“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.
This is Survivor Story number 19.
Total number of stories in current database is 96