbing about like I was on a boat,but I was still, this happened when I was stood up, sat down , in bed, all the time I had this feeling of movement.
I experienced intense depression, and dreadful headaches that painkillers did not help, then I developed what I now know to be akathisia an intense inner restlessness for no apparent reason. I had constant loose bowels and the feelings of anxiety were so extreme that I could not eat and my weight plummeted to 6st 6 lbs. I lost a total of 2 stones.I also developed chronic fatigue. I really felt so ill I just did not want to live anymore.
My doctor just did not know what was happening as all tests came back negative.i have suffered all this for 7 years and although things have improved i Am still a long way from well.Still have the rocking bobbing balance problem, headaches and anxiety attacks & tinnitus.I have never taken any other drugs and have been offered no help from any doctors. I saw a neurologist in 2006 and he said he suspected it was a withdrawl syndrome but offered no help.
Your story saddens me so. I am so terrified that I will never be well again. I feel so betrayed by the pharmaceutical companies. How can they continue to destroy not only the person prescribed these toxic drugs life, but the lives of the entire family of one who was sickened by AD’s. I am so sorry to hear that after all this time you still are piagued. I feel horrible for you and your loved ones, but also very frightened that I will have to live with this disability the rest of my life. I have to be honest, I was somewhat surprised to hear that any medical doctor admitted you were still having WD symptoms a year after stopping the medication. I honestly feel that Doctor did not offer any help for the simple reason he does not know how to. With a problem like this, the pharmaceutical companies nor the majority of the medical field or even acknowledge a problem exists let alone find a way to combat it.
I hope that this will not be an ongoing problem as it has been for you, however if it is, I hope I have the strength to endure as you have.
I started taking Seroxat on 15th January 1997, I visited the doctor for behavioural problems with my son , had a 15yr old daughter who was pregnant and had previously lost 2 babies of my own -due to the neglect during delivery at the local hospital. My doctor assured me there was no withdrawal or side effects from taking this wonder drug, as i had 4 children at home who were dependant on me. I took this drug for 8yrs, the only thing i gained was massive weight issues, as i had zero symptoms prior, but into my 8th yr of ingestion i developed symptoms of what i know now to be wd, intense dizzyness, feeling light headed, dizzy, feeling faint and nauseaus, and fainted several times. I notified my doctor he had me do a virtual cold turkey, which rendered me non functional, christmas 2005 i was laid up in bed, unable to cook or care for my family. 4/5 months later i revisited the doctors surgery where i was reinstated on 20mg
as opposed to the original script for 30mg, all the original wd symptoms were eased, the head pressure left overnight upon reinstatement. I stayed at that dose for 16/18mths and spent many long lonely hours researching sites to find out what was wrong with me , once i confirmed Seroxat as the culprit i had no choice but to shave and weigh my dose down, it took me 56 long months to reach zero, was it comfortable or easy?? no way on this earth, i suffered the most intense bizarre brutal symptoms imaginable.
During my slow taper i experienced severe akathsia, insomnia, racing thoughts, insane anxiety, panic attacks, relentless crying attacks, rages, impending doom thoughts, suicidal thoughts, ataxia, monophobia, agoraphobia, in fact there are many many more i no longer wish to even think about, there were days i prayed i could die!!!!!!!!!!! and often felt like i would.
I am now almost 17months free of this poison that wrecked my life for many many years, and although life is not perfect, its better than i ever imagined it would ever be again, am i symptom free?? NO, but for the most part its become more tolerable.
I went on this drug for situation life stuff, not mental problems, i never ever experienced anxiety/depression or any of the other stuff i have had no choice but to endure, in my life ever before. This drug has not only had a massive impact on my mental health, it has deprived me of my right to live a normal healthy happy life, i have missed out on so much, with my children growing up, my grandchildren.
YES these drugs have a place, for people that are severely mentally ill, and should never ever be prescribed by anyone that has little idea of how they work or infact ill informed of withdrawal side effects. Im not interested in the lies that drug companies spill and there massive $$$$ profits, and no longer have any faith or trust in doctors or medial community.
My heart goes out to all who suffer at the hands of these drugs, sort of makes a mockery of Glaxos ” help people live longer and do more” slogan.
God bless all, and hang on in there ——things do very very slowly get a little better.
Prescribed seroxat in 1996 for migraines and on them for 10.5 years. After 9 years I went into what I now know was poop out.
In October 2006 went to the Priory, outpatients, was told w/d and I could either double the amount, cold turkey or prozac. Choose prozac. After 3 days on seroxat and prozac felt worse and told to cut out the seroxat, got worse, told every side effect from prozac so came off that over about 1 week. It was about 6 weeks later that the real problems started.
I was DIZZY, NAUSEA, SWEATING, COLD, PRICKLING, RUNNY NOSE, BLURRED VISION, HEADACHE AT THE BACK OF MY HEAD AND ON TOP, NOISE IN EARS, WHOOSH AND POUNDING IN EARS LIKE HEARING HEARTBEAT, PALPATATIONS, RAPID HEARTBEAT, COULDN’T KEEP STILL, HAD TO GET OUT OF BED AT TIMES AND ALSO TURN OVER COULD NOT CONTROL THIS, MUSCLE ACHES, MY WHOLE BACK CEASED UP AND HAD TO CRAWL TO TOILET, BURPING, DIAHORREA, POPPING, ACID REFLUX, DRY LIPS, INSOMNIA, FATIGUE, NO APPETITE + WEIGHT LOSS, SHAKING INSIDE, NIGHTMARES, NO SEX DRIVE, TERRIBLE TASTE IN MOUTH, DEPERSONALIZATION, CONFUSION, WOULD FORGET WHAT I WAS SAYING IN THE MIDDLE OF A SENTENCE, SHOCKS THROUGH THE HEAD, FELT LIKE MY HEAD MOVED BUT IT DIDN’T, EXCEMA, ULCERS IN MOUTH, BOTTOM OF MY FEET BURN, EYES ITCH, INSIDE EARS ITCH, MY TEETH HAVE ACHED AND ALL OF MY MOUTH HAS THROBBED
Spent til end of May 2007 mainly in bed, put seroxat on internet and found it was seroxat withdrawal
May 2007 went to a psychiatrist told anxiety and given beta blockers, made the dizziness far worse, bed spinning. November 2007 sent to a group for relaxation and anxiety, did not help
From about Nov 2007 I started to sleep better but had nights where I could not sleep and still do, never get past 4 am.
Through my w/d have had to lay down in the afternoons to get some relief from the head pain/pressure.
Gone through so many emotions since coming off seroxat, crying, anxiety, anger, shouting, desperation, depressed about how I am now.
Never been depressed in my life, til coming off seroxat, enjoyed life and saw good in everyone and everything I did.
2009 and 2010 two operations and the meds made me so much worse and after the ops had more problems with food.
Had eye test sent to the hospital as too much pressure behind eyes had tests and found nothing wrong.
February 2011 went to a neurologist was told migraines and given fit pills, only took one made me so much worse, went back May to neurologist and told hyper sensitive allergic reaction to food and no advice on this
Still cannot take any meds and have had to have anti biotics and anti fungal meds during my w/d and these have made everything twice as bad.
Life is no fun, some days the w/d, is not as bad but other days it is really bad Have constant headache, feeling sick, aches and pains in most places, dizzy, shaky, noise in ears and a pounding in ears and pressure in head, sweating ,cant take any stress, change my diet or do more things and all of these double in intensity. Not angry or crying like in the beginning and I try hard to make the best of the life I now have.
I would describe stress syndrome as a mental state where emotions do not emerge in response to external events, but are created in the mind. For instance, anger is normally something we feel in response to external events, and we measure our instinctual response with our intellects. In SSRI withdrawal, that process is broken. Instead of reacting to an external event, the anger springs fully formed in the mind, then looks for an environmental queue to focus on. In that way, withdrawal sufferers can overreact to trivial events because the anger they feel is not in proportion to the queue. Other emotions like anxiety and fear react in a similar way.
During normal thought, irrational, even psychotic, thoughts do float to consciousness, but are easily dismissed as inappropriate. In withdrawal, the normal checks and balances stop working. Every thought that comes to mind has the same weight as if it was vetted by our intellects. Irrational and psychotic thoughts have the same validity as rational thought. I think that’s why irrational thoughts like suicide and homicide become plausible in the withdrawal mind. The imagination is still active, but the thinking part of the mind no longer has control.
The word stress syndrome may be confusing. What you describe is a very real effect of withdrawal but this is not what I mean by a stress syndrome. What I mean is something like tardive dyskinesia – body system that is shot and not going back to normal. Persistent sexual dysfunction on SSRIs is a stress syndrome in this sense.
I am open to suggestions for a better word to use than stress syndrome
So you mean this inability to think is due to strong emotions that take over the brain on withdrawal right (like anger… etc)? That makes sense cause some people do loose control even on “normal anger”
I always has been an anxious person and I have to deal with anxiety since childhood but had a normal life. I was only 15 years old when I had my first experience of derealization/Depersonalization. I was treated with success by homeopathy-acupuncture.
Many years later at the age of 30 I had a very scary derealization and was put on SSRIs (Which is not any more marketed) and the symptomes disappear after a few weeks.I could stop the “drug” without any w/d effects.
Some years ago I was put on Deroxat after the suicide of my husband and it was the beginning of the “story”…After many years I tried 3 times to quit but the effects were so tremendous that I had to stay on the drug. But my weight gain decided me to quit definitely in may 2008. I cold-turkeyed in one week and I thought that I shall be got out of trouble in a few weeks…Huge mistake!
The first weeks were hard but nothing compared with the hell which I shall have to pass through later.
First year: very bad depression with lack of self-esteem and suicidal ideas. Extreme sadness. Didn’t stop crying. Access of irrational anger. Dizziness and vertigo even during the night when laying in bed. Back pain every day and during the night.
Second and third years: huge pain in knees (Pain killers don’t work). Muscle weakness and ataxia.Problem in the left side of my body:can’t hold my left arm, can’t walk easily.
Total lack of self-esteem(I am a crap).
Loss of appetite and anorexia.
4th year: some improvements but the ataxia worsened and I had to walk with a stick.The old symptomes often came back…
5th year: I am still suffering and I have not a normal life. No help from my doctor.I am living day after day trying to keep hope in a better future.
I try to help another SSRIs victims and to stay positive but I feel angry because Paxil has already ruined 4 years of my life.
David this is clearly an important discussion and I endorse the notion of building an evidence base for effective SSRI withdrawal support. There are some things that I think need to be more carefully considered before conducting experiments on people experiencing withdrawal from SSRIs, through off-label prescribing . Clearly I am not medically trained and have only a lay person’s knowledge of pharmacology so may be incorrect in my understanding of some of the issues I raise. Please set me straight if that is the case.
In your response to V, you identify three possible outcomes from withdrawal – the eventual cessation of symptoms, the development of stress syndrome and the occurrence of legacy effects. You seek comment from those whose withdrawal has given rise to any of these three categories. I’m posting to give a voice to a fourth category of those who withdraw from these drugs – suicide victims and their families.
I understand completely the desire to trial interventions which have a biologically plausible mechanism for symptom relief and successful withdrawal. My concern is that all those you suggest (with the exception of CBT) carry a risk of suicide or other serious adverse reactions which may outweigh their benefits and which are risks that other available interventions do not carry.
I think its important to note that:
Of 2,619 reported ADRs from those using Chlorpheniramine maleate, 49 (1.87%) were for completed suicide.
Triptans are contraindicted for use with SSRIs because of the risk of serotonin syndrome.
Of 2,380 reported ADRs of people taking Donepezil, 13 people (0.55%) completed suicide.
Varenicline is the drug with the highest number of reports to the FDA for suicidal behaviour of all monitored drugs.
While I agree it would be useful to know whether substances that act on the cholinergic system are helpful in alleviating withdrawal symptoms I would suggest this could be tested in ways that do not expose patients to the risks of Donepezil or Varenicline use. I understand a number of foods and nutraceuticals may act beneficially on the cholinergic system and do not pose the suicide risks that pharmacological treatments do.
In my view, it would be useful to ask people about their diets and particularly foods that may target serotonin and acetylcholine, their use of supplements including B Vitamins, Folate and Choline and neutraceuticals targeting acetylcholine. It may be that these have no benefit at all, but that in itself would be a useful finding that will not emerge, if feedback sought includes only pharmaceuticals.
It is my view that interventions with the lowest level of risk should be trialled before higher risk ones.
Finally I just want to share that having taken both paroxetine and fluoxetine I think there is a serious risk associated with the strategy of switching from an SSRI with a short half life, to one with a longer half life that needs to be considered if implementing this treatment plan. The risk is that individuals may have significiantly different responses to different SSRIs meaning rather than managing known ADRs, a treatment provider may unleash new and potentially dangerous ADRs which have rapid onset.
In my case, paroxetine caused problematic reactions but not the intense and sudden-onset suicidality caused by Fluoxetine. Put simply, had a physician switched me from Paroxetine to Fluoxetine as a withdrawal management strategy, he or she would have found themselves moving from managing a patient exhibiting hostility, aggression, sleep disturbance and lack of concentration to a patient suddenly cutting and attempting suicide. While this could be dismissed as an idiosyncratic response not generalisable to other patients, the risk of managing adverse reactions familiar to the patient and known by the physician is lower than managing sudden onset, new ADRs which may take patients, families and physicians by surprise with tragic results.
The triptans are for when you are off the ssri and having a bad day, so there would not be a risk of serotonin syndrome
I agree, there are risks in prescribing other psychiatric drugs for withdrawal syndrome.
From what I’ve seen on SurvivingAntidepressants.org and hundred of other cases, quite often severe withdrawal includes hypersensitization of the nervous system to any neuroactive substance. People even have difficulty with familiar foods.
The hypersensitivity — a withdrawal syndrome completely unrecognized in the literature — causes paradoxical reactions to all kinds of things otherwise thought to be calming.
If medications are tried, they should be in very, very small dosages at first to establish the individual’s tolerance, then carefully titrated up to the lowest effective dosage.
Initial dosages that are too high may appear to have no benefit or an adverse effect. At any rate, they put additional stress on a nervous system that’s already in distress. Very low dosages decrease the risk of the adverse effects usually associated with “normal” dosages of the drug.
I’ve been treated with minute doses of lamotrigine for my prolonged Paxil withdrawal syndrome, which left me unable to sleep. Lamotrigine, which reduces nervous system reactivity, has very gradually enabled my system to learn to sleep again.
At most, I was taking 5.2mg per day. Being very hypersensitive, I started at .5mg. When using lamotrigine to treat drug damage (treatments are tailored to the individual), the doctor says he starts all his patients on less than 2mg a day.
Initially, lamotrigine enabled me to sleep a few hours a night; over about 2 years, this gradually lengthened to my present 5-6 hours a night. It’s been a long haul, I’m now titrating off lamotrigine at about .01mg every couple of weeks.
I think my doctor’s approach of gently guiding the nervous system back to normal rather than trying to eliminate the symptoms is going in the right direction.
stan, french, 61 years old, 12 years paxil, 1 year celexa
i have anxiety since my childhood, this anxiety was bearable until 45 years,
i had my first little panic attack at my work, not very spectacular, just a little panic, after a walk of 15 minutes
all was “well”.
when i had my appointment with my doctor, he asked me how i was, i thinked it was the moment to tell my little story,
i trusted the doctors and their big knowledge.
Without saying nothing he give me the prescription with another med and told me : you take a half one week and then an entire.
At the chemist, they gave me a new little box and i go home, and took a half, then an entire… all was ok.
I began take 20 mg deroxat (paxil).
one or two years after, i speak with myself, and decide to take only the half : 10 mg/day.
And this was until 2007 (12 years), but i noticed these 6 last years i was slowly more bad (i was in “tolerance”,
the poison was destroying me silencely).
i decided to wean as soon i was retired possiblility (57 years).
i weaned 10 mg in 1,5 month. I was very bad, and after 8 days went to the doctor who switched me on 20 mg citalopram(celexa), big mistake
because i was in withdrawal of paxil and add a new with his side-effects is not well.
At home i speak myself after my crash, i have to document about this because something is wrong.
I suffered high hell during 3 weeks and then hell…
I had now internet slow debit, i try to find something about antidepressants in France, and found nothing (only that France consumer
are “world champion ” in psychotropics), and only “benzo org uk” ashton manual,
and decided antypsychotics, anxyolytics and antidepressants work same.
So, every week, i try to diminish with a syringue my 20 mg. It took me 11 months hell.Any help from doctor.
In the same time, around me, people and doctor told me to go to a psychiatrist; the first appointment i said him i am here to wanting his help for weaning,
he say me: “antidepressants cure nothing, they only mask the problem”
The second appointment and the others he tried to prescribe me others meds, i remember him he has told me”they cure nothing”,
what a goal , i already eat since 13 years, what will give me more years? 20 years, 35 years? Where do i go so ?
this lasted 8 months once a week, he said nothing and seemed to wait i fall during my weaning hell.
It was a dangerous situation for my goals, so i decided to stop because in that state we are very much more vulnerable.
The 30 march 2009 i was at 0 ml.
I though all will go better since. Big illusion!
At 3 years and 5 months free meds today, i have many diseases and some severe neurological damages from paxil.
nocturia, bad dry mouth and eyes and nose and maybe others areas,(Gougerot-Sjögren? or withdrawal)
lying horizontal in bed has improved(was very severe) but still dizziness/vertigo/spine
spine pain, ribcage pain, shoulders but bearable
unable to stand , ataxia;
muscular rigidity sometime, very high emotional excitability, very sensitive;
ear deaf and severe right tinnitus, sinus blocked,
i am actually in a wave of akathisia and off balance, nerve starts and high anxiety with high derealization and tinnitus but still try to walk outdoor
my muscles have been severely deteriorate and my equilibrium standing is disastrous
before paxil i never had disease and was healthy, all started after tapering
i congratulate David HEALY for his work but regret he is for another crap: the electro convulsive therapy; nobody is perfect;
I just read your story and I wanted to say that my heart goes out to you. I wish I had something clever or informative to say. I too am suffering shocking after effects from Effexor.
Has anyone tried the supplement Huperzine? It is supposed to work on the cholinergic system and is marketed for memory problems and alzheimers.
A better suggestion for stress syndrome is the question?
Seroxat, does horrific things to the mind, which is hard to explain, but here goes.
Serotonin is the feel good factor which we all have. When the mind does not have serotonin then all is black; it is a hole like no other. A mental hole, a physical hole.
There is nowhere like it. It is beyond suffering.
This is why we are all crying out with pure agony.
I am trying to think of a phrase, a catch that people would understand.
Tardive dyskensia is a psychiatric term. It sort of carries weight.
Seroxat removes all that is good, pleasant, enjoyable, normal emotions. We are without something so important to our mental and physical well being. We are left bereft of something intrinsic in normal mode.
It hurts. It hurts so bad that people actually commit suicide because Seroxat has interferred with normal brain functions. The black hole, life without the ‘feel good factor.’
I wish I could think of a phrase to sum it up.
The best I can do is ‘black hole and loss’ leading to savage mental agony caused by a prescription drug. It is hell on earth and unless you have experienced it, words will never suffice to explain it.
Seroxat removes an essential part of our ‘lifeblood’, it affects our abilities to function, it causes us to be in a place where normal functioning behaviour does not exist, it causes us to cease functioning, to wriggle and squirm with mental and physical agony, that is almost impossible to endure.
We want it back. This loss, this causation of drug induced psychosis.
How do we ever get it back, the normality of everyday brain prowess.
We have been hit by a bullet of such magnitude, such diabolical messing from chemicals, that some of us may have been harmed forever.
We are all trying to get over it. To get back, to harness our strengths and get our poor little abused brains back to where they were before we were attacked by this extremely nasty little virus.
Psychopathically and psychologically abused is where we are at.
We are not stupid, we all know the problem, it is getting that little bit back that has been taken from us. This is the dilemma like no other.
Chemicals from Seroxat, have seriously abused us.
Back to the question from a man with a normal brain.
Our brains have been hijacked.
Of course, once you realise that, then just maybe, things can only get better. Half of the problem is medical abuse, the other half is getting your serotonin on an even keel.
SSRI, selective serotonin reuptake inhibitor. the words say it all. My serotonin was disrupted by selection and my reuptake inhibitors severely shot to bits.
It is loss.
It is us, without the feel good factor, serotonin.
It is, pure mental and physical agony.
SSRI – Seroxat manages to leave us bereft of anything resembling normality. We have been infected with a very nasty virus, which has caused severe disfunction.
As to whether, it is able to mend itself, is another thing altogether.
Annie – Serotonin is not a natural feelgood chemical. Many laboratory animals can have their serotonin system removed completely and function perfectly well without it. Some of the withdrawal problems that happen after stopping an SSRI may involve serotonin but many of them are likely to stem from other causes – this is why focussing on topping up serotonin naturally or whatever is unlikely to solve the problem
I hope you are well these days. Would love to hear that you are. Your ability to put into words your feelings and those of so many more of us is amazing. If they were written about a different subject, I would use the word beautiful, however there is nothing beautiful about this Paxil endured hell. I do not agree with David in any way whatsoever. He must not be experiencing what way to many of us are.
…then we have the whole metabolism factors of individuals. One person can metabolize one drug quicker than another. An 8 hour half-life of ‘drug A’ may take longer for a poor metabolizer. When this poor metabolizer takes their next dose they are not starting from scratch, they are merely adding more of the drug to the body that has not had a chance to metabolize the original dose. I’m out of my depth on the whole metabolism issue, find it difficult to understand… but I’m being taught the basics.
Maybe a section on metabolism in layperson’s terms on Rxisk.rog, David?
I totally agree with the black hole and the loss. personally i cannot find words to describe what it feels like. It is like a mental and physical attack that goes on for years, how we all endure this god only knows.
I was on antidepressants for almost 8 years, usually switching from one to the other because I would taper too fast and end up in withdrawal. Funny thing is, no one, not even me, realized this was the problem. They figured the drug wasnt working and that I needed another one.
My last drug, celexa, was taken October 2011 and was stopped in one week. I knew it was too fast but I went to a clinic with a medical doctor who used IV nutrients to help pull me off. They also used cranial electrical therapy. Did these help? Yea somewhat, but protracted withdrawal set in around month 4 and was bed ridden with depression. Started doing acupunture and orthomolecular medicine. Did those help? Yea, I can say they did. Am I out of withdrawal? Hell no.
May I ask then, why Serotonin is the ssri key word, selective serotonin reuptake inhibitors?
Obviously something major happens when serotonin/inhibitors are altered, chemically. The theory that we have a chemical imbalance linked to serotonin is still something I do not understand. Clever marketing can’t be the only answer, because all ssris have the same descriptive arguement. If serotonin is not the problem, what is it, in the make-up of these drugs that causes this chronic and overwhelming mental and physical agony. We all have all the same side-effects, listed in the leaflet, and more, and much worse than the pil leaflet spells out.
Laboratory animals may appear to function, like I appear to function, but they can’t actually tell you how they are feeling. This is largely an emotional issue and animals, to my mind, are a red herring. Any chance you could explain, what you think happens, in simple terms, why we appear to totally lose our normal functions and go somewhere completely alien and I know I am right when the feel good factor is missing; if it’s not serotonin, what is it? These pills obviously seriously affect our nervous systems and our emotions, causing a rather tortuous place to be.
Is serotonin, then, the red herring; is the term ssri, just the fraudulant conjuring trick that we all suspect and have learnt it is, due to the chronic and severely distressing symptoms clearly manifested by us all?
Annie – serotonin is partly red herring. SSRIs aren’t the only kind of antidepressant – they are less effective than opiates for severe depression, less effective than almost any other kind of antidepressant. Undoubtedly part of the problem on withdrawal – even in healthy volunteers after two weeks stems from effects on the serotonin system but some SSRIs are worse than others and this may be down to other things these drugs do – they act throughout the body on many different things. There is a vanishingly small amount of serotonin in your brain.
There are dozens of hormones that act on mood. For convenience, the pharmaceutical companies chose to study serotonin, norepinephrine, dopamine, and GABA, and a corresponding propaganda mill has grown up to popularize these hormones as the keys to all human emotion. The resulting drugs are examples of hammers looking for nails.
From a young age, I have suffered with mild social phobia. I struggled at times with this but managed to cope like many people do with a phobia. When I started a new job with a very critical employer, I found the anxiety was too much to cope with so I researched a drug called Seroxat, which was promoted in a phobic society magazine. It seemed too good to be true but I decided to try it as I had never had problems with any drugs before. After the initial phase of feeling like my head was full of cotton wool, I took them at night and found that I started to feel better. The sweating, weight gain and nightmares, I didn’t pay too much attention to as I thought my body would settle down once I had got used to the drug.
Over the next 7 years I tried to withdraw but each time I would get horrible symptoms so this made me carry on with a promise I would come off them in the future. My doctor told me that I had an imbalance of chemicals in my body and I was like a diabetic and these drugs would not cause dependence and I could come off them any time. I actually thought the withdrawal symptoms I was getting was something to do with the menopause and believed the Seroxat was calming this down.
Due to the 3 stone in weight that I had put on, I cut my 20mg dose down to 10 mg and this seemed to cure the nightmares and with excessive amounts of exercise, I gradually lost weight. I felt really good apart from a disabling need to sleep all the time. I quit cold turkey in 2006 as I believed if I ‘toughed it out’ it would be over within a couple of weeks.
I can only say that the first few months were like living in a nightmare. I was very depressed. At this time I tried, St Johns Wort but this seemed to make me more depressed. I then tried 5HTP which gave me heart arrhythmia’s. My weight continued to increase and I looked old and very tired all the time. I lost all interest in life, food, my appearance, the future and I seemed to be very irritated by noise. My social phobia came back but much, much worse than I have ever had it before. I truly believed that my body would readjust wtihin a month or two. After 6 months, in desperation, I went back to my doctor and asked to be put on another antidepressant, believing that I had come off Seroxat too quickly and needed something to stabilize myself. I took a 10 mg dose of citaopram for 4 days and this is when my mind and body seemed to go into shock. I had terrible akathesia and insomnia and I began to think I was going mad. During this time I developed depression and anxiety, IBS, dizziness, nausea, head zaps, chronic insomnia and most importantly, I became very allergic to medication and vitamins. Interestingly I was able to eat junk food quite easily but anything which was nutritious and full of vitamins were alien to my body and caused more problems. It was at this time I started having feelings of wanting to die as never in my life had I ever experienced anything so physically and mentally debilitating and I had no idea how long this would last and if it would actually get better and worst of all, nobody believed me.
During 2008 I developed a very strange symptom of having a dry mouth but lots of saliva and this made speaking quite difficult. I went for all sorts of tests but the doctors could not find a reason for this. Recently my dizziness which had gone has returned and doctors can find no valid reason for this. It seems to be brought on by any kind of stress or over exertion. I also suffer from restless leg syndrome which is also made worse by over exertion.
In 2009 I was diagnosed finally, with an over active thyroid, it was good news for me at the time as I had something substantial I could say was wrong with me. Sadly the treatment for this is medication (which gives me panic attacks) or radiation to destroy the thyroid and make it go underactive and then take medication for this. I decided not to go with the treatment believing my problems were seroxat related. After a year, my thyroid started to go down but were still within the reference range so I was not treated. After being very thin, almost anorexic looking, I put on weight and within one year I had put on 3 stone which was a surprise as I had not changed my eating habits and the doctor said it was nothing to do with my thyroid.
Taking this drug has been the worst decision I have ever made in my life and not a day goes by when I don’t wish I had never taken it. Over the past 6 years I have had continuous psychological therapy but I found the most effective (although not a cure) was CBT. I constantly live in hope that one day I will be the person I was meant to be and not one who has been damaged by a drug which should never have been prescribed.
Let’s start thinking about the three stages/expressions which David has touched on:
Withdrawal, stress syndrome, legacy.
1. Withdrawal (correct) as listed in the pil leaflet
2. Stress syndrome (correct) too vague
3. Legacy (correct) post trauma
I think it is important to know what stage we are at, to aid our recovery.
I am almost in legacy. I am going through the end of stress syndrome (spectacular physical and mental assault caused by prescription medicine) and am trying to find another few words to describe this middle stage.
So, when I finally come out of stress syndrome, after ten years, and go into legacy and work myself through that, what is the next stage?
I still wake up with a jolt at the same time every morning, that Seroxat induced manic pyschosis occurred, even after ten years, so, this obviously, does not wish to go away.
What comes after legacy?
A fourth word/expression comes to mind:
Anybody who is interested in the English language, let’s get our Roget’s Thesaurus and come up with one to four of the process:
Withdrawal, stress syndrome, legacy, end result.
And I suggest we keep well away from psychobabble and lose words such as stress and syndrome. It is these expressions that people glaze over, and the more suggestions that come, from us, the wounded, the nearer we will be to where it is we want to go.
I still haven’t got a clue what ssri means, despite reading about it for ten years, but it is one clever expression invented by people determined to get one over on us.
It all started in 1995 made redundant and was rather upset for a few weeks …so a family member bless them…took me to the doctor..where i was given paxil…i cant remember much but i took it for maybe 2 months and then quit cold turkey as never wanted to take it in the first place…i didnt understand how to quit and as a result i suffered hell for some time after that….fast forward 4 years i started getting pains in my wrists from keyboard overuse it got so bad i was fired because i couldnt use the keyboard anymore and so couldnt do my job. the specialist at that time gave me some drugs to try …they were amytryptaline venlafaxine and paxil…i took each one for about a month and then quit because they didnt seem to be helping…(i didnt know they were ad’s)…about 2 months later (2000) i got hit by a horrible wave of depression. (i can know see that was the wdl symptoms) so i went to doctor…..and guess what…i was back on paxil …several years later i tried to get off succeeded and the same thing happened (how could i be so stupid !! i now cry as i see how ignorant and foolish i was)
i was on for until jan 2010 20 mg .i went to doctor and said i want off ..all i was told was …ok just come off slowly…and it was left up to me to work that out. (i just cannot understand why in gods name the doctor just left me on this drug year after year) I didnt diarise my taper ..but can remember i alternated days of 20 mg and 10 mg..i cant remember much more but after 6 months i was on 10mg . and very unstable ..and unable to function. however i was desperate to get off and then alternated again 10mg and 5 mg. after 3 more months i was so unstable emotionally i sort counselling it was only at this point i realised i was in over my head and i started diarizing everything including daily emotions
i took 5mg for 2 weeks …during the first week i returned to my doctor who said ….my underlying depression was coming back….funny that because i was never given this for depression in the first place. i asked him about my tapering schdule he said it looked fine to him…and he wanted me to go back to a higher dose …i queried this … so he sent me to a psychiatrist. i saw the psychiatrist on the end of my 2nd week on 5 mg ..i was in such a bad place and so upset…the psychiatrist told me i could quit the paxil. so i did .( these people are just as ignorant as the doctors) (you wont believe this but i sid to the psychiatrist..have you ever had complaints about people getting off this drug? he replied…wait for it..well if people had problems with it there would be be law suits against the drug companies..)(oh boy!)The very next day i discovered paxil progress site. Suddenly i became instantly informed and everything became so clear …it wasnt me ..it was the drug!. It became instantly clear that my taper was totally wrong …but how was i to know and also if the medical profession couldnt work it out how was i supposed to. I was so angry i refused to go back on anything except vitamins. As a result i went through hell for months im now 16 months free and still suffering …i am having the odd window of normality opening up during the day for a small while. during the time of tapering the mornings were horrific …(im embarrased to say this but while i was tapering down i would wake in the morning in a foetaal position crying and sweating profusely .as if i was a 2 year old yet i was 47 ..terrible hey) id just hold out till the end of the day as the evenings were so much better. after 16 months drug free im not doing that now. ..so thats an improvement but i still cannot walk down the hall in the morning to the shower without starting sobbing and being hit with uncontrollable anxiety. my world has become so small . the muscles in my face seem so dead even now and im convinced something is not right in my eyes. its as if they have become loose or something. im now feelinf like rip van winkle ..waking up to find 10 years has dissappeared and i didnt even know where. ive been unemployed for some time …there is no way i could of worked and survived this ..when anxiety attacks i generally lie down and try to relax through it. every day is a fight to survive for i lack motivation enthusiasm and energy….ie life ..i feel like a dead man walking.
i have a constant worry in my mind that because i came off too fast i may have done irreparable damage….even if i went back on ..id have to ask ..then what…as a result.i decided i will just fight on in the hope things improve…i decided i will not touch another drug ..i can still hear the dr saying ..no these are not addictive…(yeah right)(you know i never smoked drank alcohol or took any kind of drug before this..and now im a recovering drug addict ..i could weep and i do!) (its as if my worst nightmare..being made a drug addictby stealth has come true…)so ill just get through each day …one day at a time. used to play competitve badminton and love opera singing in choirs …now…not an iota of interest!…well thats about it …i could go on about the other side effects which have plagued me but i wont ..imhoping those windows of normality widen a little ..and that microscopically thin emotionaal veneer somehow thickens this year. Thats my story for now this has been the most hellish horrific , thing ive ever experienced and no human should have to suffer like this.
How are you now any improvements im still realy going through it with lots off physical symptoms 18 months later i realy dont know what to do.
Dead man walking just about sums it up. Along with emotional anguish, sobbing, crying, can’t get up and do anything. I had to hold on to my aged mother’s hand just to get to the loo and back; I lay in that foetal position for months on end not knowing what was going on and all the time these gp’s are telling you to wake up and get on with it.
It is the most terrifying, most debilitating, horrific place in the world to be and to be crying like a baby at our age, 40s.50s. and these absurd gps are telling us that we are more or less round the bend is something we have to turn around, because it is not us that are mentally inadequate with our desire to hold on to ourselves, it is them, who are don’t give two hoots, who haven’t bothered to keep up the news about ssris, who have no agenda about asking the question, why?
What I have realised, and it has taken me a long time, is that the ridiculous people ‘looking after us’ have extremely small lives and anything out of the ordinary is, not investigated, not probed, not questioned, it is like having a bricklayer or plumber diagnose your ‘state of mind from prescription drugs.’
I am just aghast, that these ignorant people make us endure even more suffering than it started with, by adding to the mix, by adding benzos and betas, to make us more and more confused, and more and more dysfunctional.
I can tell you who is dysfunctional, and it ain’t us.
The most worrying thing is the age thing. I was fifty, what has age got to do with stultifying loss of all functions and sent to the land of far and far away. Nothing.
I was first prescribed antidepressants as an 11-year old in the early eighties.
I began on old generation tricyclics (they experimented with various types and dosages throughout my early teens).
As I was a child, I had no ability to question whether the doctors knew what they were doing or not. I was told ‘your brain just doesn’t make the right kinds of chemicals’.
When I was 15, I was put on the first double-blind trial of Prozac in New Zealand. When it was approved a couple of years later, I was one of the first put on it.
At the time it seemed like magic – mainly because the very nasty side effects of the tricyclics were gone. ‘Your brain doesn’t make/keep hold of enough serotonin’. It had a name now.
We now know, of course, that putting teenagers on fluoxetine can be an extremely bad idea.
I don’t like to think about my teenage years. I spent much of them in and out of inpatient psychiatric facilities, extreme self-harming, and got eighteen suicide attempts under my belt.
Would I have been that way without the Prozac, or would I have been just a depressed teenager in therapy? I can’t answer that, and it isn’t helpful at this point to dwell on it.
Around 2002, in my late twenties, Prozac seemed to stop working for me. The depression had been held at bay to a large extent, but it was returning. My dosage was upped to maximum levels, to no avail. The decision was made to switch me to Paroxetine. I started on 40mgs (I had a brief period where I tried dropping down to 30mgs (overnight of course) and crashed, with horrible insomnia, nausea, vertigo, and electricity seemingly zinging through my brain. My doctor (and I) came to the conclusion that 40mgs was my ‘do not go below’ dose, that I would simply be on at least that for the rest of my life. What I was experiencing was put down to ‘my illness recurring’, not the drop in the drug.
Actually I ended up, eventually, on 80mgs (which I discovered later was well above recommended dosage for pretty much anything). It worked for the depression, at the cost of pretty much everything else – but so insidiously and gradually I didn’t realise what was happening, and attributed it, as I always had, to ‘my illness’ rather than the drug itself. Even as an intelligent health professional, the idea that the things I was experiencing might actually be side effects rather than me never crossed my mind.
I lost interest in pretty much everything. There were no true lows, sure, but there were no highs either. I gained even more weight (I had gained about 30 pounds of ‘overweight’ on Prozac; I gained 60 more in a short time on Paroxetine). I was utterly lethargic, alternating sleeping 18 hours and still being tired with not being able to sleep at all for days. I had no energy for anything at all. I had constant diahorrea and gut upsets. I was diagnosed with high blood pressure for the first time in my life (it had always been on the low side). I didn’t feel. My memory was appalling. My creativity was dead. My sex drive was non-existent. I took weeks off work.
Ten years of this (and lots of medical tests to find out what the heck was wrong with me) then I saw an article and started thinking. What if all this was related to side effects? The more I read, the more everything fit.
I started a very slow wean from 80mgs of Paroxetine, 10% dose drops, with at least 6 weeks in between. 72mgs, 65mgs, 59mgs… slowly slowly. Very far from the ‘cut a pill in half overnight’ every second week method recommended by doctors.
That was almost 2 and a half years ago. I’m now on 18mgs, and still dropping 10% every 4-6 weeks. Next stop, 16.2mgs.
Turns out 40mgs was NOT my ‘do not go below’ dose at all – I just did it far too suddenly.
I’ve never felt better than I do now. All those horrible effects are very slowly and incrementally reversing themselves as I drop lower and lower. I have some semblance of a life back. I sleep better, but not excessively, and I don’t wake up exhausted anymore. I’ve lost 20 pounds without trying. My memory has improved noticeably. I have some joy again.
Eventually I’d like to be free of this medication. I have no idea if that’s a realistic goal, but I’m starting to think it is. At the rate I’m going, I look forward to being off psychotropic drugs for the first time in almost 30 years, in 2014.
Dr Healy how common is it for someone to suffer what appears to be permanent side effects after getting off these medications? These stories are horrific as these people have suffered for so long. In one of your papers you wrote the following
“While SSRI withdrawal may not be a problem for some people, for others it
can last months and indeed years – possibly 2-4 years. Even if it endures for
months/years, it does seem likely to clear up in the long run.”
Do you still believe this to be the case or are you finding that more folks are suffering longer than this?
My own view is that the patient information leaflets are a severely misguided and hazardous piece of literature accompanying these drugs.
No-one knows the long-term effects of suddenly stopping/starting these drugs leading to catastrophic shock/trauma.
Ten years on from abrupt cessation has left me with chronic fatigue, chronic tinnitus, the occasional brain zap, a fluttering panicky feeling which is tricky to resolve, high blood presssure and psychological trauma, made worse by having had to deal with all this alone and not having had these symptoms prior to the introduction/cessation of Seroxat.
I would be interested to hear of others experiences of long term effects, having stopped these drugs and never taken any again? I am sure I am not alone with my ten year legacy of no drugs, but living with the consequences.
The likes of GSK, or anyone else, has no knowledge of the long-term damage as this has never happened before. It is important to warn newcomers when they start their journey on an ssri and off an ssri. My advice would be not to bother, too rxisky.
This is medical unknown territory which only us can resolve by, discussing it at length, because it us, and future ssri victims, this is all about.
Dr. Healy, is this where you want people to submit withdrawal histories or is there another place where you’re collecting them? I’m concerned the histories themselves will get lost in the commentary.
PS I like the new verification widget, it’s like a brain exercise game. Always looking for ways to sprout new neurons.
The hope was that this venue would do a number of things – help us establish what is helpful. Your points about lamotrigine but also not using any other medications if possible and in particular about tapering extraordinarily slowly are just what’s needed.
I think its important to have a few other stories here to illustrate to the many others still out there wondering what’s gone wrong that in fact psychotropic withdrawal problems can be severe and extraordinarily long lived.
I believe the severity-prolongation vs incidence is probably a bell curve skewed somewhat towards shorter duration of withdrawal syndrome, which is why medicine assumes (based on anecdotal evidence per Haddad) it is usually mild and short-lived.
However, the median is not known.
On the short end tail are those who can quit cold-turkey and not feel it. On the long end are the minority who cannot quit no matter how slowly tapered.
I also believe that many of the hundreds of thousands of complaints all over the Web of withdrawal syndrome lasting more than a few months are unnecessary and represent people who tapered too fast on the advice of a physician.
If slow tapering were the rule, there would be fewer cases of prolonged withdrawal syndrome.
The NHS admits in its benzo withdrawal advice http://www.cks.nhs.uk/benzodiazepine_and_z_drug_withdrawal/management/scenario_benzodiazepine_and_z_drug_withdrawal/withdrawing_a_benzodiazepine_or_z_drug that “drug withdrawal may take 3 months to a year or longer if necessary.”
This advice needs to be generalized to all psychiatric drugs.
I am a 42 year old man who works full-time in education. I took Seroxat for 9 years after being put on it for depression in late 1999. I tapered in 2008 (I now believe it was way too fast) and I’m nearly four years free of the medication.
I did stop for a while in 2005 and it was horrific, but I have managed it this time. It’s been an incredibly hard road though and I still feel convinced that I’m in a period of recovery from the damage these drugs have done.
When I took the tablets, I started sweating really badly and my digestive system seemed to be really different. There were numerous other symptoms too – changes in sexual functioning etc. I stopped taking them in 2008, partly because my life was going reasonably well and because I hated the way the tablets had changed me and my body.
Since stopping, I had anxiety on a level I’ve never experienced before. I’ve also had huge problems with sweating, developed tinnitus and had premature ejaculation. I also have issues with dizziness, particularly in the early stages of withdrawal.
On a positive note though, I do think I’m slowly recovering still, albeit at microscopically slow speed. I’ve noticed that the almost constant constipation I suffered, even well into withdrawal seems to have gone and I haven’t had the weird IBS type symptoms I used to get either. I’m very circumspect about this, but I also think that my tinnitus is less intense and less of an issue. I still go into this weird “panic mode” and sweat terribly, but I do wonder whether that abates quicker than it used to.
Finally, I get this weird popping sensation in my head from time to time. I know it sounds crazy but I like it – it somehow feels like it’s my brain “righting itself”.
Today, I live with considerable anxiety and the aforementioned problems, but I still work in a challenging environment and have a reasonably fulfilling and active life. I believe SSRIs are extremely dangerous and have moments when my regret at taking them is all-consuming. I get by though and I do think further progress is possible.
Best wishes to all who are struggling with this. I’d like to hug each and every one of you.
Thank you for your work on this Professor Healy. I live in Cardiff and if you are still based
in this area, I would be happy to share my experiences with you in person.
Thank you for reading.
stan, french, 61 years old, 12 years paxil, 1 year celexa
Protracted Withdrawal Syndrome or SSRI Discontinuation Syndrome
after numerous testimonies i have read, a slow taper is better than a fast, but is absolutely not a guarantee to not have a Protracted Withdrawal Syndrome or SSRI Discontinuation Syndrome;
when someone stops, it is the amount of changes in body which decides the severity of withdrawal, and more years we were on the drug, more we have changes;
Hi, I am a 23 year old female in South Africa. I was put on Citalopram 20mg in December 2007 for fatigue. I had a bit of depression and some anxiety, but nothing major or anything, didnt bother me. I was happy and fine. I started to notice a flat effect on my emotions and very low sex drive, I also still had the fatigue, which was acctually much worse. In October 2010 I went to a new doctor and she recommended I switch to Paxil 20mg. I didnt have any effects when i switched over or started these drugs. In April 2012 I decided I want to get off, so with my doctors supervision I did a stupid 2 month taper. I halved the 20mg for a few weeks, then skipped a day for a week, then two days the next week and so forth. End of May 2012 I was down to 0mg. I had the normal withdrawal symptoms like hot and cold chills, fever, bad shakes, dizziness, but nothing severe. I lived ok for 2 months, just had slight dizziness. Then it really hit me. Brain fog, disocciation, severe dizziness, blured vision, anxiety, stomach bug, fatigue (more like lethargy), crying spells, shakes. My anxiety was through the roof! I was so ill I could not get out of bed. The doctor said I should try Prozac 20mg because of its longer half life. After 4 days It was so horrible, it brought my anxiety up to intollarable measures, i felt so drugged up couldnt even talk, my pupils were dilated so bad. The next day I called my psychiatrist (Who does not believe in withdrawal) And said my ‘condition’ was back and I had to be on medication. He gave me 30mg of Cymbalta and said I should up it to 60mg in 10 days. On the second day of Cymbalta I thought I was going to die!!! I couldnt even move, I was so sedated, I had head zaps, felt like there was no blood flow to my brain. Brain fog hit me severely x 10 and the disocciation was severe, felt like i was leaving my body at times. The psychiatrist couldnt understand, so he put me back on paxil, but 5mg to start. I took it for 19 days and quit. It did nothing but severely sedate me, make me more numb and suppressed and I felt sick after taking it. Confusion kicked in after my first 5mg reinstatement. 5 days after I stopped paxil, i stopped my birth control pills. I was an emotional wreck. I went back on birth control and feel a bit better. Now, 1 month paxil free, i have the following symptoms: Brain fog, confusion, memory problems, I feel drugged up but im not taking anything, disocciation (Dream-like state), Severe dizziness, i have this funny wobble/shake 24/7, blury vision, sore tired eyes, sinus that never lifts, head pressure, tinitus, emotional numbness, heart palptitations. I am scared, really, I am. I have read so many stories of people suffering with these symptomps for years and years on end. I dont know what to do. I dont drink, dont smoke, dont take drugs, i eat healthy, i dont take any supplements or vitamins. I am scared that my symptoms wont go away. I truly am so terrified that I am stuck like this forever or for many many years. I dont know what to do. Advice would be so much appreciated. I am so sick of this 🙁
There are a number of threads through all the comments on this post which we will try to summarize in the near future. This comment from Belacqua raises another new issue – some takers of antidepressants appear to have an almost allergic response to them. This is rather like the response to fluoroquinolones outlined in The Myth of the Magic Bullet. Based on the fluoroquinolone clinical picture, it appears that these problems do improve but may take time. The key question is what gives rise to this kind of response. As Allostrata points out something like this can happen to some extent in a number of people going through withdrawal – multiple sensitivities.
Hi David: Don’t know if you have heard of point of Return but they are based out of the States and I have been taking there product now for a month. It is called Gludithion and is in powder form, also take a fish oil and relaxing pill and at night I take there tart cherrie pill for sleep. I still have some problems with sleep especially over the holidays but these products are helping me. I will admit I have good days and bad days and I have been off my antidepressant for 1 year. I was on Celexa 1/2 a pill witch I weaned down 2 years befor from 1 pill. I did go cold turkey and definitely had a lot of withdrawl. I am in the protracted withdrawl now. I go through feelings of Isolation and my gut is definitely sensative. I am generally weary from time to time and go through some desperate feelings. Am not sure but they could be what they call the windows and waves. I lost 60 lbs 4 years ago by doing the Bernstein diet because I could not stand the weight anymore. 22 years on antidepressants was not a good Idia and I really understand what everyone is talking about because the withdraws are horrific. I am 57 now and never felt well on the meds. Have tried to look into alternatives for help. Hope this helps anyone out there.
I took paxil 10mg from 2003 till July 2011. When I started paxil, I noticed that my thighs were tight but this did not last more than 2 weeks and it was smooth sailing after that. In 2006 my Dr added Wellbutrin 150XL to assist my paxil due to lack of motivation.
In July 2011, I thought I was OK and tapered off paxil during six weeks and experienced back pain and minor tremors. I decided it was not worth it and decided to reinstate.
I reinstated to 10mg and was hit with neck pain, back pain, cramps in hasmtrings and overall leg pain. The symptoms kind of improved but my doctor decided to switch me to Zoloft and stop the wellbutrin.
The back/neck/leg pain would not go away and after a month of diarreah and lack of sleep and anxiety, I decided to go back . The back pain eventually subsided and so did the neck pain. But the leg pain and cramps remained. In Dec 2011, I saw a neurologist and had an MRI and EMG/NCV all clear. I tried 20mg for a week and I started having cramps in my leg once again and “electrical current” in my knees. Then in March 2012 and decided to taper off.
Once I started tapering I was hit with quadricep weakness, knee pain, iliotibial band tightness, minor anxiety and some minor depression. I completed my taper in May 2012 and leg weakness remained. I had another MRI and EMG/NCV and this time the EMG/NCV came back showing a mild neuropathy. (diffuse). After I dropped paxil I experienced some sort of buzzing in my legs, vibrations and some painful twiching.
I tried Lyrica 150mg per day, no good. Now I am taking Elavil 10mg for pain but after 10 days, I am not sure it is helping me and will probably drop it. Started physical therapy and it has help somewhat but it can be painful at times. Mental symptoms are minor, very mild depression and anxiety.
My doctors do not thing it is paxil, but this is too much of a coincidence.
I was at about 8-9 years on seroxat when I started to get multiple drug problems, it was after coming off seroxat that I got the problems with food and supplements. The drug problems also got worse after being off seroxat and I know that Diane is the same.
Following manifestations of anxiety / burn-out related to my work for which I had no proper training to be able to carry out: deterioration of sleep, fatigue, stress-related functional bowel disorder. I felt not at all depressed (no sadness at all, I kept intesret for my hobbies…)
The Doctor I was first prescribed “stresam” telling me that there was no risk of addiction.
Then anxiolytics and antidepressants to treat my anxiety: I said we became addicted to tranquillizers and antidepressants take 3-4 weeks to take over antidepressant drugs which, themselves, would not cause any addiction.
For a little over a month I was prescribed following: Seroplex 10 mg + 0.25 mg alprazolam, then LP + effexor alprazolam 0.25 mg 37.5 mg and 12.5mg Stablon + X3 + alprazolam 0.25 mg zopiclone 7.5 mg, then norset 10 mg x2 +
alprazolam 0.25 mg + 7.5 mg zopiclone, and then again Seroplex 10 x 1, 0.25 mg alprazolam 5 + x 4 + 2 mg noctamide.
At home, initial phase of treatment at first I felt a marked drowsiness then after about a week of my worsening anxiety, agitation, a clear worsening of my insomnia (2 h00 per night max), and the disappearance of my appetite.
I became more and more agitated, anxious and insomniac and I had no appetite at all (I lost 5 kg in a month)
As my condition worsened treatment I was hospitalized for depression made melancholy and I manage to, against my will, different treatments: effexor 225 mg, noctamide 2mg, xanax 0.50 x 4, then after a suicide attempt hospital (the treatment was torture, I could not sit still or sleep) effexor 225 mg, 2mg + noctamide théralène Xeroquel + 50 drops (maximum dose) + Tercian and then was replaced by the Tercian lyxansia 10mg x2 then had to stop the xeroquel after a month, stop Tercian because it led me to intestinal obstruction.
I finally emerged from the hospital with effexor 150 mg, 10 mg lyxansia x2, noctamide 2 mg and 50 drops of théralène.
When I get of psychiatric hospital (a week later) I was prescribed Solian, but I refused.
Then the Valdoxan to “wean” the noctamide: I refused too because the valdoxan is dangerous for liver function ( I wanted to decrease my noctamide but my psychiatrist wanted to switch with valdoxan)
I decided to wean me (decrease effexor at first). I am actually in the process of withdrawal effexor.
None of the psychiatrists I saw no one understood my request for withdrawal on the contrary, they do adds to my order to try to treat the symptoms created by the first prescription drugs! 4 doctors that I saw were agree with the validity of my approach, one of them sent me and see a new psychiatrist prescribed psychotherapy, another told me to reduce my dose of effexor 50% overnight deliver me without me no order to do so, a third told me that I had to wean my first sleeping by 1 Day 1 whole tablet, the next 1/2 tablet … but I made no order, the fourth told me he was really with me in my withdrawal and I issued an order adapted (effexor 37.5 mg dosed so as to reduce the doses and some homeopathic medicines) the problem is that it wants to reduce my dose by 25% in one coup.The first level – 25% of the initial dose went well (I did not feel any symptoms during the 2 weeks).
By cons, if I wanted to continue to decrease my dose noctamide (sleeping) 1/8 the same time reducing by 10% the effexor, I had the unpleasant symptoms (especially nocturnal awakenings, digestive disorders , fatigue)
I plan to make the next level of 10% decrease effexor without changing the dosage of my sleeping (lormétrazépam=noctamide)
I calculated that I will need another year to wean myself totally effexor. If I started this medication is because I feel it affects me as a powerful stimulant. I think it keeps me relacer and sleep properly.
I was afraid of not being able to sleep, starting with the withdrawal of the sleeping and anxiolytics (lysanxia) continuing to take 150 mg of effexor.
But I feel trapped because I can not wean two molecules at the same time, I still have to take benzodiazepines before starting to wean myself: this decision after 18 months at relatively high doses (20 mg lysanxia + 1 mg noctamide)
I hope to wean the effexor fairly quickly even try decreases slightly higher (- 15% or – 20%) so as to save time. Provided that my nervous system can bear!
I am very worried about this weaning (taper)! I feel drugged and prisoner of these drugs that make me evil if I continueet that could go wrong if I decreases too fast … I am very angry against the doctors who prescribed them to me saying that I would take over antidepressants anxiolytics: this is not the case! And they assured me that antidepressants do not cause addiction! I feel betrayed and poisoned against my will with dangerous!
I hope with all my strength to get out of this hell medicines without much sequelae.
I hope people will come to understand the truth about these treatments.
I hope that will change the world psychiatric methods in the coming years because the current system really scares me.
Thank you for reading my testimony.
I read the stories and I am horrified about what I see. I have been on Effexor XR 150MG since 2007. I have just weaned myself off slowly, but I am in the middle of this withdrawal nighmare from hell and I am scared to death.
First I was provided this drug because I was told that I was in para-menoupause. I was having extreme PMS/PMDD and my Gnyo ordered Effexor.. While yes it did work, I do believe that it numbed me to much through the years.
Why did I stop… My Gyno will no longer prescribe the RX. If I want to stay on it, then I need to see a Psychiatrist. Well no time like the present to stop taking drugs that I don’t know if I necessarily need anymore… So the weaning started. However the DR, wanted me to stop the 150mg all together.. I tried that YEA… NOT TO BRIGHT!!!!!!!!! I called up and said this is NOT WORKING WELL. The dizzy, the headspins, the vertigo, the nausea, the vomitting… was not what I wanted to go through…. I asked why can’t you write 2 perscriptions, one for 75mg and the second for 37.5.. I will wean myself, as this is how I did start the drug. OK… So I have been off the 37.5 for almost 3 weeks and I AM IN HEll!!!!!!!!!!!!!!!!!!!!!
I cry non-stop, I yell at everyone every day in my home. I feel like a monster… I picked a fight with my older daughter and we haven’t spoke since… I know now that I am completely out of control in my mind…My younger son asked me the other day why I was so ANGRY???
I am upset that a GYNO perscribed for me 5 years ago and HAD NO CLUE what she was getting me into… NOW after reading these posts and figuring that I am in way over my head for this withdrawl crap.. I have decided, at the request of my husband to seek Psychiatric advise (I am not happy about that – but I should at least let a DR know what is going on.. My GYNO tells me she can’t help) and also this havoc I am spewing all over my self and family can’t continue.
I have started having bad dreams and not really suicidal thoughts but angry I want to punch someone something BAD, I dream about taking my kitchen knives and pounding holes all over the walls. I go out side and sit on my porch and have to talk myself out of kicking my heel thru the spindles on the porch.. Because I am agitated, angry and out of control…
SO I went and bought a punching bag w/ stand & gloves today… I decided that the rage has to go somewhere… It did make me feel better… Pounding away on something that I could not hurt or regret touching 🙂
Why does this medicine make you feel this way?????
This is pure insanity and I feel like I am the RING Master….
I will absolutely refuse anymore Effexor or SSRI related medicine, but yet I don’t even know what I should take or not… I really don’t want anything to do with any other PILL again… I feel like after reading all of the testimonies that the DR’s have NO F’N CLUE to what hell they are putting their patients thru as long as they numb them for awhile.. But WHAT ABOUT NOW????
Hi Bob i recently stopped Seroxat this March after being on it 13.5 years.The last year i had been only taking 10mg and started getting panic attacks again went back to Doctors and he told me to stop Seroxat for two days and then go on to Sertraline i agreed not knowing any better felt terrible after sticking the sertraline for 22 days.I went back to him and he told me to go back on Seroxat to which i declined and went cold turkey i have been off seroxat for 7 months now and it has been the hardest thing i have ever done and have reconsiderd going back on seroxat to get some temporary relief. Seven months nearly eight is a long time though so do you think i should stick it out or go back on and taper?
I had all the usual stuff the first few months zaps,chronic insomnia,suicidal thoughts,anxiety basicaly felt terrible is an understatement. Now i am left with the worst anxiety since stopping and basicaly every day is a struggle working etc the anxiety i am now sufferng feels a hundred times worst than my original anxiety and im literaly praying i feel better eventualy.I know this could take a long time but do you think this could still be withdrawal seven months down the line? the only thing i take now is 25mg of amitriptyline to help me sleep at night because since i stopped seroxat my sleep is terrible which i never had before taking seroxat.I also have experienced suicidal thoughts coming off which im sure i wouldnt act on but never had these before seroxat or while on it i think its just the sheer terror of never feeling bettter again.
Basicaly i was lied to like many others told it wasnt addictive etc i went on it at 20 for bad panic/anxiety and my doctors told me all these years just to keep taking it because its fine.I saw the programmes on panorama about it causing suicidal effects, addiction etc but because i felt okay on seroxat i thought i must be one of the ones that it agrees with.I have only realised since stopping seroxat how hard it is and experienced feelings worst than ever before.If i knew what i do now when i was given seroxat i wouldnt have touched it with a barge pole.Even though it worked for me while on it helping me function etc the withdrawal is disgusting and if i knew this before i wouldnt touch it.
If you have any advice to help me it would be appreciated think the work that you and Dr David Healey are doing to show people what these drugs realy do to peoples lives is brilliant. The drug companys shouldnt be able to get away with it and there should be clinics ,help for people in the uk getting off these drugs.
Quite a journey you are having to endure.
Firstly, I’m no expert. As individuals tapering it is ‘we’ who are the experts.
I’m bemused why your doctor would stop Seroxat for two days and put you on Zoloft [Lustral] – did you ever ask him why he did this, what was his rationale? I’d really like to know his thought process behind this, particularly the science. Furthermore, why, after 22 days off Seroxat, he told you to go back on it?
7 months off Seroxat and you feel that you need it again for temporary relief because you are suffering anxiety. Could you define anxiety Karl.
David will know more about the 25mg of amitriptyline you are taking and whether or not this could be mimicking your feeling of anxiousness.
I’ve heard many stories about broken sleep after coming off Seroxat, also stories of the desire to sleep, an overwhelming urge to fall into slumber, no matter where you are. Do you often wake and find that you can never return to sleep?
Seroxat, like any other SSRi does not cure anything. The only reason you feel you need to go back onto it is down to what it has left you with – increased agitation, insomnia etc.
Would taking it again make any of the above more easier for you?
Question is Karl, do you want to fight withdrawal by late withdrawal? If you decide to take Seroxat again for relief then the likelihood is that your next venture into tapering off it will be much harder than your last.
If you quit smoking or alcohol would you light a cigarette or pour yourself a glass of Vodka after being off them both for 7 months?
If smoking and drinking relieved your anxiety then you probably would, right?
Thing is Karl, we all know that jumping back on the wagon makes it more difficult to get off second time around. The same could be said for taking Seroxat again.
These drugs don’t work by making the person feel better, they just make the person not care about their own situation… or anyone else’s for that matter.
Hope this helps Karl.
Glaxo (now) opens door to Data on Research.
“There is a deficit of trust” say some, after Glaxo bails itself out to the tune of $3 billion and ‘now’ wishes to be transparent.
“I don’t get to pick the grand jury for my own legal case”, says one boring old man to one boring old woman.
Transparency now, is too late; we want transparency from the drugs of the 80/90s, where, their mass introduction of their drugs to a gullible market, by gullible prescribers put a bullet to the heads of many and caused life-long drug-induced brain damage to others.
Hi Bob thanks for your reply basicaly the doctor was a new doctor at a new surgery i joined when i moved house and he was basicaly trying to get me to go onto sertraline by stopping the seroxat for two days lol and going straight on it. He said it was because he dosent prescribe seroxat anymore because of the trouble people have coming off it once there well, but i was already on it when i joined the surgery when i moved to the area.
And basicaly before you say it lol his idea of just stopping it dead for a couple of days after 13 years use and going straight on sertraline is rediculous i know. When i questioned him about this he said because i had only been taking 10mg for the last year i could just swap to sertraline after two days gap.
Well my original condition bob was anxiety and panic 13 years ago and i fell for the line these tablet arent addictive i was only 20 and at the time desperate and trusted my doctor.
I tried to fight anxiety and panic from the age off 17 and eventualy gave in at 20 and was given Seroxat. I basicaly couldnt function from panic attacks etc and was losing job after job and ended up being given Seroxat.It worked for me all the time i was on it and know now that all it has realy done is help me get through by masking my condition rather than treat it.
Thing is dont want to go back on it but when you ask for help all they want to do is offer you tablets which i know now arent the answer and dangerous. I never had a suicidal thought in my life or while on seroxat but when i came off i experienced this and was disgusted because i knew it was coming of the drug and never thought i would ever have a thought like that and couldnt never understand people that did. For the benifit i recieved from the drug it wasnt worth it for how i feel now with all my original anxiety problems now feeling 100 times worse which im sure is due to withdrawal?
The amitriptyline i started 2 months ago is a small dose off 25mg i have taken to help sleep but i will be stopping this in the next coming months.It does nothing for my anxiety just helps me sleep maybe Dr David Healy could tell me if its safe to take or not???
The doctor said its les addictive than sleeping tablets which i refused.
By the way thanks for listening Bob i have read your book recently and stuff online you have wrote about seroxat im glad people like you are telling the truth if you ever want to start a protest/march to the houses of parliment/downing street etc about the dangers/truth about seroxat i would back you all the way.Cant belive people in this country havent had compensation the americans have? Think it will eventualy come out in the wash the dangers of ssris thanks again karl :0) Karlfriend@live.co.uk
Be hard to march on parliament Karl as I’m now in New Zealand 🙂
Thanks for purchasing my book and reading my blog.
Have added your email to my address book.
Dear Dr David Healey could you please read my above posts and tell me if by taking amitriptyline 25mg prescribed by my gp will it affect my withdrawal recovery from seroxat.I dont plan to take it long term have been taking it for a few months due to me not being able to sleep. Also i cold turkeyed from 10mg because i didnt know any better being misinformed by my gp so should i reinstate or persevere after 8 months off just wonder because some people say if you cold turkey you end up worse off.
Also do you belive that seroxat/or other ssris can actualy cause you brain damage like some people are saying or are the symptoms people are experiencing when quitting is down to protracted withdrawl which gets better with time?
Also do you belive there will people that will be on these drugs indefinately because i know in your protacall on withdrawing ssris you say this could happen but some people say this is impossible due to tolerance being developed i e (poopout) or can some people take them for life and possibly not poopout.
I only ask you this because i respect your knowledge and expertise over anyone or anything else i have read on the internet and it would clear up a few questions i would like to have answers for that i cant find. i would apreciate if you could help me thankyou Karl.
Karl – there is no agreed answer to any of these questions, except that amitripytline is a serotonin reuptake inhibitor also – so less point going back on Seroxat if you are on amitripytline. I think the problems are protracted withdrawal and many of them may not stem from the brain at all
Thankyou for your reply David i apreciate it, my doctor has given me 25mg of amitriptyline to take for insomnia which i only ever experienced since coming of Seroxat do you think this small amount will affect my recovery from withdrawal from seroxat? if so i will gradualy cut it out.
My main symptoms im am still experiencing since quitting Seroxat is anxiety constantly on a level i have never experienced before i am sure this is due to withdrawal thankyou for your time i appreciate it Karl.
Karl – No one has any rock solid answers on any of these things.
Dr Healy, if these problems so not stem from the brain, then where do they stem from. My problems seem to… My eyes, ears, nose, facial nerves, pain nerves, and many more things have been effected, so if not the brain…WHERE???? I would love to hear there has been some progress since 4 yrs ago when some of these comments were written.
Is anyone doing any research on why we suffer from long term discontinuation illness?
has it been done for benzo sufferers? As benzo withdrawl has been known for 30? years. Or are we just left to suffer?
Not sure what research has been done on benzos, but I am confident that David is doing research into the seroxat for us.
It is quite clear that the withdrawal advice, spelt out to patients and prescribers, in the ssri pil leaflets is quite plainly wrong.
If the advice is taken up, one every other day for two weeks, and then stop, by my gp and this goes catastrophically wrong and then my hospital devise a plan for a year-long programme of tablets and liquid, then quite clearly, a bit late, but better late than never, my hospital knows more than the manufacturers about long-term tapering.
This makes a farce of the withdrawal advice in the pil leaflet. The spin on data, spanning well over ten years, leading to wildly dangerous withdrawal advice, in the pil leaflet, is what has led us to be ‘the current research’, in the here and now, long after the horse has bolted.
I Agree Annie, back in 2005 when I stopped my Gp told me to half my dose which was 20mg, she gave me some 30mg pills so I could go to 15mg then 10mg then 5mg. I stopped at 5mg and the world just caved in!!!!
We are up the creek without a paddle and doctors just do not care. They made our bed but its is us that have to lie in it.
Just to add to any research about Seroxat and why this drug leaves people sinking in a mire of psychosis, paranoia, emotional lability, hysteria, exhaustion, anexoria, nightmares, mania, depersonalization, agitation, disorientation, confusion.
I look at a photograph of me, my mother and daughter taken in 1988 when life was real and I was heartily living in the present and was completely aware of myself and where I was and what I was doing. I can honestly say that this was the last time that life was real for me.
My mind has had to cope with two years of being subtly, silently and erroneously altered, by Seroxat, which I was unaware of at the time; it was being gently manipulated, when life was going on, but with an undercurrent of unreality. I seemed to be living in the real world, but looking back, life passed me by, as I did everything I usually did, but with a sort of detachment which made everything less of a challenge, more a peaceful delusion.
In the eight weeks off Seroxat, which would make Hannibal Lecter, look normal, my mind was shot to pieces by the gamut of all the emotive savagery, as described above.
My battered mind then had to find a way to recovery.
Notwithstanding benzos, my mind had to find it’s normal way back to where it was before it was even introduced to Seroxat.
This has taken a long, long time and because it is such a long, long time, how am I to recognise when, in fact, I am back to my ‘normal’ self. Was the long list of unendurable and traumatic, highly emotive experiences too much to bear, where I thought my mind was completely blown for ever, or am I able to recognise myself, as I was, before Seroxat entered my life?
It’s a puzzle, which I am still trying to resolve, by trying to be as erudite as possible.
I do know that trying to eradicate all thoughts of these years of horror and trauma is not the right way to go about it.
It is the words of the patient that are important.
‘The world just caved in’.
The next ‘moves’ will now be anticipated.
How about Seroxat ‘lite’, Prozac lite, Citalopram lite, etc. If I was a manufacturer of, drugs- gone-wrong, I would come back with a new version of antidepressants, halving the substance, halving the side-effects.
But, I am just a retired marketing director; wouldn’t want to put ideas into their ’empty heads’.
What I wouldn’t do, is to suppress and deny all allegations of wrongful ‘mis-conduct’, pay absurd billion dollar fines, stop in ‘my tracks’ with any further development of ‘ssris’, put a spokesman at the head of an enormous pharmaceutical company, ‘Sir Andrew Witty’, who is now the’fall-guy’, let newspapers indulge in smatterings of ‘knowledge’ of the subject and then, keep quiet.
If I was the Corporate Marketing Director of GSK, I would listen, take action, take on-board, thousands of complaints, be up for personal criticism, and be a man.
I would not countenance paying the $$$$s, if I knew I was not guilty of corporate manslaughter.
Here’s the difference between Witty and myself.
The law as it stands, with corporate manslaughter cases, does not allow any one person to be convicted. The law as it stands, in cases such as this, only allows for fines of billions.
Let’s carry on with V’s story for a little while longer.
Entering the ‘world’ of psychiatric diagnosis, and then mind altering prescriptive medicine, there is almost no way back. It takes a brave patient to say no to more drugs, after a time of undignified diagnosis and more and more drugs, from what is already a bad start with just one drug.
More and more confused the patient becomes with the seemingly endless supply of two classes of drugs, antidepressants and benzodiazepines, given out without forethought or malice, but with an under-educated approach as to how the patient is actually going to deal with their once normal mind, led a merry dance, with so many, drug-induced ‘directions’ going on, at the same time.
It is hard to keep a handle of what is normal.
The more ill and dependent the patient becomes, the more the diagnosis grows in severity until either a total breakdown occurs, or, worse, incarceration in a mental hospital, or even, much, much worse, so addled and confused, there is no way out, except not to be here any more.
Is it so very hard for prescribers not to realise the dangerous game they are playing.
A profoundly, distinctly unsettling, journey of drugs and destructive interference becomes a ‘medically recognised game’ and to escape, intact, is certainly not a game for the patient.
Patients do not play games.
Last spring, I withdrew on my own from Celexa and Xanax. I’d been on those for many years.
My turning point came after a manic episode and suicide attempt put me in the Emergency Room. This was the capstone to a decline of personality that took place over several years- marked by emotional numbness, akathisia, disinhibition, alcohol cravings, rage, restlessness. I kept most of these under my hat but when I did report the restlessness and insomnia to my pdoc, he increased my dosages. About a month or so before my incident he raised my Celexa from 20 to 30 mg. Before that he added Trazodone for sleep. Then I wigged out, and ended up with an IV drip and a mouthful of charcoal. Thank God I was released the next day to a colleague and not sent to the psych ward.
I confronted my pdoc, and he scoffed at me- literally scoffed at me. He said, “what did you do THAT for? You can’t kill yourself on Celexa.” (I had used Celexa as the suicide medium)
I asked about talk therapy, and he said, and I quote: “You are not a good candidate for talk therapy.” He was a believer in the almighty pill and that pills were all I needed. He also liked the monthly med checks which brought in lots of cash from his patients.
So I walked out, after 10 years of no improvement and then a decline. You may ask why so long? I was told- and for a long time I believed- that I had an incurable genetic illness that required lifelong medication. That is what psychiatrists are telling patients. That is what mine told me, every month and every year. No cure. You need meds. That’s it. Stop asking questions.
Alone and at home, I tapered off rapidly over a period of about 10 weeks and it was hell. I used a pill cutter and withdrew from all meds simultaneously.
Biggest symptoms were bone crushing fatigue, brain zaps, tinnitus (still have that) and aches and pains. Head felt like it was in a fog.
However, as time wore on, the akathisia, the restlessness and the anger began to melt away and people around me noticed a change for the better.
A friend noted yesterday, “hey, why don’t I get those late night crazy text messages from you any more?” And I told him what happened, and he was a bit taken aback.
What helped: Good food, exercise, fish oil, vit C and D. Go easy on B vitamins at first- they are very nerve stimulating. Introduce those later after you are over the hump.
Dr. Healy Thank you for the excellent information you have collected so far and for your interest of better,safer care. I hope you will soon have a collection of names of Doctors worldwide that are willing to recognize and treat those going off of psychiatric meds.
I just wanted to update here of my protracted withdrawal. I am now 22 months off and i have seen 0 improvements. See my post above on 10 September 2012.
I cannot believe how dangerous these drugs are and i think the time has come for it to be taken off the market. My life has been taken away because of these drugs. I might as well be dead, atleast i wont suffer this indescribable hell on earth.
Belacqua11, for me it took about 20 months to feel even the slightest improvement of my cold turkey from 10 mg Paxil/Seroxat. And even then nasty waves were still coming after that. I am now in my 7th year of recovery and things really have improved. We must keep hoping.
And I have the greatest respect for Dr. Healy although I am afraid that he does not have enough power to bring the pharmaceutical industry on its knees.
Recently I issued a complaint at the Dutch medicine regulator and I got just all the standard pharma answers back: “talk to your doctor”, “it is approved medicine so the problem will be you”, “we do not start an investigation based on a single patient’s complaint”, etc. etc.
So I am afraid it will be along long time until things will really change. But people like David Healy do fight for us and I really am grateful for that
I have taken Prozac for 20 years on and off. I could not discontinue due to increased irritability. Currently I am reducing it by 50 percent and am experiencing hives, more emotional lability and bursts of anger, neck pain and head confusion. I did not know the cause of these symptoms but now believe I must taper the drug even more slowly. I am grateful for your information!!!
Im in the exactly the same position quit seroxat 3 years ago in march and feel worse than ever my withdrawal has got worse not better dont take any presscribed pills at all. I basicaly live terrified every day by mental images that feel like constant hallucinations which I never had. Physical symptoms that are terrifying made worse somtimes by eating which I have every day. I actualy feel insane psychotic since stopping seroxat. The only thing that has improved is I sleep now okay for last year because when I first stopped I slept for two hours a night if I was lucky for 18 months never had insomnia before taking seroxat. I pray every day to feel better there is no help gps dont belive you I wish there was somwhere I could go where I could get some help or at least recognition that what I am experincing is real. Wish I never took this drug was told it was safe as a young 20 year old worry im not going to make it through this. Consider myself a militant and strong person but this is inhumane I actualy feel like I have been poisoned and never been so scared in my life feel like im on some permanent bad drug trip and the physical symptoms are horrendous. If any else knows if its normal to still fill ill this far off comments would be appreciated. Going to try and hang in there feel like im trying to climb mount everest in flip flops all I keep reminding myself is the saying where there is life there is hope.
Also I would like to add my symptoms got alot worse especialy the physical ones after being 17 months off seroxat which makes me worry because i thought you were meant to feel better the longer you quit. And these mental images I never had I am plagued with 24/7 and are bizarre and terrifying I was given these tablets for panic attacks but now hardly get them but what I have now is much more terrifying with no respite apart from when I sleep. What I am suffering with now is not what I had before taking this so called medicine I am a 100 times worse off.
Question i took paxil 15 years fir anxiety and dp i tapered 10% every 3 weeks but i have a lot of symptoms depression racing thoughts anxiety ringing ears every day 3 or 4 hours sleep ! Is this possible after a slow taper ? I took the last paxil 2 months ago and i am verry scared !
its totally possible – may take months to settle – there are a lot of people working on trying to understand this – will have answers at some point
Dr Healy I slow tapered Zoloft almost 3 months ago I was taking only 12.5 mg every other day but for several years. On April 3 of this year I took a morphine sulfate tablet for my fibromyalgia and had a severe reaction. I was not having any withdrawal symptoms from Zoloft . A couple of weeks later the symptoms came with a fury. Could the morphine triggered my withdrawal or was it just a coincidence? I am now trying to reinstate Zoloft at 0.2 ml liquid every day. How long will it take for me to reinstate at such a low dose and will my withdrawal symptoms subside soon since my withdrawal amount was only 12.5 mg of Zoloft? I realize the doctor should have tapered me much slower and at reduced amounts Are my chances good for recovery? I also take Gabapentin 600 mg and Lamictal 25 mg every day. Could they be interfering? Thanks sorry so many questions
Thank you for the reply dr Healy !!
Dr healy what do they give in the uk for add ? Would you prefer antidepressants or something like ritalin ? Can paxil masks add symptoms ? Because after i stopped paxil i have so much racing thoughts and i sleep 2 hours at nights and it scared me !
that’s not ADD
Hi if theres anything you know that could help me david I would appreciate any advice. These intrusive images I suffer with are very frightening and on a constant level have you ever heard off anyone experiencing them in seroxat withdrawal that never had them before and for this long? Also is it possible to recover fully or partly even this far out after having not made realy any progress 34 months off. Im surprised how many symptoms I got that are worse that didnt start untill I was 17 months off i worry that coming off this drug has given me schizophrenia or some kind off psychosis i havent heard any voices though its very worrying seeing bizzare things in my head 24/7 i fear going to see someone not in the know and getting polypharmed with all sorts which i know would spell disaster especialy when im even sensitive to eating certain foods. I know your a busy person but your site is the only place I can relate to other peoples struggles . If you ever find somthing that helps id give my back teeth to try it out if id have known how bad coming off seroxat was I wouldnt off bothered and tryed to take my chances on it just to starve off these symptoms. Thought off reinstating but the way my body mind feels I reckon it would make me alot worse because symptoms I have now are not what I went on this drug for thankyou for listening karl. Ps if you see people for treatment willing to travel or pay even if its just to discuss and and have this confirmed by someone that dosent tell you seroxat withdrawal lasts two weeks to a month like most gps thanks again.
We’re working on just this. Based on what we’re working on, the one tip at the moment is to exercise – building up slowly. Exercise acts as a gate-control on some of the fibres that carry the most distressing symptoms people get on withdrawal. It isn’t a cure but it might help.
Sorry i know its a difficult question but add runs in the family and when i was on paxil i think it coverd my add ! But now that i am of paxil i feel so worse that i am going to the doctor again but they dont know anything about withdrawel ! Whats better when i got add ? Ritalin or something or an ssri like paxil ? I cant stop my mind thinking what mental disease i have with extreme anxiety bad sleep brain fog ! Is it possible to have add and not taking medication ? Thank you so much for all your work and sorry for the difficult question
Thankyou david one thing I am doing is lots off physical exercise when I can gardening etc and walk alot I do this some days even if im suffering terribly. The images or visual hallucinations whatever they are there more internal in my head than seeing them externaly been told there intrusive images but I have no volitional control over them and there constant 24/7. When im busy doing things exercise etc it takes my mind off it. Funny thing when im suffering physical symptoms the mental images abate tenporarily and then come back when the physical symptoms reside. I was terrified when I first got these images off having psychosis/schizophrenia but now got use to them even though they still frighten me I just try and go with it. Physical symptoms awfull but do have respite from them lately here and there just cant belive ive been left like this after just taking these pills for panic attacks.would prefer to have panic attacks any day than this. Thankyou for replying david if you have any breakthroughs let me know going to assess how I feel in another year praying I make some progress will update how im getting on later down the line thanks again karl.
Dr healey is t possible that paxil can mask add because i have got a lott symptoms of add since i stopped paxil but on paxil i did not notice the symptoms ! Than i know its withdrawel or add ! Thanks
its more likely to be withdrawal
Dear david i am thinking what to do or start paxil again 5 mg or 10 and when i am stabelised a slow taper or take Saint johns worth ? Do you know what other people do ? I have insomnia anxiety and depression ! I did a slow taper and stopped paxil for 2,5 months now !
I have just found out about the Seroxat litigation that is in process and I phoned the solicitor and they said because I took it longer than nine years im not eligible. Is this a joke ? Surely anyone that took it before they changed the information leaflet that said you cannot become addicted to Seroxat should be entitled. If you gave me a million it wouldnt take away these symptoms but at least you would have recognition off your suffering. I honestly feel like giving up I feel literaly disabled being tortured everyday by physical and mental symptoms and to be told because I took it more than nine years they cant help me I honestly cant put into words how that makes me feel even gps dont belive you.If anyone knows how I could pursure compensation for what this drug had done to me can you comment. If this carries on for another 3 years count me in as another seroxat casualty because I cant take this much longer the hardest thing is not being believed this is hell on earth and im not being melodramatic this realy is.
Dr Healy, I’d be grateful if you could tell me whether this these symptoms suggest SSRI protracted withdrawal…
By way of background: I am 41, and was diagnosed with panic disorder in my teens. While I did have low mood at times, this was due to the impact of the panic attacks on my life. I did not have depression or GAD. I took an SSRI of some kind (Prozac, Seroxat, Celexa, Effexor and sertraline) constantly from 1996 to August 2014 – solely for panic disorder. All SSRIs gave me side effects, including terrible diarrhoea which caused my body to poorly absorb vitamin B12/folate/bile salts and as a result I became unwell. Although I did begin to show some neurological symptoms of B12 deficiency (paresthesia), these were reversed once I started injections.
In March 2013, I had been taking sertraline 100mg for 3 years, and had bad diarrhoea, weight gain regardless of my calories intake, and it was doing little for the panic attacks – so I decided to stop taking it. Having had a bad withdrawal experience in 2001 from Seroxat, I tapered very very slowly and took 17 months to get off it, finally getting to zero in August 2014.
My immediate withdrawal was pretty much as expected – brain zaps, diarrhoea, nausea, dizziness, insomnia, achy muscles/joints, headache, increased anxiety, low mood, hugely irritability/angry for no reason, intense crying. I also had strange sensations that were only eased if, for example, I swayed from side to side; and, oddly, I kept seeing something out of the corner of my eye that wasn’t there. This lasted for about 8 weeks.
Since then (i.e. from November 2014), I seem to fluctuate between 2-3 weeks of feeling relatively OK (by this I mean I have panic attacks in the situations I have always had them in, but my mood and physical health is pretty stable otherwise, apart from some intermittent IBS) followed by 2-3 weeks where I feel absolutely desperate: I cry all the time, I am absolutely furious (e.g. constantly think of past slights which make me feel so angry I retch – I’ve never retched when angry before! I have shouted at people and punched things), I feel suicidal, I am constantly anxious (i.e. not just in the situations where I usually panic, but a free-floating, non-stop anxiety – it’s like there is adrenaline surging through me), plus diarrhoea, nausea, some dizziness, waking up in the night with aching joints/thighs, being woken up every morning with palpitations (although my heart rate does not seem to be faster), I also sometimes see a black streak out of the corner of my left eye (like something small running past) but nothing is there (this has happened twice to me before – during the B12/folate deficiency and, as mentioned, during the sertraline immediate eight week withdrawal stage.)
Nothing seems to trigger the bad weeks – I just wake up one morning and feel terrible. Then around two weeks later, I wake up one morning and feel fine. Prior to taking SSRIs, as mentioned, I had panic attacks in certain situations and sometimes felt down about them, however I did not feel suicidal or angry, or cry or feel anxious all the time. I feel utterly out of control. I did have bad PMT and started the combined pill (Femodene) a few months ago in an attempt to help. I have wondered if this is causing the symptoms – however it seems odd to have a ‘2 good weeks/ 2 bad weeks’ pattern on the pill (particularly as I tend to take 2 or 3 packs back to back), and I’ve never had a problem with this pill before. I’ve also thought about reinstating the SSRI – but the side effects (and lack of much efficacy) really put me off.
During these bad weeks I take the antihistamine hydroxyzine to help with the nausea/anxiety. This takes the edge off the symptoms – although does nothing for the nightly palpitations and aching. On occasions I take a small amount of diazepam, but obviously these are only prescribed for ’emergencies’ and really I need to keep them for my panic attack situations.
I have read online about protracted SSRI withdrawal ‘waves’ and ‘windows’ and wondered if this might be what is happening? If so, how can I explain this to my doctor, who in all likelihood considers withdrawal to abate after 6-8 weeks? Are there any research studies I can show him? I have considered asking him for beta blockers as a way of coping with what feels like constant adrenaline surges – would this help?
Many thanks for your help.
We will have another post on antidepressant withdrawal in the next few weeks. Basically this does sound like AD withdrawal. What protracted withdrawal means however is very unclear – it is protracted but it may not be withdrawal. We are working on some ideas about what happens in these states
Many thanks for your reply. Can I just clarify (and I appreciate this may be what you are working on currently and have no answer as yet) – if these symptoms are protracted but possibly not withdrawal, could they be damage caused by long term usage of the meds, for example?
I live alone, am a freelancer, and right now am having problems functioning during the two weekly ‘waves’. I need to take something to allow me to work and pay my bills, as during the ‘waves’ I find it difficult to go out or even speak to people on the phone due to such heightened anxiety. How can I explain this phenomenon to my GP so he might believe me, rather than thinking I am just having a resurgence of the original condition, despite the fact I only ever had panic disorder and none of the other symptoms? And would beta blockers be a short term solution, bearing in mind it seems to me that some of the symptoms are constant adrenaline / cortisol (non-stop anxiety, difficulty staying asleep due to palpitations, constantly feeling light-headed) – a very similar feeling to hypoglycemia, but eating does not relieve the symptoms – again none of which I experienced prior to taking SSRIs? I am having acupuncture, but finding it very hard to attend the sessions during the ‘waves’, as I feel so anxious I just want to pull out the needles and run! I tried 5HTP but it seems to make me nauseous (I am emetophobic). Many thanks.
There are no answers to most of these things. The RxISK site has some papers on protracted withdrawal which offer some suggestions but we are working on others. Beta blockers aren’t likely to be helpful
I have been suffering all this for 3 years in march the 15 since stopping seroxat think this could end me I was never like this. Im not scaremongering but the fact I have this for three years makes me wonder think that this is permanent damage to the brain and body unmasked with cessation rather than a protracted problem I think time will tell in my case and other peoples the world over .Im flabbergasted that doctors in the Uk belive that these problems are in ones head withdrawal dosent exist etc. I wish David that you or someone in the Uk could set somwhere up where people with long term effects bad cases could be seen and helped. I know this might be hard to do with lack off funding etc but its an idea at least people would have recognition and a diagnosis off what there suffering is a genuine and serious condition.
I totally agree. We cannot and should not be left in this awful condition. This is not withdrawal. This is brain damage. It’s a disgrace against humanity. I’ve seen four of my friends who I have met on this horrific journey lose their lives and the numbers are rising. These posts date back years and still nothing is being done. When is it going to stop?
I am in the UK Karl if you wish to get in touch
My son is still suffering 1 year on after stopping venlafaxine. His withdrawal was extremely severe and he suffered a psychotic episode. This resulted in him being arrested, charged with a serious offence and facing a prison sentence. After a year long court case he was found not guilty because we proved that it was the effects of the drug.
He still suffers from depersonalisation, visual problems and other complaints that started on the first week of coming off venlafaxine. We are now just over a year on and although he is improved he is a long way off getting back to normal.
He wasn’t even prescribed it for depression. It was prescribed off label for a neurological condition. So that’s why I know it was the drug withdrawal that sent him psychotic, it can’t be blamed on returning depression or MH problem because he didn’t have any. He sure has problems now though thanks to venlafaxine !
That drug and the lack of awareness of how powerful it is and the hidden side effects it can cause has ruined my family. It has broken him and his loved ones who have to watch it happen.
Im 3 years off and experiencing all your symptoms and more. I have given up hope of ever getting well again. I am 27 years old. I commented here a few years ago when i was 23. So many years have been taken from me and i have barely seen ANY improvement. I am suffering severely without any windows.
Anyone is welcome to visit my website http://www.iwontgiveuphope.weebly.com and het in touch via the “Contact me” tab
Dr.Healy, thanks for providing us with your knowledge. I tapered off of Paxil this year and during my reduction, developed a severe allergic reaction, hives, drop in blood pressure, an ambulance ride). No foods, or allergens have been found responsible in all the testing I’ve done since. I’ve been told I have chronic hives now. Is it possible for the chaos my central nervous system has been put through the reason for my sudden hives? (since June this year) I’ve been off of Paxil 2.5 months now and feeling OK, other than some aches and pains in my body.
Hi Sara if you see my message you can get in touch with me at firstname.lastname@example.org be nice to talk to someone who can relate
My Lexapro withdrawal, after using it for 10 years,went seriously wrong, and I ended to psychiatric hospital. It basically ruined my life and health and now I know what living dead means. I’m basically disabled now, and this condition is inhumane! I am only 29 years old! I went to hospital,because my family was so worried about me, when I was suffering, not sleeping and having panic attacks and I was really anxious and agitated, suffering from depersonalization. I watched, when my boyfriend slept and just wanted to sleep but no sleep! My condition went worse, when my doctor prescribed me a small dose of Mirtazapine to help me sleep,which I had used years ago when starting Lex,with no side effects.One pill made my panic attacks worse, increased my confusion,and feelings of what I now know was akathisia and I had tachychardia all night long, and it didn’t even help me sleep properly. And what a mistake it was to go to hospital voluntarily, when even the first doctor I talked with, said that maybe it’s the best to take a prescription of a benzo and go home when she saw how anxious I was! She was like: Do you really want to go there? Are you sure? I have thought so many times: Why did I go? Would things have gone otherwise if I haven’t gone… I ended up taking multiple drugs against my will. ( I went to hospital voluntarily). I have suffered basically many drug withdrawals during the year. SSRI withdrawal would have been enough to handle! Don’t go to hospital in withdrawal if you can avoid it, it’s too risky, better to suffer at home,without that crazy overdrugging they do in hospitals. It’s terrible to feel unwell and hopeless, knowing that there is nothing to help you, except maybe benzos that are not a good solution,you don’t want to be a benzo addict after being addicted to SSRI:s! I don’t want this happen to anyone! I feel like I am permanently ruined as a human being, because of these drugs and suffer in a way there is no words for it all the time 24/7, after months of pills, pills and pills! I am not able to study in university or work anymore, which was my life and passion even two weaks before hospital, although i was tired all the time after quitting SSRI:s( it ruined my sleep). I feel like there is nothing left of me – no emotions, no personality, only suffering.I have lost even basic human feelings: I don’t feel tired any more, hungry anymore, pleasure anymore, I ‘m not gonna even mention all the human aspects I have lost which have wiped out of my mind and body .. I just feel terrible burning(I can’t even describe it!) feeling in my head like my brain has fried, dizziness, tremor. Most of the time I am lying in sofa, before I was active and enjoyed exercising and was a gym addict, now I am fat and have poor coordination. If my boyfriend would not help me in many things, I don’t know how I would cope. I feel like I didn’t even live the life I lived, its gone,I don’t have even my nice memories anymore.. Nowadays I know I was hypersensitive to almost all meds after Lexapro, and I suffered crazy unimaginable adverse reaction one after another to meds, which suppose to “help ” me, which led to more drugs.. I tried to tell the
doctor, that I am in withdrawal,but she said it is not withdrawal, because I had quitted the drug 7-8 weeks ago so it cannot be it-drug is out of my system, it’s depression and anxiety. My worst problems started 6 weeks after quitting, although mild insomnia started almost immidiately, which suddenly led to not sleeping at all or max two hours in a night which was new and terrible experience! I had never never ever suffered from insomnia before ! Doc said that maybe I should go back to 5 mg:s of Lexapro and I accepted it. Unfortunately it made me really agitated and feeling of akathisia came back, which was pure hell. I should have reinstated right away with mini dose when I started to have very bad sleeping problems, maybe that would have saved my life. I screamed after I felt the effect of 5 mg of Lexapro again(first 2,5mgs day before I could handle), and I was so agitated and akathisia came back. I was scared, the last thing to help me which had always helped, failed and I went to my room, and just cried and was hopeless. I knew that drugs wouldn’t help me anymore,they would cause more problems-something had gone wrong. Because of my irrational behaviour, doctor decided to start against my will big therapeutic doses of Zyprexa,Depakote at the same time to my daily benzo mix of 3 oxazepams and a Temazepam. That was crazy, I had only used one pill of Lexapro before. I had said I didn’t need so many benzos, which were started at first in the hospital, which helped to calm me down and let me rest, although I couldn’t sleep well and not being able to nap. Doctor put me also to involuntary treatment, because I was behaving how I was, and she thought i have psychotic depression. I read my involuntary treatment papers later, and one reason was: “patients have delusions that modern psychiatric medication has permanently injured her” ! Yep, quite sure about it now
,thanks of the extra evidence and torture I feel every day nowadays, because of torturing my already suffering brain and CNS with more powerful drugs.. I thought this can’t be real, in movies these things happen, they seriously can’t put strong antipsychotics to my body against my will, I’m not crazy, I don’t want these poisons, it’s my body and mind! I don’t want new drugs in my system. I still have trauma and I feel hate towards these people.. Nurses injecting antipsychotics to my body against my will leaving me to confused, humiliated, oversedated state, not being able to sleep although I was barely awake. Torture! I haven’t ever felt so bad how I felt after these drugs and I was so oversedated once I felt I’m gonna fall to the floor when I was walking after taking all these meds. I was not being able to do even basic things, and I felt like I lost my ability think properly which was the scariest thing, I had experienced. I had so good imagination before. First I noticed my cognitive difficulties, when I tried to concentrate and watch a movie, which was impossible or to play a computer game – impossible, like it was so difficult. It was only the beginning. Obviously Zyprexa wasn’t right for me(Every drug wasn’t right for me in that point, only benzos helped me somehow to calm down at first), so the doc changed it after month to lower dose of Seroquel and cold turkeyed Depakote. What I did not now, that I would not feel good in any drug anymore. It was pure hell: I had paresthesia in my legs, and that bizarre burning feeling in my scalp and head, and wanted to crawl out of my skin.. Also akathisia continued..Changing drugs again was terrible, and when the doc change meds, she made me to take 5 drugs in an evening(two antipsychotics, Depakote, and my daily benzo routine). For the first time I seriously felt I was losing my mind, like my brain was falling apart.. Soon I lost my ability to sleep again more than 2 hours (no naps)although I took 3 drugs, that are sedatives and melatonin before sleep. I was like a zombie who moved slowly, and was disconnected of my emotions. It was scary to feel like I was not able to cry anymore, and being emotionally blunt..Every day I felt more weird symptoms. Doctor thought that I was psychotic, when I told about my symptoms and increased 50 percent my dose of Seroquel. Then I felt the first time, I woke up feeling like my head was empty, I couldn’t have a single thought in my mind,everything felt surreal, my muscles were stiff and I walked back and forth in panic. I walked outside that day, feeling I want to kill myself. After months of Seroquel which doctor decreased immidiately after that, I got paranoid, lived in my imaginary world,and lost my ability to think rationally. Well hello Zyprexa again, first 10 mgs again,then maximum dose..Plus they took oxazepam away, which was actually good decision. Suddenly I started to sleep(more like coma) with Temazepam and Zyprexa and 10 mgs of melatonin,
but I wasn’t myself anymore, like something wasn’t right and I was in my imaginary world. I also felt really bad when taking Zyprexa this second time, restless and terrible, my feet felt weird and restless and I got neck spasms . After year (I spend months in mental hospital), I quitted every other drug than benzo(which I try to quit), because I got muscle cramps even in my eye muscles because of Zyprexa and taking it felt like torture. Actually whole treatment in the hospital felt like torture and I would be better without it. Good thing I didn’t go nuts when quitting Zyprexa, but it wasn’t far, and I am even more disabled now and sad when I have realized my state, somehow this drug kept me in a state where I didn’t even understand what happened, who am I, which in a sick way was a blessing. Maybe I should have tapered Zyprexa in months, but seriously I couldn’t take it anymore, because everytime I knew I had to take of Z, and the nasty oversedation and RLS feeling started, I just couldn’t stand it anymore. I don’t know how I am even alive anymore because I have had so dark suicidal thoughts every day, because I have different bizarre symptoms every day and can’t forget it even for a second. I don’t remember how it was to be normal person, enjoying things and feel just okay. I am suffering so badly, like my world has gone away, and I remember waking up every morning to shock, but not anymore, this is my new normal..Like the world I had inside of my head, my emotions and my personality has disappeared, which was me. My goal in life is to stay away from doctors and psychiatry and meds. I haven’t had any positive effects of any drugs after Lexapro.It is crazy how life can go from okay to hell in a year and in many ways I regret quitting Lexapro. Taking it was not okay, but after quitting it I have been in hell.. I’ve had enough bad experiences of crazy overdrugging and being a test animal of taking multiple meds at the same time. Last time I saw a psychiatrist, he asked would I like to try new antidepressants for my depression?
Hey! How are you feeling now? I’ve experienced something similar to you. I was on ad’s for 10 years. Quit them in 2014. Withdrawal hit me in full force in summer 2015. Ended up in hospital and was put on a lot of drugs. I have lost myself. I can’t function anymore. My physical health is ruined and I’m only 26. For the last year all I have been able to do is to walk to the fridge and toilet. I have severe nausea, dizzyness and my body just doesn’t feel like it belongs to me anymore. Exercising makes me feel like I’m in hell. I just want to crawl in to a cave and wait for the day I die. I have daily crying jags, I want to harm myself, I feel violent at times. I feel I’m a miserable creature and I should die. Thoughts that are not at all typical for me. It feels like my body can’t tolerate any meds any longer. I hope you are feeling better and have started to heal, hopefully I’ll heal someday
Hi Lexaprohell. I’m so sorry for all you have gone through. You have posted this a while ago and I hope the intervening years have been good to you. I have found that if I cut my during an extended 3 day fast I have no withdrawal symptoms. Well I can cut 20X without wd more than when non-fasting without wd. I am tapering off of Wellbutrin and Prozac. I started 9 months ago. I am down to 33 mg Wellbutrin and 8 mg of Prozac. I can see the path that you took very clearly. I hope I can avoid it. Fasting. It increases Brain derived neurotrophic factor by 3.5X and increases human growth factor. It has been used for healing for literally millennia. It’s hard to fast but it is so worth it. There are lots of resources online about fasting. It really allows for accelerated healing. I’m so sorry this happened to you.
I have posted about October 2016. Meantime I moved from NorCal to Wisconsin. Withdrew from Luvox, Frova, Vicodin, Phenergan used for OCD and chronic migraine. Tremors now lessened. Visual anomalies and GI probs abound. Diet purely reactionary. Wisconsin neuro doc said the worst of above drugs was phenergan, but that all psyche meds back to 1986 are to blame and it takes a long time to get it out of your body. Good docs in Wisconsin, finally. Specialist in NorCal were clueless. GP there was good. So how long does this go on? Don’t know. It’s been 19 months. Going for full GI workup next. Docs here are very kind and working on it and I’ve only been here 2 months. Wish I could transplant old GP here because he would love working with these docs!
I believe that I have been damaged so bad by these drugs that I will never heal , I was placed on a antidepressant after getting food poisoning many years ago , after stoping them after 2 years of use as I felt better I was fine for a couple of months untill I developed depression so bad the doctor put me back on said I needed the drug , now I no it was withdrawel , I was left on venalaxafine for 12 years untill I hit tolerance , I suffered anxiety extreme sweating and shakes this continued for about a year my doctor just kept upping the dose , untill I could take no more , so my doctor just stopped the medication no taper and place me on citalopram , then all hell broke loose not only did I go into withdrawel from venalaxafine I had all the start up side effects from the citalopram, my body went into shock , the sweating hot flushes burning skin anxiety was unrelenting , if I had a gun I would have used it on myself it was that bad , so after 5 months on citalopram I said to the doctor enough was enough do something or I will take my own life , so over the next 12 months the doctor placed me on quetiapine mirtazapine, lamotrigine, flouxetine, buspar , and the evil pregabalin, telling me that we just need to find the right medication and it was all anxiety based , I wasn’t anxious I was in the most physical torture you could inflict on a human being , I was taken of all these medications cold turkey no tapers , to make things worse I was in such a bad way and would have done anything for a hour of relief I was talked into having ect , I had 12 sessions of the most evasive thing I have ever had to do , it did nothing for me my physical and mental anguish , I have been of all meds by c/ t for 8 months , I live in a world of torture I could not wish this on any other human being , the constant burning in my face hands and feet are unbearable, I sleep 2 hours a night where I am so hot and burn , my brain feels like it is on fire all the time , chronic fatigue , no appetite , but worst of all is the deepest depression ever , I have constant thoughts of suicide because of the suffering and I can pray for death , I have never smoked or taken a illicit drug in my life , I don’t drink , I have a wonderful family and I did have a good life , I was a honest and decent man , but people in power who have no knowledge of how strong these drugs are and have not a clue about withdrawing people safely , have taken my life and left me to a life of suffering , if there is a place such as hell it will a picnic compared to this , I didn’t have a choice of a slow taper , 6 drugs removed over a 12 month period , and no chance of a reinstatement , which one as none helped me at all only added to my misery , I believe I am beyond help , I hope that some day there will be something to help people’s suffering , I probably won’t be here to see it , the worst thing for me because they are labelled doctors no one is accountable, they took my life , because of food poisoning,
Dr David Healy I have been reading post now that date back to 2012 and your referral to that the problem is trying to be fixed , now that we are in 2018 how nearer are we to find a end to all this suffering how further have you got to a answer to this , it’s ok to say we are looking for a way to end this but if your the sufferer it is hell when you are not in this position you are the lucky one , I don’t seem to be able to find any research on the web to say that any thing is being done
There is very little research being done that I know of. Part of our interest in the RxISK Prize and research linked to it is that we figure it will shed light on dependence and withdrawal also and to akathisia as well. I and we can only do what we can do – we aren’t getting a huge amount of support from people with PSSD, akathisia or dependence to try and make this happen. Somehow people with the conditions that need answers don’t seem to mobilize or get together in a way that would force the system to come up with answers. It is going to take some of you to make a difference. Over the last few years the people affected who have tried to do things have struck me as being incredibly smart – what it needs is some way to mobilize everyone else who seems to be sitting back waiting for some expert (who has no motivation to solve the problems) to come up with answers. They are not going to.
I think the problem is David some people are so adversely effected as you know just getting through a day is hard enough and they haven’t got the confidence fight left in them to feel they can do anything that’s going to make a difference especially after repeated denial they have come up against when they have tried to find answers to the place they have found themselves in.
Im now 6 years off paxil and i was hit with a huge increase of my symptoms plus new ones. Im now in extreme suffering, all medical testing normal. Vertigo, dizziness persists im bedridden now
I’m just updating to let people know how I’m doing I last wrote up on in here in October 2017 so we are another 12 months on and I can honestly say I am worse I now believe this is permanent my physical symptoms are hell the burning skin the headaches the constant cortisol spike the over whelming feeling of being ill I’m unable to excersise due to heat intolerance I feel faint all the time I sweat and flush constant throughout the day I manage to sleep for about 3 hours then wake with a jolt and my body is full of cortisol and I have a inner tremor and agitation that is with me all day I can’t eat or drink without some sort of reaction mainly overheating and the anxiety is full on I have been plagued with suicidal depression constantly and emotional beyond apprehension I cannot listen to music or watch tv for fear off crying and making my self emotional which ramps up my symptoms I have severe bouts of apathy and anhendonia the pulsating tinnitus is worse especially if I lie down my family has been destroyed all my loved ones are in despair now to be honest they have had enough of living with someone who is this unwell for so long it has put their lives on hold they live it with me .
I have had to give up my work my hobbies everything that ment so much to me it’s 24/7 I keep going to the doctor trying to find if they will try and help me and support me but they say they can’t do anything for me one doctor I saw 3 days ago has given me a prescription for propanolol to try and lesson some of the physical side effects but the last 5 years I havnt been able to take a simple supplement as I am so sensitive not even fish oil so what’s the point to all this . Research is going nowhere there is still no help the doctors like David Healy are so far and few between if we are not taken seriously then how do we ever get help I am not asking to be cured just to ease some of the symptoms would be nice but still there is no research to help us
The sad thing is I have been a member of 3 different groups and since January this year 12 members have taken their own lives 9 women 3 men many who I have spoken to who were suffering terrible symptoms that is just the ones I know how many others are dying because of this suffering not realising they in withdrawel when doctors don’t believe dr David Healy recognise this is happening so how long before other doctors start to take it serious . The drug that harmed me was venalaxafine this year 4 of my friends have been placed on it but not one for depression and anxiety they are happy people but for other reasons menopause and headaches one even for a bad back from a sport injury if doctors can still issue these medications for them purposes then it’s obvious that they still don’t recognise the harm so we are all screwed . It has been over 5 years now how I’m still here is a miracle I hold on for hope but I think I am kidding myself I don’t think they want to help or cure us we are just damage to a profit making machine
how are you now Terry? please let us know