I am a Prozac Survivor

“I think this experience will haunt me for the rest of my life.”

 

My name is Charly, I am a Dutch man and I live in Amsterdam, The Netherlands. My age is 33 years, now on 8 august 2000. After 4 years I think it’s time now to tell about my Prozac experience that have changed my belief system and my total way of living. I think this experience will haunt me for the rest of my life and I think I’m ready to face that fact now. I’ve tried to “just forget it” in all kinds of ways, but for me it’s like once you’ve been there, there is no return. I have a few good friends who really try to understand me in this feeling, but I also know that’s too much asked from them. I arrived at the place were I really wish to meet and talk to other Prozac/SSRI Survivors and I hope this story will be the start of this.

In February 1994 I visited my family doctor and told him about my depression because of a stranded relationship. Because I had heard and read about the “magnificent new wonder-drug” Prozac and it’s far fewer side effects then other anti-depressants I asked him for a prescription. I didn’t needed any psychotherapy cause I knew very well the background of my depression and it wasn’t that bad. If I had only knew then, what I know now, I wasn’t depressed at all, I was feeling down and I just wanted to feel better, happy, not sad. -later I would find out what a real depression was after Prozac hitting me hard-

My family doctor prescribed me Prozac 20 mg daily. About 5 to 6 times I took a monthly cure of Prozac 20 mg daily with intervals of a few months. My first response on Prozac was pretty good, I became more active, but looking back on that period I also became more reckless and naive, less bright and focused on my environment (people and circumstances). I was completely convinced of the innocence of this product and believed that it could actually help me feeling better. The only side effects that it gave me at first were some flu-like symptoms (like shaky), some nerve twitching beneath my right eye and a dry mouth, nothing very serious. My dream recall increased tremendously and they were more rich and vivid then ever. I’ve ended the last cure of Prozac (30 days) in April 1996.

On Friday 2 august 1996 (about 4 months later) I went to my family doctor for another 30 day prescription of Prozac because I still felt somewhat down the last few months. I took one pill that afternoon and went out of town to pay a visit to my parents. While driving in my car for about a half a hour I suddenly felt a strange kind of dizziness in my head. I felt inconstant contractions to be followed by a very painful stitch at the right side on top of my head, then followed by a feeling as if a bloodstream went down on my forehead.

A milky mist came down upon my eye sight, although I still could see, thank God. From my neck an extremely burning sensation radiated throughout of my whole body, especially my spine, arms and legs. My whole body felt like burning inside. Then a stiffening of my body followed and I had a constant feeling of “electricity pain” in my whole body. My body felt electrified, constantly. It’s very hard to explain this feeling, but it’s like goose-flesh so much intensified that it hurts and keeps your body tensed…constantly ! (-It feels like you don’t have a body anymore, but only “wires” connected to high electricity-)

I drove my car upon the verge and came in a state of shock. I remember that my first thought was: “It’s over, this is a stroke and parts of my body will be paralyzed”. Then I realized that couldn’t be the case cause I could still move my body parts and I could still talk, but inside I was completely panic- stricken. What is happening to me ? My God what if this won’t go away ? “I must keep my head cool, stay calm and drive on” were my thoughts.

I only parked for a few seconds upon that verge to check out if I still could function and drove on in the direction of my parents house. The whole incident, from the start of feeling dizzy, till the drove on to my parents, lasted less then 1 or 2 minutes. It took one Prozac-attack to blew away my comfortable feeling of self, of me in my body ! The milky mist that came down upon my eye sight would stay for days. First thing I did when arriving at my parents house was immediately calling the family doctor who tried to convince me that this was just some side effects I was going through and I should keep on taking the Prozac, which I did not, because in the state I was in, this stuff just had to leave my system, immediately. I’ve contacted 5 other doctors who all said that if this was a Prozac induced side effect at all, it would pass away within a few days. It didn’t. I was so scared, I was so shocked and unknown of what happened to me, and the responding of the doctors knocked me out. Physically and mentally I became a wreck, fractured. All I could do was lay down and trying to sleep.

From that moment on I would stay and move into my parents house for about one year. I couldn’t work anymore, I couldn’t focus anymore, I had changed from a self-confident grown man into an extremely anxious pitiful man, locked up inside, not able to function anymore. I got more then terrified, I couldn’t rationalize anymore, I just couldn’t bring my thoughts to the right proportions, and believe me, you would be terrified too, cause you think you’re going crazy, out of your mind (of course Prozac/SSRI Survivors all know how that’s like). It was very difficult for my parents, but they’ve cared for me as good as possible in that period, not really understanding what happened to me and not able to communicate with me.

The first 14 days I went straight into hell, just pure and plain hell. My body, my nervous system, became extremely oversensitive and totally out of control. It’s difficult to explain but I wasn’t in control anymore but my brains were, sending signals of pain throughout of my whole body. It was the most frightening experience I ever had in my whole life. My body felt as if it was turned inside out. It scared me so much and I had no idea if there was coming any relief of this. I didn’t committed suicide, but I don’t know what I had done if that bit of a relief didn’t came after 14 days. My ego (what you think you are) blew away into pieces. Boundaries that belonged to my personality structure were far exceeded. It’s an intrusion of your integrity that is not easily to describe but I’ll try to explain: I had thoughts and emotions that were not mine (but artificially produced by my brain), thoughts and emotions that didn’t belong to my personality, my character, that which makes me the person I am. Thoughts that were racing in the middle of my fore head like “resonating clouds of gas”.

The thoughts were extremely immoral, offensive, negative and from a self-destructive kind. I was embarrassed by these thoughts and so afraid, not able to stop them. The thoughts were extremely clear and strong, I actually could “hear” the thoughts and it’s very difficult to explain how that’s like, but “resonating clouds of gas” fits the closest description. It’s through this experience that I can better understand now how a phenomenon like telepathy might work.

Next to it I experienced exaggerated feelings of compunction. I condemned myself for “sins” from my childhood, like molesting the cat. The emotions that came up were so horrible with thoughts like: “how do you think to live on with this ?”, again, I just couldn’t rationalize anymore, as responsible as “I” made myself for these “sins”. Also I “saw” in my minds eye (and you have to understand that I saw it so clearly, like in a very vivid dream experience) symbols that scared the shit out of me, spires (like in the dark ages), people with masks, etc., all kind of bizarre and scrappy. I got oversensitive for coffee, herbs, etc.. I was extremely oversensitive for light and sound, which caused me pain upon top of my head, symptoms you can best compare with meningitis. My neck was heavily contracted. I couldn’t watch any movie with more or less contained violence. It scared me, my nervous system just couldn’t bear it.

Nightmares that I experienced were horrible, violent, frightening and so realistic that after awakening it took me some time to realize that I was already awake, and that this was a nightmare, not happening in real-time. That was another symptom: the filter between my sense of reality and my dreams got blurred. I felt like I was in a dream-like state (locked up inside) and couldn’t woke up from it. I still have this symptom occasionally, after 4 years now. In one of the nightmares I was raped by a good friend of mine, it was so horrible. Can you imagine someone very close to you, you really know well, you care for this persons integrity and you have a realistic nightmare being raped by this person. Then you “wake up” from this nightmare not realizing that you are awake already. Sometimes at night I woke up with such pressure on my chest (it literally felt as if someone was pushing on my chest) that I had difficulty with breathing. A lot of nights I even didn’t dare to sleep alone. My heartbeats were heavy and up-speeded along with the excessive sweating of my body, especially at night. I really do not understand why I didn’t drove in panic to the hospital at some nights, but I didn’t. At some nights I didn’t dare to sleep at all, because of the realistic nightmares that gave me a feeling as if something evil did came over me. I was also afraid to wake up being totally paralyzed, and the feeling of this being possible was very strong. It felt like anything could happen, I wasn’t in control anymore.

<“Recovery”> After 14 days I saw a little light at the end of the tunnel. After 40 days the burning “electricity pain” (electrified feeling) in my body had slightly changed in an all embracing itch feeling, which was a blessing compared with the hell of inner nerve pain. The “resonating clouds of gas” thoughts in my head, slightly changed into a feeling of a “stone” in my head. This “stone” is accompanied with contractions in my forehead and radiate behind my nose to my fore teeth.

After 4 years now, the “stone” and the contractions are still returning when I work behind a computer screen (indeed right now). After 4 years I still experience occasionally shivering of my body. After 4 years I still experience a kind of alienation from my emotions and my physical body. It feels like you’ve lost a part of yourself and some un-trustable stranger substitutes that part. I’m just glad that I can live a “normal” life right now. I’m still bitter, who’s gonna give me back what I’ve lost ? The battle I’m still fighting to win, is to win myself back again, and that means:

THE COMPLETE AND TRUSTED FEELING OF MYSELF I ONCE HAD.

I know I’m not alone, I’m just one of many, a Prozac Survivor, a SSRI Survivor. I do wish to meet a lot of others now who are SSRI Survivors. Here in the Netherlands I’ve had a tremendous support by Frank van Meerendonk, the director of the Prozac Survivors Support Group (PSSG) in The Netherlands. Frank van Meerendonk has gathered a lot of information concerning SSRI’s, horrible stories, trials and neuro research. His approach is very down to earth. It’s shocking to know that there are so many people on SSRI’s nowadays in 2000 – about 40.000.000 worldwide on Prozac, not to mention the other SSRI’s- after so many victims crying out to the Food and Drug Administration (FDA). Among those people on SSRI’s are many children. Many children are also on Ritalin and Dexedrine, a Dopamine Reuptake Inhibitor, just like Cocaine or Speed (Amphetamine), and we all know the actions of these drugs very well.

There are NO excuses for these SSRI manufacturers, they just don’t care, they don’t listen, still going on producing copy-cat Prozac-clones, with a cute selling name, but with the SAME diabolical effect, working on the SAME serotonergic and related dopaminergic system in the brain, calling them: Prozac, Sarafem, Paxil, Zoloft, Luvox, Celexa, Anafranil, Redux, Fen- Phen, etc.. In the month of September 1997 the diet-drugs Redux and Fen-Phen had to be withdrawn by the FDA because of their serious life-threatening action’s, damaging the brain, heart and lungs. It’s obvious what is going on here ! It’s so very important to protect the (future) children against these products, these Selective Serotonin Reuptake Inhibitors and the awful arrogance of their suppliers !

I don’t know exactly how to describe this, but I definitely know that SSRI’s influence your conscience and the center of your will. I am talking by first hand experience, and after this experience it’s so very difficult to gain control back over your life again. It’s so hard to believe again that YOU are in control over YOUR mind, that YOU determine YOUR thoughts and YOUR emotions. I was not only heavily (post)-traumatized by this experience but also parts of my personality have changed. For example: I have to avoid some social situations because of my increased anxiety. I never had this before Prozac. I also have become extreme sentimental. I used to be a very bright, inquisitive individual. Now I have to force myself to be with people and to learn new things. I feel mentally raped by Prozac and it nearly killed me, but it could not destroy my essence.

SSRI’s are without any doubt the most dangerous and underestimated drugs on this planet and for what I and many other individuals have experienced, the product of pure evilness. These SSRI’s are products of pure darkness disguised as “angels of light”. It’s striking to see how they rush their “blitzkrieg”, to deceive the world, how people on them, are defending their drugs to the bone, worshipping them. It’s striking to see how our doctors have blind faith in SSRI’s and invite them to come in, like they were descendents of the Gods. It is a very frightening development of OUR future ! It’s very frightening to see the power of the almighty pharmaceutical companies, who develop and push their SSRI’s to the world, using their power by influencing the health care system and the media. It’s very frightening to watch a world of individuals fall asleep, who ridicule the cause of increasing school- and workplace shooters by using the nickname of “the Prozac Defense”. I can only hope that these individuals wake up from their dream-states in the near future, to find themselves naked and that they may see how many human lives their deceivers have destroyed in their surroundings….

–Charly–

3/11/2001

This is Survivor Story number 7.
Total number of stories in current database is 34

521 total views, 1 views today

Bad Effects from Macrobid

“To me, it is poison.”

 

My experience with Macrobid: Within about a 15-month period, I was put on Macrobid about 6 times for recurring urinary tract infections. By the 5th and 6th time, I was experiencing extreme fatigue; extreme muscle pain in my neck, shoulder and upper back; very irritable; and I felt like I was having a nervous breakdown. I could barely function. At about the 3rd day on this drug (when I took it the last time) I could not get up and go to work, I felt so exhausted. I also experienced headaches.

I felt like I had the worst flu with the aches, pains, and fatigue, and my mood took a turn for the worst. I called Poison Control here in Miami and they told me that “yes, you are experiencing all these side effects from the Macrobid. Stop taking the drug and the effects are slowly reversible.” I also called my doctor and he basically said the same thing. The bad effects from this drug lasted for about three months. I felt horrible and could barely take care of myself and my animals and go to work. I felt like I needed to get on disability and to take a leave of absence from work. I had to go to the chiropractor about 3 times a week to relieve the pain. The pain would not go away. And then I started going to a pain center for deep neuromuscular massage and finally ended up with a Rheumatologist about 4 weeks ago who has taken extensive blood tests, of which I have not gotten the results yet, and he put me on 2 anti-depressants (Celexa and Deseryl) and arthritic medication (Celebrex). I have slowly started to recover, regain my energy, and mentally feeling better.

I still experience pain in my body, but it has improved. I believe I have Fibromyalgia and that the Macrobid aggravated every symptom in my body to the fullest degree possible.
To me, it is poison.

Eva Wilson EMW
EMW@co.miami-dade.fl.us

10/5/2000

This is Survivor Story number 11.
Total number of stories in current database is 96

556 total views, 2 views today

Terrified on Effexor

“I could not even go out to my car to go to the hospital. I became terrified, I could not leave the house.”

 

I just read the article from Pat Spruill regarding [her experiences] being a volunteer on a hot-line. I too called a hot-line after about 3 days on Effexor. (The girl at the distress center was condescending and I really should have reported her but was too upset.) I became immobilized, I could not even go out to my car to go to the hospital. I became terrified, I could not leave the house. I felt like what I imagine a moose feels like looking into the headlights of a car. It was the worst experience I ever had on anti-depressants. (I have tried Prozac, Zoloft , Zyban (Wellbutrin), all with extreme negative side effects.) Had I not known that this was a reaction to the drug, I honestly do not think I would be here today. Luckily my son was home at the time. The worst of this is that when I reported it to my family doctor he said, “Oh those reactions go away after 2-3 weeks.” My pharmacist advised me that this was an abnormal reaction and not to take anymore. Depression, sad to say, is still today looked upon as something folks bring upon themselves ..even by our doctors; so the easiest way for the doctors to “keep us quiet” is to dope us up and hope we go away. (I plan to report my doctor when I find a new one.)

Years 2000 and Prior

This is Survivor Story number 88.
Total number of stories in current database is 96

340 total views, no views today

Antidepressants for Chronic Fatigue Syndrome

“It was truly the worst experience I’ve ever had and will never blindly take those drugs again…”

 

I just want people to know that there is a whole lot to this problem that no one is talking about. I have been put on several anti-depressants for CFIDS (Chronic Fatigue Syndrome) by one doctor, and put on another anti-depressant for pain. I was told these drugs are used to increase the amount of chemicals in your brain that buffer pain. I flat out told everyone loud and long that I was not depressed, but still they hand out anti-depressants like they are candy. I suffered terrible reactions to them. I would have such vivid nightmares that I could feel what it was like to stab someone, I could hear blade against bone. It was truly the worst experience I’ve ever had and will never blindly take those drugs again, although they are still trying to give them to me. My daughter is in college, and the largest number of people on this drug now I would guess would have to be college students. They hand them out like candy to these kids and they are really getting screwed up over this. Several of her friends have become suicidal. I don’t think anyone who isn’t a shrink, should not be allowed to prescribe these drugs. Please do a show on the miss-prescribing of this drug.

Thanks for your good work.

Bonny Jacobson

 

Years 2000 and Prior

This is Survivor Story number 44.
Total number of stories in current database is 96

466 total views, no views today

Unprepared for the Horrendous Withdrawal from Effexor (update 4 months later)

“Sometimes it felt as if my brain was shuddering in my skull…”

 

I realize that this is what most would consider a long letter. However, it is only a brief summation of my own personal experience. Please, especially those of you who are parents or grandparents, teachers or counselors, just take the two minutes it takes to read it, then just put it in the back of your mind. Or pass it on.

Anti-depressants are quite often being cavalierly dispensed to the population in general. Also, they are prescribed to help kids who’ve been on Ritalin for years get through the difficult process of the cessation of that drug. And now the manufacturers of these drugs are planning to produce it in smaller doses for their next target population: pre and elementary school aged children! These drugs have a very high percentage rate of undesirable and sometimes dangerous side effects.

Several years ago I broke my wrist, which caused me to develop a rare condition known as Reflex Sympathetic Dystrophy. One of the medications I was given to try to control the pain was Effexor. Effexor is a serotonin reuptake inhibitor, or an SSRI. These drugs are commonly known as anti-depressants. Prozac is probably the most commonly known drug in this class. I was on this drug for less than 6 months when, for reasons of my own, I decided I wanted to get off. That’s when my nightmare began.

One cannot just stop taking these drugs. There is a tapering off process which must be followed. This is because there are very often serious and debilitating withdrawal symptoms. However, I was not told of these symptoms, and I now know that the doctor did not know about them, either. He told me only that nightmares were a common occurrence during this process, and that I might also experience “mild, flu-like” symptoms and “slight confusion.” During this initial, original prescribed tapering off process, which was supposed to take about 2 weeks, I experienced vivid and terrifying nightmares. I could not shake these off for hours after I had wakened. Since I was extremely tired, I napped a lot. Each time I napped, there would be a nightmare, and the process would repeat itself several times daily. I really was unprepared for their intensity and lasting after-images.

Then came the day I was to stop taking it. To make a long story short, these were some of my symptoms: A weird visual thing would happen for about a second, about 4 times a minute. I can only compare it to what it feels like to try to track the arrow of the mouse across the page. But I knew it was not my eyes that were doing this, I could feel it was my brain. (October, 2000: I’ve just found out that the term for this is “staccato vision”). I also experienced what people who have this call a sensation “like electric shocks” or “jolts” to my whole body which also occurred for a split second every 15 seconds or so. When these occurred at night, in the dark, they were accompanied by a flash of white light. It’s as if I were “whiting out” (instead of “blacking out”) for just a split second every 15 seconds or so. These incidents began to increase in intensity and began to be accompanied by panic and/or paranoia flashes. Eventually, just moving caused such dizziness and disorientation that I had to hold onto whatever was around me to walk. Sometimes it felt as if there were a magnet to one side of me, pulling me that way. The “slight confusion” I experienced is something I can only imagine is what beginning Alzheimer’s patients must feel like during the initial stages of their eventually terminal mental decline during the time when they are still aware that something is really going wrong. Sometimes it felt as if my brain was shuddering in my skull a sensation that has come to be called “Brain Shivers” or “Brain Flips” by many. Numerous other things were happening as well, but I don’t want to get too long-winded here. I just want to give you all some idea of some of the kinds of things that were happening.

So, I made an appointment with the prescribing doctor, and a friend was kind enough to take me there. But the doctor did not believe me! He said that it couldn’t be the Effexor, that I probably had some neurological problems and that if the symptoms persisted, I should see a neurologist. But I KNEW it was the Effexor, so I went home, took another pill, and felt fine within the hour. Then I got on the ‘net. What I found there was astounding! Tons of people, all with the same things happening to them, reaching out to anonymous others and saying, “Help! What is happening to me?” These I found on bulletin boards, NOT on product information sites put up by the people who are selling the stuff.

I tried calling the Drug Company to find out what was happening to me and how to stop it. I never did reach them. Fortunately for me, my primary care physician had heard of these symptoms and knew how to deal with them. She advised a long, slow tapering off process, telling me that it could take one to two months for me to be able to get off. Also fortunately for me, she told me to take as long as I needed.

It took me 10 MONTHS! During that time, the symptoms mentioned above continued, although diminished enough for me to be able to function almost normally. But other things began to happen. I saw things out of the corners of my eyes, which were not there. We all do that, but this was pretty constant. One thing I saw which I never told anyone about until it had stopped was a big, hairy rat about 1 foot long, scurrying around corners. Keep in mind that I was not on this drug because I was in any way mentally unbalanced, it was merely to help with the pain. I saw, and still see occasionally, a pinpoint of violet shimmering light. Also, things would seem to be moving out of the corners of my eyes. A spot on the wall, for example, I would think was a spider crawling until I looked directly at it, when I would realize it was just a spot on the wall. These things did not scare me, but they were frequent and startling and bothersome.

I took my last little crumbs of Effexor in September of 1999. End of story?

Unfortunately, no. It is now the end of July, 2000, and I still experience some of the same symptoms, although they are manageable. I also have experienced monstrous headaches. The first one, back in September, lasted 4 days. I thought I was going to die. I even told my son that I might die. I debated about that for a while, but did not want him to wake up and find me dead one morning. Fortunately, I’m still here. My headaches began to decrease in length, and now they seem to last only 2 hours or so. They go away within one minute. Sometimes I’m just achy all over. I guess that experience is the “mild, flu-like” symptoms I’d been warned about. I still have days I call “my stupid days”, and they usually signal the beginning of episodes lasting several days, involving vertigo, dizziness, short anxiety attacks, some euphoria occasionally, the “brain shivers”, and numerous other weird symptoms, and culminating in a headache. Then I’m fine for however long it lasts. Sometimes I feel whole body tremors, not enough to make me twitch, and they are not unpleasant, but they’re there and they shouldn’t be.

I am concerned about this. I want to know why, after not taking this drug for so long, I am experiencing this “discontinuation syndrome”, and when will it stop? I have not yet found the answer.

I finally did get in touch with the Drug Company to ask them these questions and they took down all my information. They have never explained why, and they have never followed up. They would not talk to me about my symptoms, they would only talk with my doctor. And this was not OK because the doctor did not believe me! (This was not the prescribing doctor who hadn’t believed me when I first tried to get off, this was the doctor who’d prescribed the tapering off process.) But I told her to call them and talk to them, and it was pretty easy for them to shine her on, since she didn’t believe me anyway. And they sent her a letter advising a slow tapering off of the drug, which I’d already done, of course, AND a “report” from a closed symposium on SSRIs sponsored by the a drug company ‘way back in 1996! (Which, of course, did not address the issue.)

The more research I’ve done on these things, the angrier I become. Because the drug companies have known about these things for years. Many people and their families have gone through much, much worse than I have. Some people have never been able to get off the drugs.

Now, what would YOU do if you were manufacturing these things? You’d probably say’ “Whoa! We need to stop selling these things until we can find out what’s causing this. We’d better get in touch with each and every one of those people who are having these extreme reactions, do whatever we can to help them, and to identify what it IS about them that makes them react differently than those who have no problems with the medication.” Well, not only are these companies not doing this, they are manufacturing the drugs in smaller doses so that CHILDREN can take them! Yes, Prozac is currently being tested on pre-school aged children! And although these drugs have not YET been approved for use in children, the numbers of children aged 6-12 being prescribed Prozac has risen from 41,000 in 1995 to 203,000 in 1996. Currently, in 2000, 2.3 million children in the U.S. are on anti-depressants. The official literature on these drugs says that they are safe for pregnant women to take! And there are documented cases of newborns being born with the more evident withdrawal symptoms (which the drug companies are ignoring because nobody can prove it. Isn’t that horrible?!). The companies that manufacture these things are re-naming Prozac “Seraphim” or something and doctors are prescribing it for PMS!

Are these drugs harmful to absolutely anyone who takes them? Of course not. And for many, these drugs have proven to be beneficial. However, they are NOT only being prescribed for major, long-term depressions, but for such things as the Holiday Blues and teenage angst! But the percentage risk for horrible and even deadly side effects is extremely high. (See the 3rd link below.)

Please, unless you are chronically depressed or have something really, really severe, stay away from this class of drugs. And please, NEVER EVER put a child on these things! I am an intelligent, articulate, resourceful middle-aged woman. When a wave of panic starts to wash over me, or any other of these weird things start to happen, I can tell myself to just hold on, it’s just the after-effects of the drug, it will go away, I should take a deep breath and relax, etc. Do you think a child or a newborn could do the same? I can’t imagine what it would be like to be a child in school and to suffer the kind of confusion I’ve been through and manage to learn anything, let alone be involved in a physical activity or sport! This has been going on for nearly 2 years with me, and I don’t know when it will end!

Thank you for taking the time to read my story. This has been a BRIEF synopsis of what my life has been like for the past two years. And it’s nothing compared to what others have been through.

Update, October, 2000:

In the few months since I wrote this, I found that these continued withdrawal effects after not haven taken the drug for a long time is a phenomena which has not one but two names: PANES (Persistent Adverse Neurological Effects) and “Intractable Withdrawal”. This phenomenon was noted as early as 1996, before I began taking Effexor. How can the pharmaceutical companies deny the existence of something that has occurred enough to even have a name?

Several months ago I was driving with my son on the freeway at night and I felt fine. Out of the blue, a wave of disorientation and that peculiar form of dizziness I associate with my “Effexor Episodes” came upon me. I found myself in the middle of two lanes with no remembrance of which one I had come from. I was too scared to look in the rear view mirror to see what was behind me. I heard my son yell, “What are you doing?” A car was breaking to the left of me. I asked my son which lane I should go into and he told me to go right. Fortunately the freeway was not crowded. I was dizzy and scared and felt as if I was going to pass out. Soon there was an exit and I took that off the freeway and my son continued the drive home. I have not driven at night since.

I am a 50 year old woman with an excellent driving record. I made it. I feel sure that if there had been more cars on the freeway there would’ve been a terrible accident. Children from the ages of 6 up are being prescribed these drugs. They are getting their learners permits and at age 16 are given driver’s licenses after passing very easy tests. Maybe you or a loved one will be in a car next to one someday. Maybe you’ll be in an airplane piloted by a pilot who’s missed a dose, directed by an air traffic controller who’s trying to get off this stuff. Maybe you’ll be next to a taxicab driver or a bus driver or a commuter who is suddenly euphoric or has a momentary panic attack. I won’t drive at night, and am careful about where and when I drive in the daytime. But I really don’t think that many can afford to do that. I think they’ll just drive and hope for the best. And that is really, really scary to me.

Louise Mangan

7/1/2000

This is Survivor Story number 19.

Total number of stories in current database is 96

403 total views, no views today

Staccato Vision, Whiting Out and Brain Shivers on Effexor

“Please, unless you are chronically depressed or have something really, really severe, stay away from this class of drugs.”

 

Dear Friends and Acquaintances,

I realize that this is what most would consider a long letter. However, it is only a brief summation of my own personal experience. Please, especially those of you who are parents or grandparents, teachers or counselors, just take the two minutes it takes to read it, then just put it in the back of your mind. Or pass it on.

Anti-depressants are quite often being cavalierly dispensed to the population in general. Also, they are prescribed to help kids who’ve been on Ritalin for years get through the difficult process of the cessation of that drug. And now the manufacturers of these drugs are planning to produce it in smaller doses for their next target population: pre and elementary school aged children! These drugs have a very high percentage rate of undesirable and sometimes dangerous side effects.
As many of you know, several years ago I broke my wrist, which caused me to develop a rare condition known as Reflex Sympathetic Dystrophy. One of the medications I was given to try to control the pain was Effexor. Effexor is a serotonin reuptake inhibitor, or an SSRI. These drugs are commonly known as anti-depressants. Prozac is probably the most commonly known drug in this class. I was on this drug for less than 6 months when, for reasons of my own, I decided I wanted to get off. That’s when my nightmare began.

One cannot just stop taking these drugs. There is a tapering off process which must be followed. This is because there are very often serious and debilitating withdrawal symptoms. However, I was not told of these symptoms, and I now know that the doctor did not know about them, either. He told me only that nightmares were a common occurrence during this process, and that I might also experience “mild, flu-like” symptoms and “slight confusion.” During this initial, original prescribed tapering off process, which was supposed to take about 2 weeks, I experienced vivid and terrifying nightmares. I could not shake these off for hours after I had wakened. Since I was extremely tired, I napped a lot. Each time I napped, there would be a nightmare, and the process would repeat itself several times daily. I really was unprepared for their intensity and lasting after-images.

Then came the day I was to stop taking it. To make a long story short, these were some of my symptoms: A weird visual thing would happen for about a second, about 4 times a minute. I can only compare it to what it feels like to try to track the arrow of the mouse across the page. But I knew it was not my eyes that were doing this, I could feel it was my brain. (October, 2000: I’ve just found out that the term for this is “staccato vision”). I also experienced what people who have this call a sensation “like electric shocks” or “jolts” to my whole body which also occurred for a split second every 15 seconds or so. When these occurred at night, in the dark, they were accompanied by a flash of white light. It’s as if I were “whiting out” (instead of “blacking out”) for just a split second every 15 seconds or so. These incidents began to increase in intensity and began to be accompanied by panic and/or paranoia flashes. Eventually, just moving caused such dizziness and disorientation that I had to hold onto whatever was around me to walk.
Sometimes it felt as if there were a magnet to one side of me, pulling me that way. The “slight confusion” I experienced is something I can only imagine is what beginning Alzheimer’s patients must feel like during the initial stages of their eventually terminal mental decline during the time when they are still aware that something is really going wrong. Sometimes it felt as if my brain was shuddering in my skull a sensation that has come to be called “Brain Shivers” or “Brain Flips” by many. Numerous other things were happening as well, but I don’t want to get too long-winded here. I just want to give you all some idea of some of the kinds of things that were happening.

So, I made an appointment with the prescribing doctor, and a friend was kind enough to take me there. But the doctor did not believe me! He said that it couldn’t be the Effexor, that I probably had some neurological problems and that if the symptoms persisted, I should see a neurologist. But I KNEW it was the Effexor, so I went home, took another pill, and felt fine within the hour. Then I got on the ‘net. What I found there was astounding! Tons of people, all with the same things happening to them, reaching out to anonymous others and saying, “Help! What is happening to me?” These I found on bulletin boards, NOT on product information sites put up by the people who are selling the stuff.

I tried calling the Drug Company to find out what was happening to me and how to stop it. I never did reach them. Fortunately for me, my primary care physician had heard of these symptoms and knew how to deal with them. She advised a long, slow tapering off process, telling me that it could take one to two months for me to be able to get off. Also fortunately for me, she told me to take as long as I needed. It took me 10 MONTHS! During that time, the symptoms mentioned above continued, although diminished enough for me to be able to function almost normally. But other things began to happen. I saw things out of the corners of my eyes, which were not there. We all do that, but this was pretty constant. One thing I saw which I never told anyone about until it had stopped was a big, hairy rat about 1 foot long, scurrying around corners. Keep in mind that I was not on this drug because I was in any way mentally unbalanced it was merely to help with the pain. I saw, and still see occasionally, a pinpoint of violet shimmering light. Also, things would seem to be moving out of the corners of my eyes. A spot on the wall, for example, I would think was a spider crawling until I looked directly at it, when I would realize it was just a spot on the wall. These things did not scare me, but they were frequent and startling and bothersome.

I took my last little crumbs of Effexor in September of 1999. End of story?

Unfortunately, no. It is now the end of July,2000, and I still experience some of the same symptoms, although they are manageable. I also have experienced monstrous headaches. The first one, back in September, lasted 4 days. I thought I was going to die. I even told my son that I might die. I debated about that for a while, but did not want him to wake up and find me dead one morning. Fortunately, I’m still here. My headaches began to decrease in length, and now they seem to last only 2 hours or so. They go away within one minute. Sometimes I’m just achy all over. I guess that experience is the “mild, flu-like” symptoms I’d been warned about. I still have days I call “my stupid days”, and they usually signal the beginning of episodes lasting several days, involving vertigo, dizziness, short anxiety attacks, some euphoria occasionally, the “brain shivers”, and numerous other weird symptoms, and culminating in a headache. Then I’m fine for however long it lasts. Sometimes I feel whole body tremors not enough to make me twitch, and they are not unpleasant, but they’re there and they shouldn’t be. I am concerned about this. I want to know why, after not taking this drug for so long, I am experiencing this “discontinuation syndrome”, and when will it stop? I have not yet found the answer. I finally did get in touch with the Drug Company to ask them these questions and they took down all my information. They have never explained why, and they have never followed up. They would not talk to me about my symptoms, they would only talk with my doctor. And this was not OK because the doctor did not believe me! (This was not the prescribing doctor who hadn’t believed me when I first tried to get off this was the doctor who’d prescribed the tapering off process.) But I told her to call them and talk to them, and it was pretty easy for them to shine her on, since she didn’t believe me anyway. And they sent her a letter advising a slow tapering off of the drug, which I’d already done, of course, AND a “report” from a closed symposium on SSRIs sponsored by the a drug company ‘way back in 1996! (Which, of course, did not address the issue.)

The more research I’ve done on these things, the angrier I become.
Because the drug companies have known about these things for years. Many people and their families have gone through much, much worse than I have. Some people have never been able to get off the drugs. Now, what would YOU do if you were manufacturing these things? You’d probably say’ “Whoa! We need to stop selling these things until we can find out what’s causing this. We’d better get in touch with each and every one of those people who are having these extreme reactions, do whatever we can to help them, and to identify what it IS about them that makes them react differently than those who have no problems with the medication.” Well, not only are these companies not doing this, they are manufacturing the drugs in smaller doses so that CHILDREN can take them! Yes, Prozac is currently being tested on pre-school aged children! And although these drugs have not YET been approved for use in children, the numbers of children aged 6-12 being prescribed Prozac has risen from 41,000 in 1995 to 203,000 in 1996. Currently, in 2000, 2.3 million children in the U.S. are on anti-depressants. The official literature on these drugs says that they are safe for pregnant women to take! And there are documented cases of newborns being born with the more evident withdrawal symptoms (which the drug companies are ignoring because nobody can prove it. Isn’t that horrible?!). The companies that manufacture these things are re-naming Prozac “Serafem” or something and doctors are prescribing it for PMS! Are these drugs harmful to absolutely anyone who takes them? Of course not. And for many, these drugs have proven to be beneficial. However, they are NOT only being prescribed for major, long-term depressions, but for such things as the Holiday Blues and teenage angst! But the percentage risk for horrible and even deadly side effects is extremely high.

Please, unless you are chronically depressed or have something really, really severe, stay away from this class of drugs. And please, NEVER EVER put a child on these things! I am an intelligent, articulate, resourceful middle-aged woman. When a wave of panic starts to wash over me, or any other of these weird things start to happen, I can tell myself to just hold on, it’s just the after-effects of the drug, it will go away, I should take a deep breath and relax, etc. Do you think a child or a newborn could do the same? I can’t imagine what it would be like to be a child in school and to suffer the kind of confusion I’ve been through and manage to learn anything, let alone be involved in a physical activity or sport! This has been going on for nearly 2 years with me, and I don’t know when it will end!

Thank you for taking the time to read my story. This has been a BRIEF synopsis of what my life has been like for the past two years. And it’s nothing compared to what others have been through.
Yours,
Louise Mangan

Update, October, 2000:
In the few months since I wrote this, I found that these continued withdrawal effects after not haven taken the drug for a long time is a phenomena which has not one but two names: PANES (Persistent Adverse Neurological Effects) and “Intractable Withdrawal”. This phenomenon was noted as early as 1996 before I began taking Effexor. How can the pharmaceutical companies deny the existence of something that has occurred enough to even have a name?
Several months ago I was driving with my son on the freeway at night and I felt fine. Out of the blue, a wave of disorientation and that peculiar form of dizziness I associate with my “Effexor Episodes” came upon me. I found myself in the middle of two lanes with no remembrance of which one I had come from. I was too scared to look in the rear view mirror to see what was behind me. I heard my son yell, “What are you doing?” A car was breaking to the left of me. I asked my son which lane I should go into and he told me to go right. Fortunately the freeway was not crowded. I was dizzy and scared and felt as if I was going to pass out. Soon there was an exit and I took that off the freeway and my son continued the drive home. I have not driven at night since.
I am a 50 year old woman with an excellent driving record. I made it. I feel sure that if there had been more cars on the freeway there would’ve been a terrible accident. Children from the ages of 6 up are being prescribed these drugs. They are getting their learners permits and at age 16 are given driver’s licenses after passing very easy tests. Maybe you or a loved one will be in a car next to one someday. Maybe you’ll be in an airplane piloted by a pilot who’s missed a dose, directed by an air traffic controller who’s trying to get off this stuff. Maybe you’ll be next to a taxicab driver or a bus driver or a commuter who is suddenly euphoric or has a momentary panic attack. I won’t drive at night, and am careful about where and when I drive in the daytime. But I really don’t think that many can afford to do that. I think they’ll just drive and hope for the best. And that is really, really scary to me.

Louise Mangan

7/1/2000

This is Survivor Story number 18.
Total number of stories in current database is 96

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10/01/1999 – Doctor: Link Between Medicines, Killing

Recent article in the Smithville Review regarding Robert Kirkwood’s
tragic experience with anti-depressants.

Two area cases involved anti-depressants
By DENNIS STANLEY, THE SMITHVILLE REVIEW
(Editor’s Note: This is the second of a two-part series.)

http://smithvillereview.edge.net/index.ez?Form.sess_id=8934&Form.sess_key=938122849&viewStory=483

In October, 1993 Wilma J. Adcock of the Antioch Community shot her
nine- and 15- year-old sons in the chest twice with a .357 revolver and
then turned the gun on herself.

In July this year, Rosemarie Kirkwood of Lebanon drove to a scenic
overlook above Center Hill Lake in DeKalb County and shot her two young
children and then shot herself.

Is there a connection? Ann Blake-Tracy, Director of the
International Coalition For Drug Awareness, thinks there’s a definite
connection — anti-depressant medication.

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