Personal Experiences Reported to Ann Tracy, PhD.
A FEW FIRST HAND PERSONAL EXPERIENCES:
1. To make an excruciatingly long story tolerably short, I was given Prozac for Chronic Fatigue syndrome by my GP. I was on it for a year with no major problems, in fact I quite liked the unsought-for increase in confidence, sociability, etc. After stopping, I began experiencing a whole host of 'mental problems' that I'd never had before. This began as a strange and almost indescribable difference in perception; it was as if I saw things without any emotional response. Even the simple, everyday things -- looking at a tree, a dog, being in a roomful of people listening to conversation - took on a bizarre, otherworldly aspect. It was as if I were on some kind of anesthetic while still awake. This escalated over a period of several months until it took on the form of full-blown depersonalization disorder. At the same time, I began experiencing episodes of derealization and extreme LSD-like experiences, a constant experience of mental impairment, severe loss of short-term memory, a feeling that part of my he'd never heard of such a thing and referred me to a psychiatrist, who proceeded to tell me that this wasn't caused by the drug, but that my 'illness' had gotten worse. 'What illness,' quoth I. 'Your depression,' quoth he. When I told him that never had depression, just fatigue and food allergies, and I'd certainly never had any of these extreme forms of mental illness before or anything remotely like them, he looked at me blankly for a minute, and then somehow convinced me that they had just 'happened,' that my condition had just coincidentally deteriorated, that I'd always 'really been depressed' and just hadn't known it, and that what I needed to do to make these things go away was to go back on the drug. I was in desperate straights, scared out of my wits and appeared to have no other options. I did as he said, re-started Prozac. All the symptoms immediately got worse. I was having constant, unremitting LSD-like experiences, horrible, nauseatingly violent dreams, a constant state of unremitting depersonalization and derealization to the point where I could barely function. It was, by far, the most terrifying experience of my life; I literally felt like I was losing my mind, being taken over by an alien force.
I went to several other psychiatrists to try to find an 'expert' who could explain all of this. Dr. Daniel Aurbach (quoted in a recent story in Newsweek as a Prozac authority) told me that he'd never heard of Prozac causing any of these phenomena, that I should not worry, it was 'a very safe drug.' Dr. Deborah Nadel of UCLA told me that she'd 'bet money' that this had nothing to do with Prozac, that I should increase the dose, and that I needed to take Klonopin for my 'anxiety,' and go into therapy, which I did for several weeks. Eventually, I could no longer bear the asininity of sitting in a room talking to this woman about my childhood while tripping my brains out on a drug, hallucinating and having out-of-the-body experiences, nauseatingly violent dreams (when I was even able to sleep) and not being able to remember what I did yesterday. I expressed my concerns to Dr. Nadel about the approach we were taking; she told me that I should take a neuroleptic (anti-psychotic medication). To my eternal credit, I did not throw her out the window, but, patient guy that I am, went to a few more shrinks. They all told me basically the same things:
Prozac doesn't do this, you must have 'already' been mentally disturbed (or this just 'happened,' nothing to do with the drug), all reports of adverse effects from Prozac were started by the Scientologists, why don't you try a neuroleptic, they're safe in small doses, etc. etc. etc. One morning, after waking up in sheer terror from a particularly horrible dream in which men in masks were ripping first the eye-balls and then the brains out of two young girls, I went into the bathroom and sat on the toilet, letting the water in the sink run to give me something other than my mind to listen to. 'Jesus,' I thought, 'what the *hell* could a dream like that possibly mean? What is happening to me?' 'It doesn't matter,' said a clear, calm voice in my mind, 'because I'm going to kill myself.'
In that moment, I realized that I didn't give a rat's ass what any psychiatrist said. I was stopping this shit no matter what. I'd walked into this with a mild case of fatigue and some food allergies, and now I'm sitting here on the edge of psychosis with a voice telling me to off myself. I don't think so.
I went to a doctor I'd seen several years before, Dr. Murray Susser, one of the foremost authorities on the treatment of Chronic Fatigue Syndrome and related disorders. I knew that he had prescribed anti-depressant medications (I'd read his book), and I also knew him to be a knowledgeable, widely educated, intelligent and decent man. I told him my story. When I got to the part about everybody telling me that it 'couldn't be the drug,' he looked up from his notes and said "Bullshit! It's the drug. I see this kind of thing all the time. I don't know how these psychiatrists can be in such denial, the literature is full of reactions like this." We talked for a long time, figuring out a workable program for safely tapering off the drug, and for trying to get myself back in shape afterward. I left his office feeling hope for the first time in eight months.
Happily, right at that time, I found the book 'Prozac: Panacea or Pandora?' by Ann Blake Tracy, which I promptly read. It was like the light at the end of the tunnel; this book described everything that had happened to me in great detail, gave scientific reasons why it happened, backed it all up with solid research, included testimonials from hundreds of others in the same situation, and even gave me some insight as to how seven of the top psychiatrists in L.A. could be so amazingly, criminally inept.
I thought about suing them. For about thirty seconds. How could I prove what this stuff has done to me? For me, the most frightening aspect of this whole adventure, even more so than journeying to the brink of insanity, is the realization that these psychiatrists have all this power and authority to proclaim what is and isn't real as regards your own mental function and sense of self, whether they have any real idea what they're talking about or not. [I've learned that] SSRI's can, in fact, cause LSD-like experiences, due to their artificial raising of 5HT (the chemical that LSD achieves its effect by mimicking). However, it's not 'fun, trippy acid' kind of stuff. It's more like LSD mixed with PCP mixed with anaesthesia, mixed with Sulfur from the Pits of Hell, and like the energizer bunny, it keeps going and going and going...
As for depersonalization disorder (something the docs all told me Prozac couldn't be the cause of): it's listed right on the package insert as a possible side-effect. Too bad none of these guys thought it worth-while to give to me. Or read.....I like to learn from my experiences. In searching for positive aspects to this whole thing, I can say I now have at least some idea what schizophrenia might be like. For whatever that's worth...
2. Thanks for your e-mail on 5-31-95. I ordered your book and read it. The book was a real eye opener, and it perfectly described my own descent into hell from 1989 to 1994 due to meds (in particular Prozac). Initially, I was put on Prozac in Oct.1988 due to clinical depression. I was definitely depressed at the time and responded fairly well to the Prozac at first. Prior to Prozac, I had urges to hurt myself, but never really did. By January 1989, I was cutting myself up with everything I could find. This all consuming hurting binge resulted in frequent trips to ER, hospitalizations, etc. The thoughts would not stop and I would prowl around the house for hours looking for just the "right" thing to hurt myself with. I spent one whole year with my hemoglobin around 6-7 (my usual is 14) because of blood loss. Once I almost died. The frightening part is my psychiatrist just kept upping the Prozac, finally to 80mg and then added Anafranil, Melleril, Tregretol, Klonipin, on and on. I wish I could fully describe this nightmare. I was labeled Borderline--Psychotic---OCD---Bi-polar. I was convinced by the doc that I was crazy and it was just taking time to find the right meds. NO ONE questioned that maybe the meds were the problem. As for me questioning it, I did and was told "no way."
And I guess when someone is doing such bizarre stuff they start believing they are crazy, especially since I was so driven to do this stuff. Once I had a idea in my head, I had to do it. I have scars and skin grafts where I injected Drano into my body and skin grafts where I burned my hand to the bone with cigarettes. I was afraid I would hurt my kids...I had urges to shoot them with our rifle (we disposed of the rifle real quick) and I was afraid for them to come in the kitchen for fear I'd stab them. Your book brought back this nightmare. I just kept thinking as I read it "Oh, my God!"
In January 1994, my doc added Cytomel to boost the Prozac (and everything else I was on.) Then he added the Fastin and Pondimum (diet pills) because I had gained 50 pounds in a year (no wonder). Then I really did flip out. Think my brain finally said "enough is enough." So the new doc took me off everything, slowly added low doses of Depokote and that was 14 months ago. I have been fine. No obsessive thoughts, no urges to hurt myself, no urges to kill my kids....I'm just about as "normal" as normal can be. I have a very successful private practice as a Licensed Professional Counselor.
Ann, after reading your book, I felt relieved to realize my "crazy" episode has little chance of returning since I'm convinced the reaction was med related. On the other hand, I feel really angry that my family and I went through hell for five years possibly due to medication. I also feel a little stupid since I'm in the mental health field and maybe should have caught on faster to the problem (I was to busy reading up on the DSM-III-R to check out each new diagnosis they gave me.) Not too long ago I tried to find an attorney who would help me recover the financial costs from that last hospitalization, because that I KNEW was not me, but rather mismanagement of meds and too many meds from the doc. But after I talked to three, I quit. Seems they are a little reluctant to take psych cases. But how do I live with the fact drugs took away five years of my life??? How do I explain this "Miraculous" recovery from obsessive thoughts of hurting, killing, etc.?? I don't think someone comes out of that kind of 5 year hell, and be instantly cured by a low dose of depokote. You did me a real favor.....a giant boost to my self-esteem.
So...you've heard my story...I realize probably just one in hundreds. Sorry this is so long. Sort of felt good to tell my story at last to someone other than a doc who will "label" me.
Thanks!! I will recommend your book to any clients I have who are on SSRI's.
3. After 2-1/2 years of severe long-term overwork, I passed out at work one day in late Fall 1993. My doctor ran tests on me and determined that I was not ill in any way, I was simply suffering from stress and overwork. I began seeing an MFCC, who in March advised that my doctor prescribe Klonopin for anxiety. I was started out at 1.5 mg per day. Despite specifically asking about side effects etc, my doctor failed to inform me either that it was addictive, or that it would interfere with my memory and attention span. I would never have gone on it if I had known. Those effects, of course, impaired my ability to do my job and made things worse instead of better.
Over the next four months, as my condition deteriorated, the dosage was increased, I deteriorated faster, and so on until I suffered a total breakdown in mid-July, by which time I was on 3.5 mg per day. At or about this time, my therapist suggested I should go on Paxil. I declined, insisting I wasn't depressed, I was exhausted and over stressed. A week or two later she tried a different tack, and persuaded me to try it by telling me it would give me more energy. I was so utterly drained and exhausted that I was willing to try anything. The initial dosage was 20mg per day. The Klonopin dosage was maintained.
I felt even more lethargic on Paxil, and stopped taking it after a week. My therapist told me that I hadn't given it time to start working, and persuaded me to go back on. I began to experience personality changes, and became withdrawn and verbally aggressive. At the beginning of September, I suffered my first severe dissociative episode. I took a 10-mile late-night stroll across the Santa Clara Valley, barefoot, wearing only cotton slacks and a T-shirt. After apparently walking several miles up the middle of US 101, I eventually wandered into a hotel lobby in Milpitas, where I collapsed from exposure. The hotel called paramedics, who took me to hospital, where I was sedated, treated for hypothermia, and discharged.
My therapist, in response to this, doubled my dosage to 40mg. On the higher dosage I began to display severe personality changes, and began to suffer acute paranoia, uncontrollable mood swings, severe agitation and akithisia, intermittent hysteria, asthenia, continuous tremors, and frequent agonizing "ice-pick" headaches (my former wife's term). I began to spend more and more of my time in dissociated, depersonalized states, and had great difficulty sleeping. When I finally did get to sleep, it took me hours to muster the strength to get out of bed when I woke up. I moved into a separate room from my wife. After some rather alarming behavior on my part, we agreed to remove all of our firearms from the house and leave them with a friend for safe keeping, and we also agreed that I would not know which friend. (I was still rational some of the time.)
My mood swings continued to become more rapid, more erratic, more powerful, and more uncontrollable. I was aware at some level inside that I was on a roller-coaster ride through Hell that I didn't have any desire to be on, but I didn't seem able to communicate that fact or do anything to try to escape it. I also didn't yet know that it was the drugs doing it. In mid-October I suffered a catatonic episode that lasted about eight hours; I was unable to speak for about three or four days afterward. I am sure the physiological equipment worked, but there seemed to be some kind of psychological wall in my mind, and I couldn't get any words past it. I had to communicate by hand signs and written notes.
My therapist's response was to conclude that I had spontaneously developed bipolar disorder. She called in a psychiatrist from Walnut Creek, who - on the basis of a 20-minute interview with me and 20 minutes with my wife - decided that she was right, and prescribed Depakote IN ADDITION to all the other medications. I don't remember the dosage. I spent the next three weeks in a kind of haze; I can remember almost nothing about it. The mood swings didn't stop, but now I was kind of disconnected from them. Disconnected from pretty much everything, as a matter of fact. I think if anything, things were still getting worse, only now I didn't seem to care, because it wasn't happening to me, it was happening to some nebulous other person who lived in my body.
On November 11, some time in the early hours of the morning, I took a massive overdose of everything I had on hand at the time, which was around 30 tablets of Depakote, 60 of Paxil, and close to 100 Klonopin. I also made several cuts in my left arm with a Samurai sword. Alerted by our cats, my wife found me and took me to O'Connor Hospital, where I was detoxed and confined for California's mandatory 72-hour hold after any apparent suicide attempt. I was then transferred to the inpatient therapeutic community at Good Samaritan Hospital. I was given no medications at all for the first week or so, except for a sleeping pill (Dalmane, I think) after I was unable to sleep for the first 3 consecutive nights and was experiencing severe symptoms of sleep deprivation. After about a week, the consulting psychiatrist in charge of my treatment recommended I resume a low dosage of Klonopin. I did so, but at this time I was beginning to finally find out some substantive information about the drugs I had been on, and at Thanksgiving I discontinued the Klonopin altogether. I was transferred to the outpatient program around the beginning of December, and discharged altogether on December 15. My behavior was still frequently irrational, and apparently emotionally abusive, though I was mostly unaware that I was acting irrationally. My wife and I sought marital counselling in January, in April, we separated, and my wife asked me to move out. I remained living in a separate room until I was able to move out of the house in July.
In the intervening 19 months, I have avoided any medications at all, except for the past few months. About two months ago I came down with a bad cold, in treatment for which I used a cough syrup and a nasal decongestant (generic Sudafed). I experienced an overdose-like reaction to the Sudafed, and immediately stopped using both the sudafed and the cough syrup. I still experience occasional tremors, occasional brief anxiety attacks, brief attacks of akithisia, and difficulty sleeping. My circadian clock appears to be completely out of whack. My memory is very unreliable, though slowly improving. It seems that most of the actual information is still there, but many of the pointers are hopelessly scrambled, making me unable to get at the memories. I have a lot of trouble with what I call "dyslexic fingers" - my typing has slowed down considerably, because I make large numbers of errors in which my fingers type all the right letters, but in the wrong order, and occasionally I look at the screen to find I've typed complete gibberish and have no idea how I managed to do it. (I catch and correct almost all of my errors, but I never used to make those kinds of errors at all.) My co-ordination does not seem to be affected otherwise. I also still suffer from occasional (though thankfully, less frequent) flashbacks, which can still reduce me more or less instantly to complete hysteria. I am being treated (by a DIFFERENT therapist) for post traumatic stress disorder, though we seem to have made comparatively little, if any, progress lately. I have an agreement with both my new doctor and my new therapist that any kind of medication is out of the question.
Well, that's the history, to date. (And I'm feeling proud of myself, because for once I managed to tell the whole story without getting hysterical.)
4. Husbands decent into Prozac Hell.
To: drugaware@usa.net
I would like to get this story on your web page. I have been in contact with Dr. Tracy and read her book. After reading her book I credit her because if I hadn't read it my husband would not be alive today. I have talked to her by phone and by e-mail. Thanks to her I have appeared on the Geraldo Show. I did the best I could to bring this story to light even though Dr. Rappaport (who appeared on the same show to explain OCD and praise the drugs that help) put us off as not really being right for this show. I would like to go on Dateline, Montel Williams and Oprah to get this horror out in the open. Here is my story and what happened to us in the past 2 years:
In December of 1995 our house burned down. For the next 4 months we fought with the town to get it rebuilt (it was a 2 family owned by 2 families and lived in by both families). The Zoning laws changed and the town would not let us rebuild it as a 2 family home. So we had to buy out the other owner. Then we fought with the insurance company to get the money needed to rebuild our home.
It was a very stressful time in our lives, we were living in a trailer on our property during all this. It was hard but we were doing alright and helping our kids get through. In April of '96 my husband went to his Primary Care Doctor for a refill of his Blood Pressure Medication. While he was there his doctor asked, "How are you doing?" My husband said "..a little depressed." The Doctor said "I have just the thing for you." My husband came home with free samples of prozac and a prescription for more. I looked at him and said that people kill people and go nuts on that stuff, and laughed it off. Little did I know what life would be like in about 4 months.
In August of '96, I started seeing a change in my husband of 20 years. He was the type of person who liked to work in his yard and home and keep everything neat and manicured. Well I kept finding him in front of the TV just staring at it. I would be yelling at one of the children about something and I would get no reaction at all from him. By September there were other signs, like not sleeping at night, not eating, which I didn't realize at the time but looking back now I can see them.
On Oct. 4, 1996, I got a call from work. He had passed out and went to the hospital by ambulance. When I got to the hospital they told me they were keeping him there overnight for observation. Well I picked him up the next day and he was in total confusion, having anxiety and panic attacks, and admitted he had been having severe nightmares about dying over the past weeks. He went out for a walk the 3rd day after he came home my brother found him walking on a busy street in a total daze. He couldn't remember where he had walked. Over the next few weeks he went down hill quickly. He tried to return to work but he couldn't focus--he would just get up and leave, not telling anyone where he was going. I kept calling his doctor for help telling him there was something wrong. The doctor kept adding more and more drugs. Klonopin, Buspar, and more.
He became zombie like. He couldn't function at all. Finally we took him off all meds except for the prozac. In the next months he stared consuming large amounts of alcohol. He started suicide tries, (walking in the middle of a busy road, walking on railroad tracks waiting for the train to run him down, slitting his wrists, electrocuting himself and overdosing on the prescription drugs, and also mixing that with alcohol.
By this time he complained of electric shocks running through his body and rapid heartbeat. He just wanted to die. All this from a man who loved me and his family. He was a really nice person and we enjoyed each others company and had a good life with the kids. We were looking forward to moving into the new house and having it all to ourselves.
The Doctor at this point sent him to a neurologist who did a complete work up and ordered a MRI. He found nothing and told him to up his prozac to 40 mgs. Finally I convinced him to go to a psychiatrist. Of course, you have to use a Doctor that belongs to your insurance group, and there wasn't a Psychiatrist in our area at this time. So he ended up at a psychologist. Well he went to this Doctor and tried to explain what was wrong and that he thought it might be the prozac. But the psychologist just said '..oh no--no prozac doesn't do that!' and gave him a relaxation tape that taught him to squeeze his butt cheeks as one of the exercises. He also told us to contact our primary care physician and add Xanax and something else.
That ended going back to him for treatment. By this time my husband was totally out of control he was starting to see a girl after work, leaving work to meet her, leaving home to meet her, and still trying suicide attempts. He would look fine one minute and the next his eyes would glaze over and his pupils would start flicking back and forth and he would start having these little seizures. I am still calling the doctor asking him what I should do. Finally he said "I have to get off this prozac or I am going to die." Well by the beginning of January he was having an affair with this woman. Still not sleeping at night, he would spend all night sitting in a chair staring into space and then go to work in the morning. By January he was totally manic. I was terrified of him and for him. Finally I had to call the cops and have him committed to the Psych Ward at the hospital.
Around this time his sister had done some internet research on prozac and came up with some excerpts from Dr. Tracy's book. We showed them to the hospital psychiatrist who said 'oh no--no Prozac doesn't do that.' So the hospital psychiatrist too added new drugs: Effexor (SSRI anti-depressant), Serentil (anti-psychotic) and Anafranil (anti-obsessive). He came home 4 days later and had to go to day classes at the hospital for suicide and depression for 2 weeks. He took off after being out of hospital 10 days and tried to kill himself again. Back to the Psych ward. This time he's there for 11 days. All meds are upped. He comes home like a zombie again. No more anxiety or panic attacks but still has the sensation of electric shocks, and now he has these body seizures where he jumps and swing his arms in his sleep. He is screaming out in his sleep, sweating. Still unable to work or focus. Well this continued on all Spring and Summer. By now he was seeing a psychiatrist (insurance company finally had one in our area). The Doctor kept upping the meds. Adding meds and changing meds. By August he was a basket case crying about what he had done to his family and that he just couldn't go on after what he'd done.
August 31, 1997 I wake up at 3:00 am and he's gone. I find him in his car with a hose from his tailpipe to his car window. The pain is too much he says. Back to the hospital. New Meds Pamelor (anti-depressant) is added, Effexor is stopped, Melaril (an anti psychotic) is added, and Serentil is stopped. By this time he is on the maximum dosage allowed for Anafranil. He comes home a Zombie again. No work for a month. Well I finally decide to order Dr. Tracy's book. As I was reading it, it was describing my husband and his ordeal to a "T." Other people on Prozac and other SSRI anti-depressants were going through the same exact adverse reactions. It made me cry to think that the Doctors for the last 1 1/2 years were killing my husband with these drugs. They turned a normal human being into a manic depressive, psychotic, basket case who almost destroyed his family and himself. On October 31 he took himself off all meds. He went through horrific withdrawals: pain, crying spells, rebound depression. He wanted to just lay down and sleep forever. Finally about 3 weeks later I saw a change. I saw my old husband starting to return. He had energy, he was happy, all suicidal thoughts were out of his head. He couldn't believe that he had tried to kill himself.
It has now been four months off meds and he is working full time again. He is talking to people at work about the dangers of these drugs. We have been on the Geraldo show. We have also read a story in the paper where a gentle kind man killed his wife after a few months on Prozac. Also a friend of a friend where he works just committed suicide on Prozac. We need to let the people know what is going on with these drugs before more lives are destroyed.
Thanks for reading my story,
Patty
Patty and her Husband recently taped an episode of the Geraldo Show. Check our Past Public Appearances page information about when it was broadcast and how to order transcripts.
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These and additional stories are available at http://www.drugawareness.org/survivors.html
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