A forum for people to share their stories on drug side effects.
If you or your partner, parent, child, or friend has been through the “system” — injured by treatment and possibly trapped in a Kafkaesque world when you haven’t got the help you needed from doctors, regulators, or anyone else you thought should be there to help — it may be helpful to share your experience, so that we can all have a better sense of what is happening.
Note: We will not be editing these posts, so please only share what you are comfortable making public in this forum.
—David Healy
Have had many unpleasant experiences, mostly with a year of high-dose neuroleptics (Stelazine, up to 75 mg per day if you can believe it). Thankfully no permanent harm that I know about yet.
Here I share some of the good rather than just the bad as it seems that the “one-statistical-size-fits-all” approach to drug therapy is doing a lot of people a disservice and sometimes turning them against medication which, if used more cautiously, could sometimes still be beneficial. As I recently said to one of my doctors, I am all for evidence based medicine, but the evidence is me.
After an acute psychotic episode in 1986, which in long hindsight was the end of a manic episode, I regained sanity within a week on Thorazine. However my new psychiatrist had little to go on but the medication I had been prescribed in another country while psychotic, and a family history of mental illness, and decided that it was important to maintain me on a neuroleptic.
When this didn’t result in any improvement he simply increased the dose, added anti-depressants and cogentin, and waited for progress which never came. Fortunately after a year of no progress I was admitted to day hospital and another doctor decided on a different approach. He took me off the Stelazine and put me on Lithium and within a month I had a job and was functioning much as my old self.
Gradually the case for a Bipolar 1 diagnosis became clearer. I was vigilant in avoiding mania because I was terrified of once more becoming psychotic. The strategies that have kept me out of hospital since 1987 include regular, usually weekly, counseling with a trained therapist (usually not a psychiatrist), and titrating doses of a number of medications, rather than constantly taking drugs at a steady dose.
Initially we took this approach with Lithium, maintained at sub-therapeutic levels for most of my therapy because doses resulting in the therapeutic range would have almost certainly been physically harmful. At times of greater instability, with the knowledge of my doctors I would increase the dose for a few days or weeks to a level that put me in the therapeutic range (1,800 – 2,400 mg). Anti-depressants have been similarly used but must be switched, reduced or stopped at times, either to prevent mania or so that a drug holiday re-establishes efficacy. Perhaps because I had such a brutal initial exposure to the world of psychotropic drugs, I generally tolerate anti-depressants well.
For the past six years I have managed only on intermittent clonazepam (sometimes as infrequently as once a month) to ensure that sleeplessness or hypo-mania does not get worse and anti-depressants for some of the year. Last summer we discovered that electrolytes were far more effective than anti-depressants at dealing with an intractable annual summer lethargy which always resulted in depression. The combination of electrolytes and the anti-depressants I am always on in the summer led to the first potentially risky bout of hypo-mania I have had in many years. Even then a couple of days (rather than ongoing) treatment with anti-psychotics, and stopping the anti-depressants, was sufficient.
While anti-depressants are convenient and generally effective, and titrating the dose according to my mood works very well, I have often found that sleep deprivation (being forced to get up after only four or five hours sleep) can be more effective at quickly raising mood, though this does not work in the case of the depression that gradually results from heat-induced lethargy. It also requires a strategy that will get me out of bed early when depression is pushing me hard in the other direction.
The most effective treatment strategy for mania seems to be to manage sleep and other physiological symptoms of incipient mania with a brief intervention so that I never go for more than 48 hours without sleeping. On a few occasions a very brief course of an anti-psychotic has been necessary, but usually some other sleep aid (benzo, imovane, a carbo-loaded stomach) is sufficient.
While I recognize that not everyone’s mania is as easily subdued as my own, I am amazed that very, very few of the dozens of doctors I have seen over the years are familiar or comfortable with the approach that I have taken. Had it not been so clearly effective for me (and had I not had the same physician for almost two decades who was willing to go along with it no matter what my psychiatrist of the moment thought) I shudder to think where I might be. Providing bipolar patients with this flexibility regarding our medication might considerably improve compliance and thus both quality of life and overall outcomes.
Thank you for the work that you do!
The system, here in the UK at least, has been designed in such a way that
patients, like mushrooms, are very much kept in the dark about the dangers
of certain medications.
When one cannot get straight answers from their prescribing physician then
a regulator, the “independent” body created to ‘watch out for us’, should
give us those answers.
Truth is, they don’t, they can’t.
On the subject of SSRi’s, they stonewall, deflect and buck-pass. Their
latest being the SSRi Learning Module they have rolled out for doctor’s in
the UK. [1]
The withdrawal section is pure deflection where they recommend to doctor’s
that any patient suffering severe withdrawal should be sent to a
‘withdrawal specialist’.
On asking the MHRA for a list of said specialists they, more or less, told
me to ask my doctor – this is the line pharmaceutical companies use when
you enquire about one of their products – it’s designed to make you go
away, a policy tied with red-tape, if you will.
In truth, there are no SSRi withdrawal specialists – how fast/slow one
should taper is up for debate, so why would the MHRA claim that there are
specialists?
Simple really. After years of denying there is an SSRi withdrawal problem,
they now acknowledge…but they really don’t know what to do about it. They
want to be seen to be doing something about the problem because it covers
them in garlands but when questioned and asked for evidence they revert to
the ‘talk to your doctor’ line, the same line that appears on the patient
information leaflets that accompany your prescription drugs, the same line
that American TV ads use when promoting a drug for an illness you never
knew you had.
It should come as no surprise that the British drug regulator, The MHRA,
are wholly funded by the pharmaceutical industry, their Chairman, Alasdair
Breckenridge being a former employee of SKB [Now GSK] as was their Head of
Licensing, Dr Ian Hudson.
If a patient suffers at the hands of a drug, he/she will ask questions -
when faced with constant brick walls he/she may have to seek legal
recourse, as is the case of the current UK Seroxat litigation.
Going up against the likes of GSK can be very tough, frustrating
even…particularly when you learn that one of their expert witnesses in
the UK litigation is a former MHRA employee. [2]
…and so the trend continues.
…and so the patient is suppressed.
…and so the wheels of secrecy keep turning.
[1] http://fiddaman.blogspot.com/2011/12/mhra-wishing-to-call-shots.html
[2]
http://fiddaman.blogspot.com/2010/06/glaxosmithklinemhra-when-ignorance_07.html
Bob Fiddaman – Author of ‘The evidence, however, is clear…the Seroxat
scandal’ [Chipmunka Publishing]
Hi David
I think the worse side effects I have had are weight gain and stomach upsets. The weight gain was caused by olanzapine, which I took for 10 years. This is not just a matter of a few pounds, but 6 STONES (84 pounds). I have come off olanzapine now but the weight loss is very slow, about 28 pounds over a year and a half. So I am still classified as “obese”. The stomach upsets started years ago, like an IBS thing with diahorea that was so bad I had to take 3 imodium every day otherwise I just could not go out. I am now just on a low-ish dose of sertraline (50mg). The diahorea has improved enormously since I stopped olanzapine but it still happens sometimes. I am no longer on regular imodium. Switching from cow’s milk to goat’s milk has helped as well. The main side-effect I get with sertraline is pins and needles in my hands. This has become almost constant. I have had blood tests and it is not caused by diabetes or thyroid problems so I think it must be the sertraline causing it. It is listed as a side-effect in the leaflet that comes with the tablets. Or it could be nerve damage from a lifetime of being on various anti-psychotic drugs. I also had borderline low thyroid function a year ago but with the second blood test it seemed OK. I have noticed as I get older (I am 53) I have developed a kind of a word-blindness which is a bit like dyslexia. The word might be something like “school” and I will read it as “pool”. I am sure this is something to do with brain damage caused by the various drugs I have been on. Over the years I have been prescribed stellazine, modecate, depixol, carbamazepine, lithium, chlorpromazine, valium, ativan, meleryl. procyclidine. I therefore think it is unlikely that I could have escaped some sort of brain damage, Most of these drugs were started when I was “sectioned” and had no choice in the matter. In the near future I am going to try to come off sertraline and go “med free” which is something I have not tried since I was pregnant 17 years ago. I can see the point of being on meds in the short-term when you need to be calmed, but once the person is lucid again I do not see why they should stay on meds indefinitely. You would not leave a cast on your leg after the broken bone had healed just in case you broke it again. I was originally diagnosed as “schizophrenic” but this was changed to “manic depressive” after I stopped having modecate (against advice) and made a full recovery that the doctors did not expect. I have written a book called “Toxic Ward” about my experiences and I could send you a copy if you let me know your address. (It is also available on Amazon.)
With best wishes,
Anne Marie Brian
Hi Anne Marie,
I have some of the memory/processing problems around words that you describe but so far I’ve convinced myself it is caused by age! I hope I’m right!
I remember reading in a couple of places (alas just tried to find them and can’t) that, especially for women, borderline thyroid levels can sometimes explain challenges with energy etc. Not sure if this is just another attempt at over-medicalizing things. Medicine seems to be becoming less and less accepting of diversity and not so willing to acknowledge that was is normal for one person may not be for another.
I had a look at your book … I just went through some of those experiences while being responsible for the medical decisions of a family member who has had some very similar challenges with the mental health system. It is remarkable how powerless the system can render people. I honestly believe that individuals diagnosed with a mental illness can end up more vulnerable and have fewer rights than children.
Dear Dr. Healy,
Having just in the past week discovered you and your work, I have not yet had a chance to read your books. I am only familiar with your websites and online material that documents your career.
I am not sure what your position is on medication now, but having visited your blog and the Let Them eat Prozac site, it occurred to me to suggest that somewhere prominently on your sites you provide a clear but more nuanced message on psychotropic medications for those of us who take them, and are convinced, rightly or wrongly, that to a significant degree we need to.
The last clarification I can find on line of your position is somewhere in the documents pertaining to the CAMH/Goldbloom affair of over a decade ago, in which you make it clear that you do believe that medications are sometimes helpful and sometimes necessary but they should be used cautiously and with an open mind as to what the possible harmful side effects could be. Elsewhere it becomes clear that you think that this is particularly important for drugs which have a short history.
I don’t think anyone who has taken the full range of psychotropic medication in significant doses could ever doubt your assertion that these substances are, sometimes to marked degrees, toxic to our bodies and probably to our minds. Nevertheless some of these drugs, at least for some of us, some of the time, provide benefits that we need or want even when we believe we know what the risks are, or can acknowledge that we don’t.
Doctors like you who are able to eloquently and knowledgeably speak truth to power on our behalf are heroes to us. But on another level, without the clarity I suggest above, that I hope you will be willing to provide, your heroic stand can feed an internal torment which itself aligns with stereotypes about mental health in which psychological dysfunction is seen as a culpable weakness.
It is very easy to conclude, especially when the statement comes from a prominent, knowledgeable, charismatic source such as you, that if the meds are poison, we should stop taking them. Until we do so, it is easy to judge ourselves as weak, or inadequate, or wrong, all the more so because information on how harmful these drugs can be comes from someone we admire.
A more nuanced message, on your sites, targeted at those of us who actually have experience of the benefits, as well as the risks, of these drugs, could significantly diminish the cognitive dissonance which arises when a doctor such as yourself speaks out on behalf of those who have experienced mostly or only the downsides of these drugs. This cognitive dissonance might otherwise lead some of us who are trying to use medication in ways that minimize harm and maximize benefit, to instead make uninformed choices to abruptly stop the medications that are, however imperfectly, helping us.
Notwithstanding all of the above, the important message, for general public consumption, clearly needs to be that these medications are potentially very harmful, and are being used and promoted in ways that are often causing major, unacknowledged harm to people who are vulnerable and powerless.
Thank you again for risking as much as you have professionally in order to be a leader in getting that message across.
Thank you for this message. You are absolutely right that the benefits are there and we shouldn’t lose sight of them. Illnesses are also real and can be destructive and necessitate interventions. My position is cautiously pro rather than anti-medication – even when people decide to take them for purposes I might not take them for. They key issue is that those taking medication are informed honestly about what is and is not known about the treatment they are on. It might be worth looking at the Call for Papers slot and downloading the papers on Antidepressants to see where this kind of approach can leave us.
4 years on Seroxat , took away the best years of my life (my early twenties). I had a severe withdrawal which lasted over 9 months but it took some years after that to recover. It’s been ten years now since I came off Seroxat but I’m still not fully recovered, although I am thankful that I’m not still dependent on Seroxat. The side effects were unbelievable, totally inhuman. I have been writing a blog about Seroxat and GSK for over 5 years and I have found it very cathartic. It is still difficult to believe that Seroxat is being prescribed, particularly after 4 BBC panorama documentaries exposing the side effects and the fraud. I have no faith whatsoever in the psychiatric system, and I only wish I knew then what I know now.
Dear Dr. Healy,
My son is now 21 and since 2010 has appeared to be suffering from some psychosis which could be due to smoking cannabis when out with friends who were aparently doing the same. I note your views on heralding medication for this when there are other important therapies to consider. My son has not been ‘the same’ since October 2010 when this started. He was originally started on Olanzapine but due to non compliance with tablet medication, he is now on Depixol depot injections – since he started this the side effects have been great – muscle contractions and pacing requiring acuphase, clonazepam and procyclidine Now he is not the son we, as a family knew – he is not the same -he has had some ?personality change , I believe, since being on the depot.. He is also pacing all of the time, even when standing still. Would you please advise what might be best for him – I, as his next of kin and appointee feel caught up in a world of sections (MH Act) and feeling helpless (powerless) with regard to challenging his present hospital treatment, thank you so much – RT
In 1995, after my friend had a car accident, I was prescribed the so-called antidepressant Seroxat. After just a few days on it, I felt emotionally numb and somehow different – emotionally detached but, at the same time more confident and high at times. The drug kicked in fully at 6 weeks but I was always feeling emotionally detached right from the first day of going on it. After 6 months on it, it was time to come off it so I went about withdrawing. I started to feel emotionally numb ( nothing like the numbness in the original depression ), aggressive,with rage, anxious and would get electric shock type sensations in the brain along with diarrhea, vomiting, nightmares, vivid dreams and crying spells for no reason, that I never had before. I was basically in a state of emotional turmoil. I thought I was just depressed again so, I went back on it. My psychiatrist at the time had just died and in a sense, I was self-medicating but, it was because I couldn’t get off it. My parents were angry with me and I tried explaining that withdrawing made me feel just awful. Complaints about it being addictive hadn’t started back then in 1996, so I couldn’t tell my parents or myself that I was addicted. Only years later did it come to light that it IS addictive but, the makers, GLAXOSMITHKLINE have not and will not admit it. People who go through Seroxat withdrawal suffer to the same extent as Cocaine addicts. Seroxat affects Serotonin and Dopamine – the two chemicals needed to allow us to experience human emotions, feel pleasure and regulate sleep. Cocaine affects these chemicals too. I’m no expert but …. ( see youtube video “ssris are dangerous drugs!” featuring Dr Gary Kohls )
To cut a long story short, I spent 15 years trying to get off Seroxat – made attempts to quit twice a year. When I wasn’t withdrawing, I was a half zombie/half person but I could function, work, love, sleep, feel excitement, feel my fight or flight responses, etc ..I did have problems climaxing too – delayed pleasure, sometimes even painful. Every time I tried to go through withdrawal, I went through hell. In 2007, the anxiety I had because of the withdrawal, caused me to lose my ability to think rationally and I rounded up pills I found lying around the house and gulped them down in an attempt to make the madness stop. The anxiety was similar to what a rabbit feels when a dog is barking at its burrow. and digging away at the earth – that same panic. It was an unplanned overdose. I was on, what I can only describe as – auto-pilot. I didn’t know what I was doing and until you’re in a situation like that, you’ll never truly understand what a person attempting suicide goes through.
I spent 2 days in a coma and when I came round, the doctors told me to go back on Seroxat. They said I needed it to live. I needed it to be stable….but I only ever went on it because a friend had been in an accident and that was well in the past. I was devastated to be alive and to be going back to square one.. In 2008, while still on Seroxat, I noticed with the passing of each day that I could feel emotions less ans less and eventually, I woke up one morning and was incapable of feeling any human emotions. I could not feel love for anyone. I could not feel loved. I could not feel sad, happy, joyous, excited or anything. I couldn’t feel anything for my partner and lost interest in everything I had once liked. It was not a case of depression returning. Things were fine between me and my partner and there had been no recent trauma or loss in my life. I had never felt anything like this in my life. This was a thousand times worse than any depression previously experienced. I couldn’t perform at work. I had to give up my job and eventually my partner. I also noticed that I had become totally sexually dysfunctional.
I was still on the drug so, I checked into a treatment centre to get myself off it, thinking that if I did, my feelings would eventually come back and I would go back to being normal. Little did I know that Seroxat had been depleting my serotonin and dopamine over the years – eating them up as if it were cocaine I had been on. In the centre, the doctor whipped me off the Seroxat – even though when you come off it, you are told that you MUST do it slowly. I explained this to the doctor and he ignored it. I was tossed into the depths of hell. I was climbing the walls. My skin was crawling. I was like a wild animal kicking and screaming. I had never been violent in my life. A week after being whipped off the drug, I started suffering from chronic insomnia. I have had chronic insomnia now for 18 months and ANHEDONIA ( or emotional numbing ) and sexual dysfunction for 3 years. ( see youtube video by the user manfromtheuk by typing in ssri sexual dysfunction )
My family relationships are non existing after everything that has happened , particularly because of withdrawal aggression, and I have lost my partner and job. My mental health is gone. I feel nothing. I have the same ANHEDONIA that ex-cocaine users have or similar and there is no cure as of yet. I cannot sleep and get pleasure from nothing. My circadian clock is upside down and inside out. I have no doubt in my mind that this is down to Seroxat depleting my serotonin and dopamine. The problem is that there are too many Doubting Thomases who want to see to believe. I’ve even had to listen to it be said that this is a personality disorder and that this has just happened – the biggest insult of all just to add salt to the wound. I mean who is going to believe you if you say you have gone from loving your family to feeling nothing at all?
This so-called wonder drug has ruined my life. I’ll never see a penny for what their pill has done to me but, I don’t want money. I want my feelings back and the company to admit that this pill is not suitable for human consumption.
Here is a reply I got from the FDA after I told them most of the main points from above. It is an appalling reply. I tried writing to the IRISH MEDICINES BOARD but I have been told that they are getting money from drug companies so, they won’t listen either. I have written to the MHRA and no responses from them either.
—————————————————————————————————————————————-
From the FDA
We understand that you have had a horrible experience with paroxetine (Paxil/Seroxat) and are very interested in having your experience documented in an official manner. We carefully evaluate and analyze all reports that are available to us and make recommendations for possible actions if the science-based risk evaluation warrants the actions. Voluntary reports are essential for ensuring the continued safety of FDA-regulated products. Reports submitted to MedWatch are added to a postmarketing safety database and reviewed by the FDA’s postmarketing safety staff.
You are correct in that paroxetine (Paxil/Seroxat) has many possible side effects for patients of all ages including suicidality, unusual changes in behavior, anxiety, agitation, insomnia, sexual dysfunction and birth defects. Please understand that all drugs have risks and benefits. Prior to approval, FDA reviews years of clinical data to determine if a drug’s benefits outweigh its risks. For a drug to remain on the market, the benefits of the drug must continue to outweigh the risks identified in post-marketing adverse event (MedWatch) reports. It is a delicate balance in which we work hard each day to ensure that the decisions we make continue to serve the American people and protect public health. At this time, for the American population as a whole, the benefits of paroxetine still outweigh the risks. You may also want to check with the regulatory agency in your country to inquire about their post-marketing drug review process and the steps you must take to report your adverse reactions to them.
As you mentioned in your email, the adverse reactions you are experiencing may also be stemming from your doctor’s decision to abruptly discontinue your paroxetine in 2010. In the United States, such a decision is considered a part of the practice of medicine, which is not regulated by the FDA. The selection of specific drug products or treatment regimens for particular patients are decisions to be made between the patient and a physician/healthcare provider who is familiar with the individuals’ current health status, past medical history and the product labeling, weighing the benefits over the risk. When and if there is a concern regarding a physician’s medical judgment, the state medical board may be able to address the concerns. For a listing of medical boards, please go to http://www.fsmb.org/, click on member services, then Directory of State Medical Boards. Again, you may want to learn of the regulatory authority in your country for the practice of medicine and contact them to voice your concerns.
The prescribing information for paroxetine states: “A gradual reduction in the dose rather than abrupt cessation is recommended whenever possible. If intolerable symptoms occur following a decrease in the dose or upon discontinuation of treatment, then resuming the previously prescribed dose may be considered. Subsequently, the physician may continue decreasing the dose but at a more gradual rate.” You may find complete prescribing information, which is the single most comprehensive source of information about a medication at http://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?id=62976#nlm42232-9.
Again, we are so very sorry to learn of your experience and all that you have gone and are going through since taking paroxetine.
Sincerely,
SB
Division of Drug Information
Center for Drug Evaluation and Research
Food and Drug Administration
For up-to-date drug information, follow the FDA’s Division of Drug Information on Twitter @FDA_Drug_Info.
This communication is consistent with 21CFR10.85(k) and constitutes an informal communication that represents our best judgment at this time but does not constitute an advisory opinion, does not necessarily represent the formal position of the FDA, and does not bind or otherwise obligate or commit the agency to the views expressed.
Niamh
My son has been on so many antipsychotics drugs, it would take too long to describe every side effect he has suffered – but I can visit the comments section in the future for sure!! For speed, have a look at the video made for me by neuroscientist Lorene Amet. Bobby Fiddeman kindly put it on his site too.
http://vimeo.com/22527996
http://fiddaman.blogspot.com/2011/04/drugs-dont-work-story-of-danny.html
Best wishes for a successful blog! And I just love the new drug side effects site – RxISK.org. This is going to be so useful!
And I will be ordering a copy of Pharmageddon.
Way to go Professor Healy!
Janette
Please note slightly incorrect email address given on March 6th my email address is
[email protected] and not [email protected]. Thank you -RT
My name is Anne and I am a 57 year old Australian.
The position at present is I am coping with a husband in hospital who was to have surgery today but the nerve root block has helped a little so they have moved his name to the operating list for tomorrow if required. The last three weeks have been a real rollercoaster with him deteriorating and finally barely being able to walk and difficulty urinating.
It is over four years ago that I was de-toxed from anti-depressants, mood stabilizers and anti-psychotic drugs under medical supervision. If I had still had all those chemicals in my system my ability to think and cope would have been impossible.
History clearly shows that the present situation would have had me so stressed that I would have been hospitalized as well. It is so good to be able to think clearly and make important decisions.
Please don’t misunderstand, my emotions can still be very active but to have clarity of thought is a great blessing. Prior to detox it was foggy and black and any stress was greatly magnified.
Looking forward to writing my original story for you when things settle.
Dr. Healy, thank very much for giving me a space to share.
My name is Anne and I am a 57 year old Australian.
The position at present is I am coping with a husband in hospital who was to have surgery today but the nerve root block has helped a little so they have moved his name to the operating list for tomorrow if required. The last three weeks have been a real rollercoaster with him deteriorating and finally barely being able to walk and difficulty urinating.
It is over four years ago that I was de-toxed from anti-depressants, mood stabilizers and anti-psychotic drugs under medical supervision. If I had still had all those chemicals in my system my ability to think and cope would have been impossible.
History clearly shows that the present situation would have had me so stressed that I would have been hospitalized as well. It is so good to be able to think clearly and make important decisions.
Please don’t misunderstand, my emotions can still be very active but to have clarity of thought is a great blessing. Prior to detox it was foggy and black and any stress was greatly magnified.
Looking forward to writing my original story for you when things settle.
Pro. Healy, thank very much for giving me a space to share.
You know, Dr. Healy, you are going to gather a wealth of information now about all these appalling withdrawal symptoms from Seroxat, Citalopram, Effexor, etc.
We all have a story to tell.
But why has it taken ten years to do this?
I was in a garage in the middle of the night trying to hang myself after eight weeks of intolerable withdrawal from Seroxat in 2002.
I was beaten into dust by my gp and psychiatrist.
I felt I had no right to a life, after all that.
But, I had a child, I soldiered on as you do, despite feeling like the most beaten woman on the planet.
Watching Panorama for the first time gave me the smallist inkling as to what was going on here. It was then I joined litigation.
It is ten years on now.
I collect information from all the blogs and helpsites, I delve into the science of receptors and neurotransmitters, I keep up with every single word that is ever written about Paroxetine and it’s deadly weapon.
It won’t happen again, the suicides around year 2000, before and after, because of you and Fid, and Seroxat Secrets and boring Old Man and all the others on the quest to rid ourselves of this horror of ssris and chronic and disabling withdrawal.
I try not to get angry, done that and been there, but I am still nowhere.
I hang on to all the sense that comes out of reading about hundreds of others who have been where I have been, have been victims of medical malfeasance, have suffered asinine criticism from medics who have no idea whatsoever what they are doing.
It is not the way I want to be. I want my credibility back and so I suppose I am saying thanks to you now for doing this and I am looking forward to Rxisk and all that it will offer.
feeling like I’m in dangerous territory so please don’t publish if it may cause this new and important sharing to be closed.
Here in Australia, the authorities gagged the whistleblower who was publishing the information. Also a victim of these drugs wrote a book and had a wonderful forum for us to support each other but things kept happening to the site and it was closed………… work it out……. the pharmacy industry is very powerful.
My wife and our family has suffered greatly from the side effects of anti-depressants after my wide was diagnosed with PND a few months after the birth of our second child.
First it was prozac, which caused her severe anxiety and later an overwhelming desire to take her own life. I remember her saying at the time, that she knew everyone loved her and that she had everything to live for, and the thought of not seeing our children again was horrifying, yet none of that seemed to matter, or even be related to this urge to end her life.
Thankfully the doctors and cpn involved changed her medication. But rather than admit the prozac was causing the anxiety and suicidal thoughts, they said that her depression has worsened so they needed to start her on a stronger medication.
Then came the effexor, and in a matter of weeks our lives became a living nightmare. At first she seemed to improve. Her mood was definitely better and her energy levels were up. But there were other changes that started to creep in.
She started spending more time chatting on the internet, got her hair dyed and restyled, bought new clothes with money we didn’t have, started to socialize with a new group of friend etc.
At first I saw this as positive, perhaps this is what she needed. But it soon started to get out of control. The nights out became more frequent, sometimes they where all nighters. She was drinking heavily when she was out, and one night even passed out in the toilets of a bar.
The bar closed and her friends couldn’t find her yet they had her coat and purse. The police were called and a manhunt was started. It was -5 on a cold December night with thick FOG and we live in a rural area. She awoke at 4:30am on the toilet floor in a pool of vomit, only to set off the burglar alarm. This was a previously very responsible and loving mother of three children.
She became very secretive, telling me it was none of my business when I asked her anything about her new social life. We stopped socializing together and she saw nothing of her regular friends.
Soon after I was told that our marriage wasn’t working and it was pretty much all my fault. I was a controlling and abusive husband, she hadn’t ever really loved me and had spent most of the last 17years lying to herself.
Since going on the effexor she had ‘woken up’ and had the strength to speak up to me and stand up for herself. She began looking for rental accommodation. She did this in secret, but I soon found the evidence. When confronted with absolute proof of what she had been doing she flatly denied it. In fact she would do or say things openly, then when challenged about her behavior denied that it ever happened. It was quite frightening.
Her appearance changed she became puffy around her face and very heavy around her eyes. She had a blank expressionless face most of the time. The accusations became worse. She started to say that while I had never been violent towards her up until now, she always thought I was capable of it and would snap some day, and that she was also worried I would force myself on her. I was absolutely gutted hearing her say things like this.
Every now and then she would have a day or two when she almost returned to normal. She would be loving and affectionate, tearful and regretful about all the things that were happening. During one of these moments my wife fell pregnant again. At this point she was withdrawn from the medication due to concerns about he babies health.
The CPN wanted her to continue the medication saying the risk to my her health in not taking antidepressants outweighed the risks to the baby. Her GP ignored the CPN and got her taper from 300mg daily of Effexor XR in 2 weeks. She had been on it for over a year at this point.
About 8 weeks later, my 16 weeks pregnant wife left me and took or 2 and 4 yr old children with her, registered my daughter in a new school district and moved into a rented house with a 1 year contract.
Times were tough, but to cut a long story short, she deteriorated badly, the cpn wanted to get her back on the meds, and if not she threatened to get social services involved. My wife resisted.
One day, about 4 weeks before the baby was due, she came home. She was filled with confusion and almost disbelief at what had happened. She described it as waking up from a bad dream and thinking, how the hell did I get here? She never returned to that rental house. We are being sued for the remainder of the 1 year contract as I type this.
This happened a year ago now, my third child is now born and healthy, my wifes recovery is almost 100% complete. Our children are happy and doing well and we are starting to pick up the pieces of our broken lives. We nealry lost our house as part of the fallout, but are managing to hold on for now.
Despite all this the GP and CPN still refuse to believe it has anything to do with the drugs. They feel that they know our lives and relationship better than we do, and that the drugs just don’t do that sort of thing. The GP has refused my wifes request to submit a yellow card and instead ordered a blood test to try and explain away some of her remaining symptoms.
This is a subjet that largely gets ignored. Becasue it isn’t as serious as suicide or homicide there are very few discussions about this and little research. The realted research I can find is that of Helen Fisher Phd who talks about the role of brain chemistry in love and attachment. It is very interesting and she ends with a warning about how antidepressents effect these brain functions.
There is a very long discussion about SSRI and marriage on the topix website. This has now been on going for 5 years and has over 5000 posts. Many of the stories are so similar to mine that I could have written them myself.
http://www.topix.com/forum/drug/effexor/TQ4I2UR28DFD3N759
Thanks DR Healy for all you work. You are one of few voices of reason regarding these dangerous medications.If it weren’t for the likes of you, Robert Whitaker and Helen FIsher, I would probably have started to doubt my own sanity long before now.
Please use the term ADVERSE effects. They are not side effects. They are direct adverse effects; not indirect side effects. Thank you. J -
Please report ALL serious suspected adverse drug reactions (ADRs) to the relevant authority in your country. If in doubt then report to the FDA in the US.
In the UK patients can now report to the MHRA at http://www.yellowcard.gov.uk – unfortunately the MHRA do not appear to provide analysis of the ADR reports unless a request is made. I was involved in an Advisory Group Analysis of Yellow Card Patient ADR Reports and according to Professor Krska from the Evaluation project, there were almost as many reports of suicidal ideation as of a rash. There are many drugs that trigger depression and psychosis.
The MHRA do not have enough power to make the pharma companies comply in provision of good data for patients. There does not appear enforcement of standardised information among the different manufacturers.
Of course Dr Healy & colleagues RxISK web site will be invaluable for analysing the ADR reports and I hope they will accept those from people bereaved, as I am, due to ADRs.
From Millie Kieve founder of APRIL (Adverse Psychiatric Reactions Information Link) http://www.april.org.uk
Hello there! My name is Marios (male) and I am Greek but I have spent nearly 10 years in the UK, as I was educated in Cambridge (I am a linguist, with a PhD in theoretical syntax). After that I moved to MIT for 6 months, and then to Belfast for a temporary one-year position. I was diagnosed with Bipolar II in 2010 (initial diagnosis was schizoaffective disorder) and I wanted to share my horror story in Belfast, which nearly cost my life, which involves prozac, and which reminded me so strongly of cases I read in your books. When I located in Belfast I was referred to a consultant psychiatrist. He saw me and he decided that I was hyper (although not really hyper as he said) based on how fast I was talking. I told him that I am talking like this, and that this is a personality trait but he did not agree. Anyway, I was taking a ‘lethal’ mix of fluoxetine (had been on it for more than two years and on high dosages but in Belfast the dose was 20mg and I had been taking it for anxiety rather than depression), lithium, valproate and seroquel. The consultant gave me a one month tapering protocol (20mg 3 days per week until the 4th week after which I was supposed to stop taking it) and an appointment two months later. I told him I was worried something might happen (until then I had always been monitored for any drug change) but he said I should not worry and everything would be fine. Had I read your books earlier I would have thought otherwise. The funny thing is that I told him that when I was taking 60mg per day I tried to stop taking it on my own and I got crazy and had to restart it. Anyway, I did what I was told (and what the books say presumably) and within 2 weeks I switched to a severe depression from one day to the other. I was crying, I was hopeless, I was crouched on the couch, I was in terrible pain, I could not sleep, I could not feel happy about anything, I could not eat (which is strange because normally my depressions until then involved too much eating, too much sleep and would not involve that kind of intense psychic pain (and I had been through recurrent bouts of depressions since I was 18)). Moreover, I was very suicidal, for the first time in my life so actively suicidal. I tried to contact my gp (i went to the surgery crying and asked for an appointment and they said they could not give me any. I said what am I supposed to do if I want to kill myself, and they told me go to the A & E- I said I am afraid I will rather kill myself). While walking back home, I saw the bridge, and being in a trance, I started climbing over the fence. Someone grabbed me, I hit them, and then walked home. I had never hit anyone in my life before. And this happened so suddenly, it just came to my mind when I saw the river. It was not preplanned and it was very impulsive. The following day I tried to swallow all my pills, but a friend saved me. I was also trembling like crazy, I was dizzy, I had diarrhea, and I was sweating, and my legs were killing me- I wanted to move them all the time. I stopped taking all my drugs in the hope I would become hypomanic. Big mistake, I started having ultradian rapid cycling, which I had never had before, and I wanted to kill myself, because it was unbearable. My gp called me and told me to start all the meds, including the fluoxetine. I did that and the trembling, shaking, sweating and the diarrhea went away, but not the depression and not the suicidality. I saw the consultant and he told me this was a relapse, and not a withdrawal symptom. He thought I should be taking the fluoxetine (in the 20mg dose) and that I should increase the seroquel, as my sleep was non-existent, and then asked me why I did not call him. I told him you said nothing would happen and to call the gp for anything. This is what I did. He said you have to call me. I hated him, and I wanted to get a new one. I started feeling slightly better, but I would become suicidal within seconds. I was very unstable. I tried to commit suicide twice after I saw him (with the drugs he so nicely prescribed me), and I was saved again by chance (and because the attempts were not planned). Within hours after the attempts, I switched to maniacal laughing, I could not sit down, I cleaned all the house, I cooked, I ate, I drunk, I did not sleep for 5 nights in a row, I marked 20 essays in less than 2 hours, I wrote comments, I thought about a new analysis for a syntactic phenomenon, and I would go up and down, up and down. And then, suddenly I started feeling really bad again. I decided I could not trust the consultant, so I wrote a complaint to the Trust, putting pressure on them to give me someone else. I also decided that if I were to remain alive I had to take action. I went back to Greece for Christmas, where I did two things: a) changed from fluoxetine to clomipramine, a drug that had helped me in the past with depression (as opposed to fluoxetine which did only two things for me: apathy in high doses -this let me finish my phd although I was recovering from depression- and it reduced my anxiety); B) stopped taking the seroquel (since I thought it was not helping me at all- no one had bothered to explain to me that maybe a higher dose should be tried .Big mistake, and the result of self-medication, which was linked to my inability to trust the consultant. I nearly committed suicide on New Years Eve (I was alone at home and had stashed 40 grams of lithium) but the attempt was aborted. I returned to Belfast, I had now moved on to a mixed state (not rapid cycling any more- I was both depressed and hypomanic at the same time). I abused people at work, and I decided I had to see the gp. I also attempted suicide again, put 2.5 grams of clomipramine in my mouth and let it dissolve. A friend saved me (I had posted sth on fb, and many times suicidal people are ambivalent until the last minute). My brother insisted I go to the A & E, but I refused: I could not wait hours in the line, I was not feeling well. A few days later I saw the gp who referred me to BELDOCS, and they urgently referred me to the clinic where my consultant was. They thought my meds were in a mess and I really had to see someone the following day. They also thought that my lithiums levels were not appropriately checked. The following day I was told that I had to see the same consultant again. I saw him almost a week later. However, in between I could not handle the situation any more – I could not sleep at all or very little, I was depressed by also had an energy that agitating and which sometimes manifested itself as psychomotor agitation. This felt like being thrown from one wall to the other. I decided when the term would end I would kill myself as there was no hope any more. I saw the consultant (my mother was there too as she had flown to Belfast to save my life), but the meeting did not go well (at least for me). I did not say anything. I only told him I chose the clomipramine because it is highly toxic and I wanted to use it in my completed attempts. He prescribed me one month of clomipramine and seroquel, and did not give any guidance to my mother wrt. safety. My mother knew I had to have no access to drugs and she would have to monitor me all the time, because she was told that before coming to Belfast. No one ever bothered to check my lithium or valproate levels, even though I had switched salts in Greece and I mentioned it to my gp- the psychiatrist said this is your gp’s responsibility. He could not even remember or check what my lithium levels were. Anyhow, on the same night I injected 900 units of insulin lispro (fast acting insulin) but I did not manage to fall into a comma (probably because I am type II diabetic). I was so furious but also so triumphant, I had done it and although I had failed I would try again, this time with more toxic drugs. I tricked my mother, took all the drugs from her, and I hid them in my room. When I had finished marking everything, I wrote my will, a suicide note and swallowed all the pills (7 grams of lithium, over 2 grams of clomipramine and many grams of seroquel). I had read 5 grams of lithium was a lethal dose. I did that without any feelings, and without any remorse. I did not even say goodbye to my mother, I wanted to eliminate myself. I thought it was a good idea that my mother was there, because she would take care of everything after the suicide. I ended up in the A & E and then to the admissions unit (this was also chance- my mother woke up to go to the loo and saw my light was one and found me on my bed with all the blisters next to me). The doctors said I was lucky, because my body was used to these drugs, but I knew I had made a mistake: I did not take into account the minimal dose per kg, and given that I am quite obese, I did not take the right dose that would definitely kill me (although I got a potentially lethal dose). I was discharged after I saw a nurse and a trainee who asked me among others: did you regret it? and i said, i regret my mother had to go through this ordeal, but i do not regret the attempt. I cannot live like this, and I cannot have an academic career like this (which is also what I wrote in my suicide note). They wrote that I regretted the attempt (saw that on the discharge letter to my gp). They told me that there are no beds in Belfast and that I would see someone the following day. No one ever called me, no one, not even my gp to whom I wrote a message saying that I was still suicidal. My consultant, who, under the pressure of my mother, had decided to give me a nurse and to see me once a week (although this is not predicted by the system, but he had seen me once per week when I initially got depressed, and I cannot imagine that a doctor does not do their duty due to managed cared reasons). And in fact it was my mother who saved me, because she took charge and flew me back to Greece, 5 days after the discharge. There I was seen by a psychiatrist twice per week, I had psychotherapy, and I stopped the clomipramine (and never restarted the prozac). One day I woke up and I was hypomanic.
Although I fully recognize that I made a lot of mistakes, I still think that this thing I went through was something only few people would be able to handle. It was a terrifying experience, it was a part of myself I had never experienced before, and to be honest until now I do not know what happened. The Trust never bothered to explain, although the law says so. And the psychiatrist never bothered either. Maybe, they did not know, but after having read your books I have started thinking that maybe I am also an SSRI victim. My case shows that even if you have been taking a low dose for some time, the amount of time you have been exposed to the drug definitely plays a role as well. Moreover, it shows that doctors must warn patients even for this remote possibility– I was not warned and this is what made the whole thing even more dangerous, as I was not prepared. Moreover, it shows that the NHS is not built to deal with such emergencies. I know this because I was diagnosed with diabetes when I was in Cambridge, and although I was really sick I had to say the magic words (namely: I have a history of diabetes in my family and I think this is diabetes), in order to get an appointment. Suicide, however, cannot wait, it is a situation that changes all the time (dynamic) and one moment you want to live and the next you just want to kill yourself. The funny thing is that suicide had become an obsession for me- I would wake up and live day after day with this obsession, and it was my only hope. Moreover, I wanted to get a gun and kill people and then kill myself, an idea I never had before. I wanted to set the house I was living in on fire and kill everyone inside. I wanted to hit people on the street, I hated everyone. Then I decided I would hang myself but could not find the proper place in the house I was living in, so I ended up with the next lethal thing I had: drugs. If these would not work, then I would use knives, my last option as they do not seem too effective. Now, I am not suicidal at all. Everything has changed within 3-4 months. I fear that this monster may come out again, but I have decided to read about bipolar and about drugs and learn more, so as to prepare myself. As for my doctors, I am sorry to say this but I think they have failed me on many levels: a) they did not manage to build the alliance (which may keep you alive) although I was a tough customer, too; b) the treatment was not working and my self medication made things worse. When you feel you are not improving, you become hopeless and then you may actually kill yourself; c) there was not psychological support. The consultant kept on repeating that I could not do psychotherapy (any kind) while depressed, which is not what I have read. d) there was no real explanation of what I had to do and why. I am the type of person that needs explicit information and I was not given any, or any treatment plan, or any emergency plan (probably because no one thought this would ever happen) and I did not ask for any (as I was not warned). Bad combination, and pretty lethal.
All in all, I am still wondering if this was drug induced or not (or partially drug induced) and whether I may go through a similar and equally lethal episode in the future. If yes, I need to accept this, and prepare for it.
All the best
Marios
This is taken from my blog and describes my experience, it’s taken me from 1999 until now to find a way to get myself off Lustral, no help from my doctors surgery, had to do my own research, I know my situation is far from unique but God help those people who don’t have the wherewithall to research and question their “medication”, sadly I know a lot of people now who have been affected badly by SSRI’s, I’ve documented my whole journey in my blog:
I was prescribed Lustral (Sertraline) for post natal depression in November 98. I was desperate for help to lift me out of the terrible blackness that consumed me, I loved my baby but there was no joy in my life just all consuming anxiety and misery seemingly with no let up. I would feel slightly better as the day wore on but I would long to go to sleep (despite the night feeds) as an escape from my feelings. I would wake up in the morning for it all to start over again, I felt like I was just “going through the motions” and just “existing” and of course having a new baby and a toddler forced me to keep going through the motions for their sakes and put on a front to the world, but I felt like I was in a bubble looking out at everyone else getting on with life. I felt embarrased, ashamed, confused, bewildered by my emotions, every other new mum was fine so what was wrong with me? the feeling of isolation was enormous. I had massive reservations about taking Lustral and asked my doctor for reassurance that they were not addictive and I would be able to come off them when I wanted, I was reassured. I was also desperate. They were very effective and within 3 weeks I felt like a massive weight had lifted off me, in fact I felt as high as a kite the first few weeks until I got used to them, I was functioning “normally”. I was so grateful. I often wonder now, what would it have been like, if instead of taking a pill, I had had lots of support instead.
A few months later I decided I was feeling well enough to be able to come off the Lustral. Without asking the doctor, I just stopped taking them, cold turky, a few weeks later I was back in worse shape than before, I was shocked and bewildered. I started taking them again. I asked the doctor and was advised to come off them by taking them alternate days for a fortnight, then every 3rd day for a fortnight, then every 4th day and so on….each time I tried I the anxiety and depression returned like a tsunami, I tried toughing it out, I tried herbal remedies, I tried counselling, I tried healing, meditation, exercise, you name it I tried it, the years ticked on and 10 years later I was no further forward, my doctor and husband were convinced I had a “chemical imbalance” that needed the Lustral, I however never bought into that theory, and truly deep down I was horrified that I was being held hostage by a drug I couldn’t stop taking, it’s hard to describe how that made me feel, people would say but “if you were diabetic you’d take insulin wouldn’t you?”, but it’s hard to describe to people how numb you feel, you can’t feel any proper emotion, no joy as such, you are just “flatlining” to quote Phil Lawrence in his “Numb Documentary”. I didn’t want to feel numb anymore I wanted to feel things. Then I found the book “Coming off Antidepressants” by Joseph Glenmullen and I discovered there was hope, I could taper off the drug, the first time I tried it in 2007 I switched to liquid prozac and went to0 fast and crashed and burned again, I was now beginning to get REALLY phobic about doing it. After lots of study on the net me and Peter drew up a plan of action, an excruciatingly slow plan of action, and that’s where this blog begins in May 2008 when I started my excruciatingly slow taper off liquid Prozac.
This is how akathisia felt for me, also taken from my blog:
5am and for about the 3rd night in a row I’ve barely slept a wink, I can’t stop the adrenaline pumping round my body, my stomach is tightly knotted, I’ve barely been able to eat properly it makes me feel sick. I’m clammy, sweating and crying and P is trying to reassure me, but he has to go to work. I get up and drag myself through all the motions of the day and making sure boys get to school, I feel like the living dead, I make sure they get fed and make sure they and no one else is aware of what’s going on, I don’t hang around at the school gates. Oh I do kind of tell a few people I’m not really feeling right but I play it down. The constant adrenaline is tormenting me on the inside and I can’t stop it. It’s been building up over a period of months and I’ve been fighting and fighting the feelings but it seems to have reached a peak of exquisite torture. It’s like being at the top of a roller coaster that never stops. Someone else mentioned birdsong, and it was a funny thing, the torture was worse in the mornings and over the summer months while it was slowly building, birdsong in the morning outside the window had become a kind of torture as well. I had to go to work only 2 days a week and God only knows how I managed it. I had taken my last Lustral tablet months ago, and come off it as per the doctors instructions, and now my depression/anxiety was back tenfold to punish me for daring to presume I could stop taking it. I must be wired up totally wrong, no one else feels like this do they? What is wrong with me? Maybe I really am insane, maybe I just can’t cope with life without my tablets, how come everyone else can cope with life, and I can’t? There must be something fundamentally wrong with me. By now the Orwell Bridge was beginning to look a bit attractive and I just wanted to escape the adrenaline surges torturing me, my nerves were in shreds.
Thank you for starting this blog and forum up.
my story
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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 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 ….i had an underlying depression ….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 said 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 18 months free and still suffering …. 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 for my mother.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. i simply aim to just get through today and let tomorrow worry about itself.At 18 months free of it im finding my days are more bearable ..i now however seem to have no energy whatsoever ..i could sleep all day and night and still feel i want more sleep. my enthusiasm and zest for life has just totally gone. i hope it will return in time.
heres a nice statement i came across:
Time and Nature will be your best friends in your healing process. In this battle you don’t fight to win because you can’t. You simply will survive it. Focus on the thought to survive this, and you will, just as other individuals did. Don’t force yourself to become the person again that you were before this, but make a statement to yourself that you will come out of this “trip.” Make this statement to your self everyday, every hour.
I am living the nightmare now. Been on paxil for 18 years. Was at 50 mg with buspar. Nothing worked. Anxiety all the time. Sought counseling and she suggested a psychiatrist regarding my “medication.” So off I go to a 90 year old psychiatrist and he asks “what do you want to take?” I guess it was my decision. So I chose cymbalta. Don’t know why really. Oh and yes, I could take hte paxil with the cymbalta. (that is what he said) Go to get prescription and pharmacists comes out to tell me I can’t do this. Seretonin Syndrome. I might die. Okay, so let’s wean (fourth attempt in 18 years). 90 year old psychiatrist says “go by 5 mg and you’ll be fine.” So I wean and take the cymbalta. OMG!!! I was lying on my cellar floor crying my eyes out for days on end. Now I am down to 20 mg of my paxil by November (four months). Way too fast!!!!! That should of taken me two years to do.
So I stopped the cymbalta cold turkey. no more. Stayed on paxil and am at 20 mg right now and can’t go down anymore. I feel absolutely horrible and if someone gave me a gun today I would killl myself. Honestly, I would. I have no pleasure, no feelings, nothing. I hate myself, I hate my life, I hate everything.
The waves of withdrawal are excruciating each and everyday. I plan to drop more, but have been very resistant. I want to feel better again. That is all I ask.
I was misprescribed a Fluoroquinolone antibiotic – Ciprofloxacin with an Nsaid for what turned out to be a training injury, not an infection.
I was an athlete prior to taking this drug with no history of health problems – physical or psychological. After completing the course I experienced consistent:
Huge panic attacks, peripheral neuropathy – shocks/buzzing/fasciculations including optic nerves and teeth. On the sixth day post Cipro I experienced a whole body electrical meltdown as if I was plugged into an electric socket with acid/ant sensations buzzing across my body. Myoclonic jerks, what I called chemical insomnia which prevented any more than 2 hours sleep a night for a few months. Tinnitus. Intra-cranial pressure/horrific headaches. Tachy and brachycardia. Burning sensation in spine. Night terrors. Hypo-postural tension to the point of almost passing out on standing up. Full involuntary retraction and return movement of fingers. I was unable to work for 5 months as a result of this drug. Two and a half months with these horrific symptoms I was given a small supply of Diazepam. These caused me to shake violently on awakening and ramped up anxiety levels and startle response to the point that I was unable to leave my home. Then the documented musculo-skeletal symptoms began – my whole body began to click/crunch – all my joints were audible to my friends, family and work colleagues (who visited), to the point that I was barely able to move without fear of breaking something. I developed electro-sensitivity – around electronic equipment, refrigerator, lighting etc I experienced a buzzing sensation through my head and arms especially.
All symptoms dissapated over the course of approximately a years with the exception of the head pain/intra cranial pressure which I still have fifteen months on if I try to return to significant exercise. I hope with time this will resolve despite the fact that the US warning label includes a black box for this symptom as potentially irreversible.
This drug almost killed me. I found a community online of thousands who have been permanently disabled with bodily and neuro damage from the Fluoroquinolone class of antibiotics. Many are offered Benzodiazepines and anti-depressant drugs to help with anxiety and neuro pain – often these exaccerbate problems or create new ones.
Have stumbled across this website looking for information on what anti depressant is suitable following serious allergic reaction to fluoxitine.
I had a post natal depression following the birth of my eldest child 1999. Initially I battled on but sought help after his 1st birthday as I loved him dearly and recognised that we were all missing out …felt permenantly exhausted, useless and hopeless. I was prescribed fluoxitine and referred for counselling luckily the 1st appointment being the following week. By week 4 I was not feeling better but much, much worse. I felt completely disconnected from reality and began feeling that my child and partner would be better off without me. I had been informed that it takes a few weeks for antidepressants to take effect and that engaging in counselling can cause one to feel worse before feeling better and kept tryinging to rationalise this way whilst also feeling terrified I was loosing my mind. Fortunately, the counsellor I saw was excellent and explained that he would write to GP as concerned I could be having a reaction to the antidepressant prescribed. I forced myself to go out with friends that night, but did not feel connected to them or the environment at all. I struggled to sleep due to itching allover my body and the next morning awoke to severe swelling of the face and could not open my eyes. My partner took the day off work to look after our baby and I went to the GP who stopped the medication immediately and prescribed Piriton. The next 24 hrs I had the most unbelievable headache and remember being laid alone in my room thinking I was going to die and quite frankly not being bothered whether I did or not.
What stopped me comitting suicide at this time was seeing a documentary on television whereby a young man was talking about his battle with depression. Apparantly his Mother had commited suicide when he was 7 yrs old and although he at times felt life was not worth living, he would not comit suicide as he knew the devastating effect this had on others left behind. He said that although he recognised the debilitating effect depression could have on someones functioning he would rather have a depressed Mother than no Mother at all. I wish I could remember what programme this was …I do hope that lad has gone on to do OK. I also remember another drama on T.V around this time about a young woman feeling she was becoming ever more crazy and suicidal after being prescribed seroxat ….I can’t remember what that was either, but I’m sure the name David Healey cropped up around that time as well …it’s all a bit of a fog. I spent a lot of time lolling around watching T.V using what little energy I had looking after my son at this time.
I carried on seeing the counsellor ( about 10 sessions in all) and was very reluctant to try an alternative anti depressant. Fortunately, having seen my swollen face etc the GP understood completely. What I did do is take St Johns Wort, Evening Primrose Oil, took up Yoga and packed in my career to take up part-time work …. a little skint but more energy to devote to family. I went onto have another child and did not experience PND second time.
More recently, I have started to recognise the signs that depression is creeping back again. I’m going through divorce after 18 yrs together. Trying to stay positive but struggling to find the wherewithall to get on with what I need to get on with, feeling exhausted … could sleep round the clock and still feel tired.
I have a different GP now, but she has also been lovely. Its flashed up on my records severe reaction to SSRI’s. She has prescribed a low dose of Amitriptiline and I am at present thinking whether to risk it or not?? Anyway, only I can make that decision. I am lucky that the professionals I have had contact with have been great. I can’t help wondering though what the heck would have happened if I had not developed visible physical signs of adverse reaction to medication. Would I have been seen to have been getting worse? would I have been sectioned? even I was starting to wonder. Even though I am struggling a bit now I do not have that disconnected from reality feeling which was not there prior to taking medication and stopped soon after taking ….. worryingly I can understand someone taking there own life if experiencing that though …. and thats frightening.
Like I said before, I’m sure I’ve come across your name before David but I was unwell at the time. If you are the same person and were behind the T.V programmes I saw 2000/01 then you are a lifesaver. Regardless, I wish you all the very best with your ongoing campaign.
This is a copy/paste of a comment I posted at the entry on pharma and cars. I think it is also appropriate to post it here.
First of all I apologize for posting anonymously. The email provided is real so I can be contacted there.
I am relatively new to the anti psychiatry movement. As most people, I went through life assuming everything the pharmaceutical companies said was true because prominent psychiatrists prescribed their drugs. As it so happened, I was forcibly put into a heavy regime of antidepressants to treat OCD (how that happen is a story by itself, but I’ll keep it out for the moment). For those who are unaware, in the case of OCD treatment, antidepressants are prescribed at very high doses (2-3 times what would be normal to treat depression). I was also given anxiolytic lorazepam and antipsychotic Zyprexa (olanzapine); in the words of the psychiatrists that treated me “to increase the effect of the SSRI”. I was medicated for ~ 1 year before I decided to get out of the drugs. These drugs did nothing to improve my condition. It was my will that made me get better of OCD. I am still doing CBT therapy. What these drugs did was to cause a severe series of side effects I am still trying to recover from. In my case, it was all physiological: kidney failure, liver failure, weight gain an high cholesterol? How do I know? Because I had comprehensive blood tests performed before I was put into drugs; without changing my lifestyle, all these bad things began to show up. If that weren’t enough, I experienced severe withdrawal effects (again all physiological) when I got off the drugs.
I have a doctoral education in a scientific field from a top notch university (it shows in the top 20 of this ranking http://www.shanghairanking.com/ARWU2011.html ). In my scientific field, a theory (chemical imbalance of mental disorders) with such a poor record of explaining cause-effect and with such dismal record of unwanted effects would have been discredited long ago; the promoters of the idea would have been expelled from the ranks as well. How is that this is going on in psychiatry? It escapes my understanding.
The funny thing is that I came up with a similar metaphor to the one presented here to explain what I mean to non scientists. I said, suppose one is in the business of designing planes. One would expect that the plane designers would design planes that fly in 100 % of the cases (as it is the case) with the sole unproved assumption that the laws of physics don’t change. Who in his/her right mind would like to take a plane whose designer tells you that there is no better probability than chance that the plane flies? Nobody. How is that then that people are so willing to take antidepressants when the data shows that they are no better than placebos for most people (meta study by Irving Kirsch)?
Oh, and so you know, the antidepressant I was prescribed is the SSRI sertraline, on which Dr Healy has done a superb job exposing the corruption of those promoting it.
As conclusion all I can say is that I am appalled at the corruption that I have found.
i have been on seroxat for far too long.
the first time was in 1997 for anxiety, age 19. I was on it for 18 months and was advised by my doctor to cut the pill in half , then take it every other day, etc. i had 6 weeks of head zaps and generally feeling unwell but manage to get off of seroxat.
In October 1999 – i had severe depression – looking back i think that this was because i weaned to quick 18 months before.
I was put back on seroxat and have been on it ever since.
I didnt feel depressed anymore, but my appetite and weight went through the roof, i would get agitated very easily, sleep four hours in the afternoon, suffered from migraines and get dizzy and tired when out shopping!
In 2007 – i wanted to try and come off of seroxat – so i went from 20mg to 15mg. within three weeks i was having head zaps and bad thoughts so i went back up to 20mg – thinking that i would need to be on it forever.
I didnt realise at the time but almost ten years later – seroxat stopped working. I developed chronic health anxiety – which i wouldnt wish on anyone. i didnt realise what was happening to me – i had never suffered with this in the past. it is a miserable existence.
last year by chance i came across paxil progress (paxil is the american name for seroxat) who advise the 10% taper every 3-6 weeks. So since july i have been tapering off of seroxat. doing it by using liquid i am managing to wean off of this junk slowly with getting no bad withdrawal symptoms – like the dreaded head zaps.
I am currently on 7.6mg – and i am looking at next march when i get off of seroxat. a total of 19 months in total. that fine by me – nice and slow with minimal withdrawal.
i promise myself this – no matter how anxious i get when i come off of this drug – i am NEVER taking another anti depressant.
Firstly , my comment is on the fact that , having suffered myself with psychiatry 12 years ago , and also seen suffering with my own eyes of others on medications for the last 5years , it confounds me that , the anti-psychiatry movement are not pulling together to create a mass movement immediately and effectively simply because there is “Ego” values involved in the mix , it is only in antagonism that diverse reactions occur , some obviously unpleasant , but seemingly necessary to evoke change. I have no doubt whatsoever that these so called “medicines” have an adverse psychological reaction on most , if not all , whom are placed on them to a suicidal degree . The variable degrees of reaction are a mysterious and delicate subject as it is a natural body trauma when placed on a medication like this , very similar to having any intrusion , the body simply reacts to the substance like any invader . The “medicine” is completely unnatural and incompatible to the immune system , and so this is an ineffective “remedy” to the problem of mind disturbances . The evidence mounting up against the withdrawal symptoms are both silenced and hidden from mainstream society , and it is horrific the overall scale of addiction to prescriptive medicines are unknown . If anything is going to alter the natural balance and collective “Psyche” on this planet it is going to be mankind’s attempt to silence and medicate those whom are not conforming to the man-made system , it is ironic they would rather prescribe medications to us creative human beings , whom have ability to rationalize and ponder in thought the consequences , have never inflicted similar on the animal kingdom as it seems to be confined to the “human condition” , they would rather do this than offer love and empathic alternative treatments , which I can testify do work , admittedly the alternatives are much more tedious and slow to begin with , but long term have much more advantage over a lifetime on medications . I am at present completely against these types of medications knowing first hand the suicidal risks and how severe the body reaction is when confronted within , and also the path to recovery without them . I am indifferent right now as to the overall effectiveness of Electro Convuslive Therapy , having witnessed a loved one be administered this as a last resort , it could be that this had some part to play in altering the dynamics somehow of a very sad and tragic set of circumstances surrounded by over-prescribing these medications , and this individual having endured the traumatic and turbulent mindset of suicide and desire to end the cycle of suffering , it could be said that , maybe , just maybe , the ECT gave respite to this loved one from the unending effects of the medications in his system , but the medications were increased as was the level of suffering and dependency , so in my opinion , the whole thing only serves to seal the impending doom and severity of an ending lifetime addicted to medications and the side effects are now starting to become more pronounced . I can only watch in horror , knowing that the fate of this loved one is sealed and could mean death not knowing that one can and must become free from this wicked system of treatment . It is with gratitude that I am humbled to know that my own life has been saved and that I am free from these medications and assured that it is NOT the answer .
Andrea, I can only speak for myself, but the reason I am not engaged in large scale advocacy efforts is because of the stigma associated to what happened to me. I don’t want my name to be associated to that when you do a Google search. Psychiatrists, especially those unlike Dr Healy, have been very successful at abusing a segment of society which is large enough so that they justify psychiatry’s own existence but small enough that doesn’t create a critical mass that would demand psychiatry to correct its course. Now, all that could change if the scam pharmacopsychiatry is gains track in the media because drugs such as antidepressants are widely prescribed and there is not as much stigma associated with its use as there is with being labeled schizophrenic or bipolar.
There is also the very unfortunate fact that for many decades, the main antipsychiatry movement was http://www.cchr.org , which raised many of the good points that other antipsychiatry movements are raising now but its association with the church of Scientology tainted the whole effort. This guilty by association is unfair, but that’s basically what happened. I feel that antipsychiatry movements such as http://www.mindfreedom.org/ have been just playing catch up with http://www.cchr.org . http://www.cchr.org were the first to oppose Prozac in the early 90s, well before its lack of efficacy and its pernicious effects were known. They were largely ignored by the mainstream. Whether once/if pharmacopsychiatry is exposed for once and for all, psychiatry will be able to move to its next scam -as it was able to do with cocaine, ECT, lobotomy and insuline treatments- is an open question.
This is an example that shows CCHR ahead of the curve,
http://www.cchr.org/sites/default/files/Exposing_the_Dangers_of_Antidepressants_Despite_Cover-Ups.pdf
I am just a little bit surprised that your position is cautiously pro anti-ds rather than totally negative about them.
Anti-ds muck about with serotonin, which is a highly dangerous game, as you know.
We have several high profile cases where it is obvious the drug caused the death.
Giving folk a placebo may ease their difficulties in the short term. Short term being the operative word.
Problems are surmountable, given time.
The problem here is that people are not given time to adjust to life’s problem. Before you know it, a pill is thrust at them and most people respond to the placebo, but just a few slip through the net.
I think really that you should get off the fence.
From what I have gleaned from all your blogs is that some anti-ds can cause suicide and or/violence, but in a very small minority.
I think, in a way, that you believe in placebos helping out the majority, but I actually think it is wrong that you think that.
I think you are a wonderful person because you have kick started this whole debacle from Panorama until today. But, I also think that you, too, have been caught in defending it for the majority.
The minority, and it is very small, don’t have a leg to stand on regarding evidence that ssri’s cause violence and suicide.
You know they do, I know they do, but we all know it’s a con regarding a chemical imbalance affecting serotonin levels and I think it is time you came off the fence and go one way or the other.
Hints in the article in the Daily Mail tend to look ‘maverick’ without a patient story to back up what you are saying.
I wish I could have backed up your article with my story of attempted suicide from an ssri and the colossal mental abuse which I received from my medical surgery and from the hospital which initiated the initial prescription.
I think you should, perhaps, concentrate a little more on a marketing plan and not put out articles which, without a victim’s input, appear meaningless and just a little irresponsible.
I contacted you over a year ago with my story and you said you weren’t interested. But to be perfectly honest, you should have been interested, because I am one of a handful worldwide who stared at that noose and did not put my head in it.
I have a pretty good legal case not only to the manufacturers of the initial drug but also with my surgery who allowed it all to happen.
So, here I am. A perfect and prime example of drug induced suicide plus clinicians abuse.
One day, I shall go the whole nine yards with the media, but not yet.
Got to get some tactics and strategy first. Your words.
I write this as a 60 year old lady, retired marketing director. Not daft.
Sorry to be just a little bit critical, but I am a little older and just a little bit wiser than you, having gone through the hoop with all this.
Don’t think for one minute I am not a thousand percent grateful to you. Without your input all would be lost. But I really don’t think your marketing strategy is as good as it should be.
I have been doing a lot of research into SSRIs etc since my 22 year old son had what turned into a major incident. end of Oct 2012 – He was depressed. went to doctor. After being on Sertraline for a week he started punching the walls ’til his knuckles bled (for 15 minutes at a time), slashing his wrists, acting strangely. He was put on Lorazepam to sedate him, and then after a week saw psychiatrist (for the first time) who prescribed mirtazipine to replace the lorazepam – to help calm his agitation. The mirtazipine caused his face to swell. I reported this to the doctor as it said in the patient leaflet that this was a major side effect. It also turned him into a total zombie. Doctor took him off that put him on Trazadone to calm him at night. On next visit to psychiatrist my son said he didn’t feel Sertraline was helping. The psychiatrist told him to come off Trazodone straight away and gradually off Sertraline He had been on 150 mg a day, so he was to reduce to 50 mg a day for a week and then have three clear days before being put on Venlafaxine. All the above took place over a month and a half. On my son’s last day on Setraline (50mg) he told me he felt unsafe and that he needed to go to hospital or he would be dead by morning. He had asked to be admitted to hospital before throughout this time, but the medical people involved kept dissuading him, and on this occasion it was no different, when I rang them to say what he had told me they said ‘no, he doesn’t want to go to hospital, but we will come and assess him anyway’ When they arrived as they talked to him he kept losing consciousness and I ran up stairs to find empty paracetamol packets. He had taken sleeping pills and paracetamol. Ambulance was called and taken to hospital where he was kept in but only because he had to go on a drip for two days to antidote the paracetamol. I say ‘only’ because before we knew he needed the drip he was assessed by psych team but they had no beds available.
Since then (one month over xmas) he felt much better and stayed off all meds, as I emphasised to psychiatrist the dangers, so psychiatrist held off the Venlafaxine. but at last visit to psychiatrist my son said he was feeling a bit down again and the psychiatrist prescribed him 300mg of Quetaipine a day to help him sleep. it was going to be Venlafaxine AND Quetiapine but she held off the Venlafaxine when I told her that I felt it should not be used due to previous experience with Sertraline.
He is still on the waiting list for CBT. I wish they were as hot to dish out the proper psychological help as they are to dish out potentially dangerous symptom supressor like SSRISs.
I am soooo angry over all this. I was basically made the ‘responsible person/carer’, told to be the one who dished out the medication. Watched as my son went through multiple horrible drug reactions etc.
It was only after his overdose and my research which included reading David Healey’s work that I put two and two together and saw that his behaviour had become SOOOO much worse AFTER he started on the medication that was supposed to HELP!
He has not taken the Quetiapine. I have put him on ST Johns Wort and various nutritional supplements and he is starting counselling in a couple of days. Talking to people I know in my immeadiate circle has uncovered multiple suicides and attempted suicides of people they have directly known on these sorts of drugs. So I can only conclude the adverse reactions are in fact A WHOLE LOT higher than the official reports.
Thank god, my son has had me as an advocate and person to do research. When you are ill and vulnerable you are often not in a position to watch your own back and it makes me sooo angry that vulnerable people are given this EVIL stuff by trusted family doctors. I know EVIL is an extreme word and I do not use it lightly, in fact I hardly ever use that word, but feel it fits in this situation.
What I would like to know is how do I report an adverse reaction of this sort to drug company – I’m sure that none of the medical people involved have reported it.