Monday, June 08, 2009

SSRIs withdrawal hell and lasting side effects after quiting the drug - two testimonies

As many people are not aware that SSRIs and SNRIs are powerful drugs that have serious side effects and withdrawal is a hell I'm reposting this. One of the stories is about long lasting withdrawal symptoms after being off Effexor.

"I've saved these two stories on July 21,2005 from the site
drugawareness.org . Unfortunately the site has changed and the database of 276 stories are no longer online. Two of them are here. Get the Kleenex.

This is Survivor Story number 24.
Total number of stories in current database is 276

The Effexor Nightmare
The drug company should have let us known that this could happen to us.

Six years ago I had became very depressed. Little did I know that depression ran in our family, starting with my grandmother, my mother and then myself.

I tried for three long agonizing years to beat the beast in my life. Finally, I decided to go and talk to my doctor about my depression and she put me on Paxil. I don't even remember half of what I did for about a month. All I could do was cry and sleep. She then decided to put me on Effexor, which has been just as bad. I have gained so much weight that I find myself still depressed.

In all I have gained 53 pounds. I also have other side effects that I had no idea the Effexor was causing until I starting researching the drug. I have muscle tremors that my doctor put me on seizure medicine for. I also have headaches, and I cannot sleep. An example is that I am writing this and it is almost three in the morning and I get up at five to get my children ready for school. This is another problem. I do not feel like doing anything because I feel numb almost all the time and if I forget to take my medicine I become very aggressive and outspoken in a very ugly manner and this is not the person I am nor do I want to continue to be this way.

I don't feel like cooking, cleaning, washing, or doing everyday activities and I also have problems with my memory and that is a bad thing when you have children to do things for everyday, and it takes a toll not only on me but my family. I am only 33 and I want to be able to live a normal life and that will never be until I get this medicine out of my system. I want to be a good wife and mother, and not have my family suffer with me through this hell. If I had known what this crap would do to me I would have never swallowed that first pill. I will continue to pray for all those that are taking the drug Effexor and I hope that you will do the same for me.

Maybe, just maybe we can beat this addiction to a drug that was suppose to help us overcome depression. And the drug company should have let us known that this could happen to us. What if it was their wife, their child, or their relative that had to live the Effexor nightmare? Would it make a difference to them then or would it be just another dollar in their pockets?
Gary Kelley

This is Survivor Story number 199.
Total number of stories in current database is 276

Unprepared for the Horrendous Withdrawal from Effexor (with an 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


Anonymous Drifter said...

Just as the author states, it's scary that these drugs are going to be prescribed for children. I can't imagine the effect it's going to have on their lives and well-being.

Anonymous said...

These were extremely moving, Ana. Thank you.

Ana said...

I have reposted it because I 17 years-old girl have commented that she was in doubt if whether her doctor was right or her family telling her that she would be addicted for life.

The first time I did read it i could not believe.

Unknown said...

Just want to keep this blog post alive. I was on a low dose of Prozac from 1992 to 2000 as a treatment for chronic pain. I tapered off of it gradually after I realized that it was leading to cognitive dysfunction, making driving dangerous, and giving me sudden suicidal and homicidal impulses that felt like they weren't even coming from me. In fact, I wasn't me anymore. I went through a long period of serious illness from the withdrawal, but got better. The chills, fatigue, emotional lability, stress intolerance, and terrible brain shocks lasted for another 8 years or so. At times I could only stop the shocks by sitting completely still in a quiet room with my eyes closed. They are gone now, but I now have hypersensitivity to sounds and smells, hyperalert responses to sudden movements nearby, and the killing of my sex life appears to be permanent.

All that for something that never even helped my pain.

Ana said...


Thank you for sharing. It makes me so sad and angry.

Tamara said...

I too have had severe side effects from effexor. My physicians and health insurance HMO do not believe me. 4 weeks after beginning effexor, I started having strange neurological symptoms which I did not realize were being caused by the effexor. I developed torticollis, severe neck pain. my legs became weak and I developed severe posterior knee pain. The knee pain felt like I had hyperextended my knees. I ended up in the ER, the neurologist told me I was hyperreflexic and ordered a cspine MRI. I had a herniated disc which led to a disc replacement at c5-6. But my neurological symptoms did not improve! I was completely debilitated and in agonizing pain with no explanation. I continued taking the effexor for a year. Then a pain specialist told me that the pain may be caused from the drug and to stop taking it. I began to taper the drug and I experienced some of the withdrawal symptoms discussed. My symptoms began to improve. I have been off of effexor for 6 mos. now. I continue to have chronic muscle pain/stiffness. I have been diagnosed with myofascial pain syndrome. Lyrica helps, but I also have to take norco to control the pain and stay functional. I absolutely believe the effexor caused this condition. Unfortunately, I am not believed.

Ana said...


Yes, they don't say that the antidepressant - Effexor or others - is the cause of any disease.
But trust your instincts: if you think it was Effexor it was.
We know our bodies and have to trust our instincts.
I'm very sorry about what happened to you.

Anonymous said...

I am also going through severe withdrawal symptoms after being on luvox for 4 years. My problems started 2 months after being off of it when I started feeling extreme pain and sensitivity in my teeth and jaw. I also started having neurolopathic pain while I was on the drug but my psychiatrist would always dismiss any connection with luvox. I am pretty sure that it was caused by luvox since no doctor was able to explain the cause of my neuropathy. Later my doctor who was treating me for neuropathy did agree that it could be caused by luvox but my psychitarist have always been adamant and never agreed. She just kept telling me that peripheral nervous system is different from the CNS and luvox had nothing to do with peripheral nervous system. As if she knows how these drugs work and how the brain works!
My neuropathy gradually improved with exercise and time (more than a year) but now that I have stopped taking it I am again having TMJ and excruciating dental pain which just circulates throughout my jaw. I am in so much distress these days. I will continue to update how my symptoms progress with time and whether I start to feel better or not. I found this great book (http://www.nytimes.com/books/first/g/glenmullen-prozac.html) by a Harvard professor and psychiatrist who mentions that withdrawal from ssri can start even long after stopping it. Also he mentions that it is these drugs that create these problems but also suppress their symptoms during the time we are taking them. This is what happened with me. After being on luvox I experienced peripheral neuropathy, TMJ, dental pain etc but it was tolerable because the drug had suppressed the side effects. However, now that I am off it the symptoms have surfaced up and the pain because of the damage done by these drugs has become excruciating.
My only advice would be to not take these drugs in any case.

Ana said...

Thank you very much for your testimony.
I'll post all the stories that was shared here and if more people leave their experiences I'll post them too.

It is unacceptable that psychiatrists or any other branch of medicine keep on denying the heinous problems caused by these drugs.

They have enough clinical evidences listening to their patients.

Anonymous said...

I was on citalopram 20 for only 3months. The withdr started 1month after i stopped. Nausea and ALOT MORE i dont want to remember. Now,, 4months later the hell started 10days ago with headache nausea weight loss my face has changed and its like fallen, i feel like something pulls me from my head through neck and down like magnit. I pray to god this wont last forever. Tomorrow im seeing neurologist but i refuse to take ssri ever again. My life is hell 7months,im 32 and feel like invalid. Im very tired from this. I HOPE THERE IS HOPE FOR ALL OF US VICTIMS OF THE PHARMAS.

Ana said...

My dear,
Did you taper slowly?
If so maybe it would be better to go back to the last dose you were taking and wait your body to adjust.
After that you could keep tapering very slowly.
I hope your neurologist helps you.
Hang in there!
With time you'll know how to cope with this.
Research. There is a lot of sites, blogs and books.
Knowledge is power and your friend.
You'll find your balance.
You've been only 3 months on Citalopram. This is great for you have more chances to recover.
Yes, SSRIs are no good.