I’m not anti-medication, but I am anti-bullshit. I know that medications truly help some people, and some people do well on them. Those people should feel free to continue using them. However, I think all people should be given honest information about psychiatric meds before being put on them. We should be told how hard they can be to get off, and that there is not a ton of research showing long term effectiveness for medications. We should be given the truth that the chemical imbalance theory has not proven to be true. We should be given help and support for getting back off the medications as soon as possible. This would be the best way to help the 40% of people that do not respond to any given medication and might actually be harmed by it. In our current system, people unhelped by medications are only given more medications as well as the message that they are doing something wrong if they’re not recovering.
Steven Hyman from the NIMH in 1996 article in the American Journal of Psychiatry [vol. 153:151-162] explained that all psychotropic medications, both illicit substances and prescribed medications, work by “causing perturbations in normal neurotransmitter functioning.” Robert Whitaker quoted this article yesterday in his keynote address at the National Empowerment Center’s conference where activists came together to figure out what to do about the over-prescription of psychiatric medications. This article says, “The immediate molecular targets of these drugs in the nervous system initiate perturbations that activate homeostatic mechanisms… until cellular signalling reaches an adapted state which may be qualitatively and quantitatively different from the normal state.” These adaptations are things like up-regulation of transmitters being blocked and down-regulation of transmitters being boosted. When the drug is withdrawn, these adaptions remain. Robert Whitaker said, “For the illicit drugs, we call this process addiction. For the prescribed medications, we call this process therapeutic.” This is why psychiatric medications are so hard to get off. This is my success story of how I did it.
When I was really disconnected with my community
I was really sick for a long time and now I’m not. The stats are something like 12 psychiatric diagnoses, 5 hospitalizations, 6 suicide attempts, 6 meds at one time, and 7 shock treatments. I came out of my very worst hospitalization and my doctors started helping me get the medications reduced. I got completely tired of being on uppers in the morning so I could stay awake, and then downers at night so I could sleep. I kept going back to each doctor and asking one by one, “Do I really need to be on this medication?” Some medications were really hard to get off and some were pretty easy. I went slow, worked with my doctors and tons of support people, and always only made one change at a time, and only when my life was in a stable situation.
I was on Provigil, a very expensive narcolepsy drug, because I was very sleepy during the day. I once fell asleep during a job interview, and the interviewers brought me a cup of coffee and kept cutting the interview shorter and shorter. I got off that drug in order to complete a sleep study and worked through some tough drowsiness at work. When I worked at a dog grooming shop I laid down in a back room thinking I might just sleep for five minutes when no one was looking. One of my coworkers came in and shrieked because she thought I’d had a heart attack and collapsed or something. “But you know the dogs pee on that floor sometimes…” she protested. After a week or so I got used to being off Provigil and never went back on it. The sleep study doctor who must have known nothing about mental health issues told me to just quit taking all of my meds all at once for two weeks, but I knew that was a lousy idea. Psych meds are different to quit taking than some of the meds that work below the neck.
One of the painfully toughest drugs to get off was Ambien. I was taking it every night for sleep because at first it just seemed to knock me totally out. I think I spent a month getting very little sleep while I withdrew from it. I had this weird conundrum to handle for that, because if I didn’t get enough sleep, I’d have hallucinations and it was better to take the bus to work. But in order to take the bus, I’d have to get up an hour earlier for work. Some nights I gave in and ended up taking the Ambien at something like 2 in the morning even though I had to be at work at 6:30 am.
Depakote was the absolute best drug to get off. I was in a hospital and had gained about 60 pounds by then and the doctors thought something else would cause less weight gain. They put me on Trileptal. These are both anticonvulsants used at “mood stabilizers” for my bipolar (at the time) diagnosis. In a few days after getting off the Depakote, I ate a meal and felt full. I thought, “Oh, yeah, that’s what been missing.” For two years I had never felt full after eating. That’s why I gained so much weight on Depakote. I was still trying to watch what I ate but it’s tough to guess without a body signal.
About a year later I asked my doctor if he thought that maybe my antipsychotics had enough “mood stabilizing” properties that I might not need the Trileptal. He said, “Well, let’s do a blood level and find out.” The lab test showed that I wasn’t even taking enough of the medication to be at a “therapeutic” blood level. The doctor said to go ahead and drop it, and not even taper. I never actually felt a difference as I came off that med. But the doctor also said to increase the antipsychotic at the same time, “just in case.” I went from the maximum dose of Geodon in the Physicians Desk Reference, 160 mg, to 150% of the maximum dose, 240 mg.
The last med was the hardest
After about six months of that, I started getting Parkinson’s disease. In mental health, we call it “tardive dyskinesia,” because maybe if we give it a different name than drug induced Parkinson’s, it doesn’t sound so bad. I had been having these strange attacks in the mornings where my mouth was really stiff and felt like I was choking and didn’t want anything around my neck like my bike messenger bag. I really badly craved sleep and felt totally panicky when these crazy things were happening. I called them “Sleep attacks” and kept trying to get help from my psychiatrist but nothing clicked with him. I thought a stimulant would help but he wouldn’t prescribe one. Eventually my mom who is family practice doctor figured out what what happening and I went to the doctor and told him to check me for Parkinson’s. He said I did have it, with a rating of 4 on a 15 scale. He said, ”Well, we’ll put you on a med for that.”
I said, “Can’t we just try reducing the Geodon, instead?” I went back down to 160 mg. all at one shot and never really noticed it. I was pretty nervous about it because at that point was life was going pretty well with stable work and housing and I was starting to develop some hobbies and friendships. I was worried about losing that stuff if I went backwards, but it didn’t seem to work out that way. Eventually I decided to keep going down and made it pretty well OK to 80 mg of Geodon, at which point my doctor started giving me friction and using scare tactics.
Every time I asked to go down he would flip back the medical chart and read excerpts to me from the times I was more out of it. He said, “You don’t want to lose everything, do you?”
Eventually I said to him, “The question is not whether I’d get sick if I went off the medications. The question is whether if I got sick, I would realize it in time to get back on the meds. I’ve never been so out of it that I didn’t realize that I was having hallucinations. I’ve never lost complete touch with reality even when I was really challenged. So I think the answer to THIS question is yes.” I told him I wasn’t opposed to the idea of meds, that I didn’t think I’d be more recovered off meds, maybe just a little more healthy. That’s when he agreed to let me try going off them. I was still using just a little Ambien now and then when I got really wired and a little Xanax maybe once a month when I got really scared. I used them a little more through this reduction. I went down 20 mg each time, about a month apart. I couldn’t go any slower because Geodon is capsules and not tablets so it’s tough to divide. Later my mom told me that I could alternate doses on alternate days and that would have slowed the process down.
Each time I went down the hallucinations returned right away after I made the reduction. But I knew that it was withdrawal symptoms and not the disease retur
ning. Generally the way to tell the difference is that withdrawal symptoms start right away and get better with time, but the illness returns gradually and gets worse with time. I worked through each dose reduction and the withdraw symptoms went away fairly quickly. I still had some extra emotionality I couldn’t figure out how to handle, and got in a couple of fights with my bosses. Then I got all the way down to zero and a few days later everything went crazy and the hallucinations returned with a vengeance. I cried on my doctor’s shoulder and of course he told me to go back on the medications, back up to 80 mg. in fairly short order. I thought that meant I really needed the meds and stayed there for about a year. I found that at 80 mg. the Parkinson’s was barely noticeable but any higher and it would start to bother me. I thought I found a dose that worked with basically no side effects. I figured I was doing pretty well just on one med with a little tiny bit of other meds once in a while. I’d go up beyond 80 mg in temporary problems then right back down when needed.
After a year or so I started having even more trouble sleeping. Some nights that I absolutely couldn’t sleep I’d start having flu-like symptoms. I’d actually fall asleep then wake totally all the way up with a start like I was scared by something. I noticed that usually when this happened I had forgotten to take my medications, and it was just withdrawal symptoms. Geodon has a 7.5 hour half life so it would be mostly cleared out of my system if I forgot to take it even for one day. But then I had this weird withdrawal symptom thing start happening even on nights I was absolutely sure I had taken the meds. My pill counter box was empty on exactly the right day, plus I had a very conscious mindful memory of how I’d filled the water glass or how I”d taken the pill with the other pills, or where it had sat on my hand. I realized that I might be able to sleep better if I did get completely off the drug.
In the last year, I had learned that almost every time I had hallucinations, it was related to my trauma experiences. I have issues around being fired from so many jobs and from making 6 suicide attempts, and when those issues come back up, I have to take two or three days to process them out. I realized that every time I’d disconnected from reality in the last three years was around the trauma issues and never just out of the blue. Of course when I got in trouble at work during my last withdrawal attempt, my symptoms had increased! I learned better techniques for dealing with the triggers and realized I was ready to try getting off the meds totally once I had the time to deal with the withdrawal effects.
Mind UK, a British advocacy organization, found that often doctors are not the most supportive people in medication discontinuance. Mine tried the same scare tactics this time, “But I don’t know anyone who has ever successfully gotten off antipsychotics.”
I said, “Well, I’m pretty involved with the consumer movement. By now I know of about 30 people who have done it and have great lives.” This time I again tried about 20 mg reductions each month but this time the withdrawal symptoms were a lot tougher. I didn’t have any increase in hallucations, but each reduction came with a lot of emotional instability. I fought with my fiance about stupid stuff, like whether he looked like a dork for wearing his coat backwards in winter while cycling because the wind really only hit his front side, anyway. I’ve been learning more in the last year or so how to access my emotions and not freeze and be stoic all the time, and this started bleeding through. After all, putting a stoic and reserved person on emotional numbing drugs may not be the best recipe for learning how to handle emotional difficulties. I tried slowing down the withdrawal but the sleep problems started getting worse and worse.
I finally figured out that the slow withdrawal might not be the best thing, so the last withdrawal, 40 mg. to zero, I did all at once. I timed it during a bicycle tour that
I was doing so that I would be filling my brain with endorphins and good chemicals to help smooth out the changes. I was planning to ride 80 – 100 miles a day for six out of the nine next days. I’d suggest two hour walks for a less active person. The first day was completely miserable and I had massive headaches after two hours of sleep, this terrible flu-like feeling, and no ability to handle big groups of people.
Then that next night I slept nine hours and had about 30 dreams. These were beautiful, creative, strange dreams, more than I’d ever had before. One of them involved standing on a bridge over the Missouri river (which I’d crossed on my tour the night before) and dropping cornflakes down into the river and watching huge catfish and sturgeon swim up to eat them. I thought it was so exciting that I kept dropping more cereal and watching the flakes swirl down all the way to the water and then the fish gracefully come get them. When I woke up, I realized that the Missouri river is so muddy and brown that I never would have been able to see fish like that, but it was still big and beautiful. My fiance said it sounded like REM rebound. This is what happened to him after he got his sleep apnea treated and he finally got REM sleep for the first time in a long time. I kept having these amazing dreams for about a week.
The best thing was that I started feeling tired at bedtime for the first time in 10 years. I started falling asleep right away at bedtime instead of having to lay there for an hour on a good night or 3 hours on a bad night. It was this incredible feeling just like when I had gone off the depakote, and started finally feeling full again. That’s what I had been missing all those years. The other really good thing that happened was that the agitation and restlessness I’d felt for the last six years was all of a sudden gone. I felt much mellower, more relaxed, and at peace. It’s been wonderful.
I’m finally free, and my body and mind is loving it. I wish I’d believed in myself enough to do this years ago.