» NORAH

Several years ago, when I went through my first withdrawal from psychiatric medications, I didn’t know what was happening to me. No one had warned me about what to expect, and so the grinding nightmares, sleep paralysis, brain zaps, fever, chills, attacks of rage and dizziness, among other things, caught me entirely by surprise, and scared the hell out of me.

The subsequent rebound effects of discontinuing the meds, effects that included crippling depression and anxiety that were far, far worse than anything I’d experienced before going on medication in the first place, left me wondering if I would ever be functional again without drugs. Loads and loads of drugs.

Was I really that sick? Or was this just my body’s way of trying to adjust to the sudden absence of the SSRIs and other medications that it had become dependent on over the previous five, six, ten years, and which had quite probably altered my brain’s normal functioning. Maybe my brain’s version of normal wasn’t normal anymore. Maybe it would never be again. I had no way of knowing.

Naturally, none of my doctors had warned me that any of this might happen. They told me it was just a worsening of the original depression, a sign that I needed the meds more than ever. But this answer didn’t satisfy me. These doctors weren’t experiencing what I was experiencing. They weren’t taking the drugs I was taking. They didn’t know, first hand, what it was like to feel the way I was feeling, and more often than not, they tended to dismiss my testimony in favor of their received “knowledge” about what these drugs do and do not do. But, as time went on, I got the strong sense that they didn’t really know what these drugs were and were not doing or capable of doing, and this scared and angered me more than anything.

I decided to go elsewhere for advice. I wanted to talk to other people like me. Other patients. Had this happened to anyone else? And what had they done about it? To my mind, these were the real experts.

So, of course, I went online. And to my great lack of surprise, I found the information I was looking for. There WERE other people like me, going through the same withdrawal, and experiencing the same symptoms. Right down to the weird brain zaps and the nightmares. There wasn’t a lot of information, and it wasn’t gathered in one place, but just reading what little I was able to find made me feel much, much better about what I was going through, and it set me on the road to taking charge of my own healthcare, doing my own research, and learning from other people like me.

That’s what I’m hoping this portion of my website can offer you. A place to come and tell your stories, as well as to read other people’s stories, find a little comfort, or camaraderie, and maybe even get some useful advice. It might make all the difference in how you feel right now, when you think you’re alone and sick, and better yet, it might help you to make more informed choices about how to bring about or improve your own health and well-being.

So tell me your story. Have you experienced withdrawal from psychiatric medications? If so, what were your symptoms, and what if anything gave you relief? Have you, in your opinion, been overmedicated, hastily or falsely diagnosed, ill-informed about the side-effects and potential withdrawal or possible dependency associated with the medications you are being or have been prescribed? Have you been able to wean yourself off of medication without suffering long-standing rebound depression, psychosis, anxiety, mania, etc? Have you found effective alternative methods for treating your condition? Have you spent time in a psychiatric facility? If so, what was it like? Did it help or harm you, improve or worsen your condition, and why?

You get the idea. Share the information that so many doctors and pharmaceutical companies don’t and/or won’t share, and often just can’t know or understand. You’ll be surprised how much we can learn, and more importantly, benefit, from each other’s experience.

As soon as you write in with your stories, I'll post them here so that we can all see them. If you prefer to remain anonymous, just use your first name, or a pseudonym if you wish. Please also include your hometown if you would, so that we can get a sense of where people are coming from. Depending on the volume of responses, I can't promise I'll be able to use everyone's story, or all of everyone's story, but I'll do my best. Try to keep your responses as brief as you can, say 500-750 words. If you write in, unless you state otherwise in your email, I'll assume you are giving me permission to post your entry. I reserve the right to edit for length if necessary, but I'll do my very best to do so judiciously.

Many thanks for visiting the site, and for speaking up.

Oh, and buy my book, will ya!

Norah Vincent
New York City, 2008

Send your stories to: norahvincent@gmail.com

» LORIE

Last year I went through a period of depression after my father died of cancer.  I had also retired from my career of 23 years and had given up on fertility treatments after suffering several miscarriages, not to mention depleting a sizable chunk of my huband and mine's savings.  Anyway, I was feeling a bit blue, and noticed that I was developing an increased dependence on alcohol, meaning it was no longer fun, but necessary.  I mentioned this to my doctor, and she in turn advised that I go to a therapist (great advice) and also start taking anti-depressants (not so good advice), namely Effexor.  To make a long story short, they did not work and instead of just letting my therapy do the work it was intended for, she kept prescribing different medications, each worse than the previous.  I quit cold turkey and it was awful.  The brain zaps happened every time I moved my eyes and scared the shit out of me.  I had unreal nightmares, and developed a sort of agoraphobia.  It took two months for all the side effects to go away.  I just went back to my doctor for an unrelated item, and told her I was no longer taking the anti-depressants.  She starting throwing around words like bipolar, etc.  Mind you, this woman is a general practitioner, not a psychiatrist.  She desperately wanted to keep me on some sort of medication!  When I told my therapist about this conversation, she was appalled.  I said to her "I went to my doctor out of concern for my drinking and the next thing I know I am a bipolar alcoholic?!"  It's funny how these things spiral out of control.  You go to see someone because you are feeling a little anxious or sad, and before you know it, you are on prescription psychotropic drugs.  These drugs perpetuate a cycle of dependence, supporting the fact that you now think you are crazy.  Why else would you need them?  When the doctor read back my chart to me, she said things like "feelings of hopelessness" etc.  That's not what I told her.  She had asked me "do you ever feel hopeless?"  I answered "I guess, sometimes."  Suddenly, I have feelings of hopelessness.  Like it's a daily thing.  Do you see where I am going with this?  I actually have a very nice life.  I wasn't clinically depressed, I was just suffering some major losses.  She turned it into a mental disease.  It's a terrible thing to do, to put someone who is feeling a little blue on something so strong, mood-altering and almost impossible to come off of.  I would never condone the use of these drugs for anyone, unless they were a danger to themselves or others without them.  A good therapist can get you through tough times and they have only positive side effects.

Lorie
San Diego

» SCARLETT

I've dealt with symptoms of anxiety and depression on and off throughout my life since I was about seven years old. When I started college a little over three years ago, my anxiety and depression got worse; probably a result of the increased stress of college. I finally decided to start taking an anti-depressant, and it was helpful for a while. Later on, though, after doing some research, I started thinking that I could possibly also have ADD. I mentioned this to my school psychiatrist, but she told me that in her opinion, she did not think I had ADD. After quite a while of trying to explain myself and feeling like she wasn't listening, I got tested by an outside psychologist who confirmed that ADD was highly possible and I then saw a different psychiatrist.

My first visit with the new psychiatrist lasted what seemed like maybe 20 minutes at the most. She then prescribed Strattera- a newer, non-stimulant medication for ADHD- in addition to the Zoloft that I was already taking. I don't know if this was a side effect from the Strattera or not, but all I know is that after a few weeks of being on it I started to have crying spells that were much more intense than ever before. Rather than considering a possible this as side-effect, the psychiatrist thought my depression was just getting worse, and she raised my dosage of Zoloft. Eventually, after I told her I didn't think the Strattera was working, she instead prescribed a stimulant medication called Vyvanse, which is basically a newer, supposedly "better" version of Ritalin.

For the first 2 weeks or so, I felt great on Vyvanse...happier. I asked my psychiatrist if it was normal to feel happier on a stimulant, and she said yes, because, I'm "more stimulated". Looking back, that answer doesn't really make sense to me. After those first couple of weeks, I didn't feel much from the Vyvanse except that my mood started to feel lower towards the end of the day (probably as it was wearing off).

The problems came over the summer. After school ended, I felt like there wasn't any reason I needed to continue taking the Vyvanse (since I was taking it to help me get through my school work). So I just stopped taking it. Never once did my psychiatrist warn me against this. I was taking a low-dosage of the stimulant, so the common medical belief is that you should be able to stop taking it cold-turkey without any withdrawal effect. It is not believed to cause the same withdrawal as stopping an anti-depressant cold-turkey.

Well I was fine for the first four days or so after I stopped taking it. After that, crying became very common. I'd end up crying as I was in the shower, in bed, sitting on the floor in my room, while driving. I looked up withdrawal symptoms from psychotropic medications online, and became terrified when I read that I couldn't't just start taking the medication again to feel better (because doing this could make you feel even worse). I didn't't know what to do. I felt awful, irritable, and I started snapping at my family- which really made me feel ashamed of myself. I called my psychiatrist around 2 AM one morning and left a message, feeling desperate and not knowing what else to do. The message was normal, just at an odd time.

The receptionist called me back the next afternoon and told me that my psychiatrist said I should go to the Emergency Room. I told her I felt that was overly dramatic and that I just wanted to know what to do to feel better. I asked her why I would have to go to the ER, and she just emphasized that I was having a withdrawal.

I went to the ER feeling embarrassed, and after being there for a long time, one of the doctors called my psychiatrist and then told me that I should start taking the Vyvanse again. The doctor told me that my psychiatrist wanted me to go to the ER to make sure that I wasn't suicidal. I had never given her the slightest indication that I was. I had just wanted to know how to feel better. I was frustrated that I could not have just been told to start taking the medication again over the phone, rather than being ordered to go to the ER and spend a bunch of money. Oh, and the doctor at the ER told me that I was not experiencing a withdrawal, but just an "effect of not taking the medication". I'm still not sure what the difference is. The next time I saw my psychiatrist, she told me that she had no idea why I had the reaction that I had. She then took me back off the Vyvanse and prescribed a mood-stabilizer instead. (It gave me an allergic rash the first day I took it, so I did not continue to take it, but that's another story)

Scarlett
Woodland Hills

» ELLEN

I guess it all actually started with something pretty good, a trip to Ireland for a writing class. I was really really really looking forward to it. Going to Ireland had always been a dream and all. Unfortunately, I caught some kind of mutant stomach virus at the Atlanta Airport. I was horribly sick for half of the trip. Eventually, I began to feel slightly better. Good enough to get off the floor and actually do stuff. I had fun after that, but I was really glad to finally get home. But it didn't end there. I came home from college to a home that had changed. I had never had a very good relationship with my father, and things all of a sudden were spiraling out of control. I was still weak from being sick, and it seemed as if all the armor that I had built up to deal with his emotional and verbal abuse had fallen away. I felt persecuted, and there was no place to hide. Eventually I began to feel hopeless. There was nothing I could do to protect myself, so I stopped doing anything at all. I slept all the time. And then the stomach virus symptoms came back. Finally, I was taken to the doctor. She drew blood to test whether or not I had a stomach infection. It came back negative, and she asked me if I was depressed. I said yes, and off to the psychologist I went. The talking actually helped. Maybe the medication did too, Lexapro. I don't know... Things slowly got better, and my stomach problems seemed to lessen. My psychologist told me that the stomach problems were a symptom of me being depressed. I convinced myself that it was mostly all in my head. I repeated it so many times... But it really did hurt. Finally, they did an endoscopy. The original blood work that the doctor had done was a false-positive. I had had a bacterial stomach infection for two and a half years. After a barrage of heavy antibiotics that left me physically sick and helpless for two weeks, I felt so much better. I had been sick for so long, and now I was better. I could eat my favorite foods again. I could sleep without a trashcan next to the bed... My psychologist suggested that I stop taking the Lexapro. Luckily for me, my mom is a pharmacist, so I had some idea of what to expect, but no idea of the sheer scope. Within twelve hours of going off I was so dizzy. I couldn't turn my head without feeling faint. Around the time I started to drool on myself my mom popped the Lexapro into my mouth made me swallow. I'm still on it. I don't think I "need" it anymore, but I do need it. If I accidentally forget to take it, by the next day I'm dizzy. I can't drive when it happens. It's terrifying. Once I was babysitting and realized I had forgotten to take it. Luckily I was able to get home before it got too bad, but what if I hadn't? What if I had somehow hurt those children, just because I forgot to pop a pill? I'm scared. Scared to keep taking it, and scared that if don't the depression will come back. What to do...

Ellen
Kentucky

» RUTH

I have not experienced mental illness first hand. Rather, I am the mother of a son who was diagnosed "schizophrenic" six years ago at the age of 19. Somewhere along the way, I decided that while this is an experience I would wish on no one (see footnote below), it was one of the most interesting things that had happened to me. Hopefully, he will view his experience in the same light one day. Therefore, I began to document (from a mother's perspective), his experiences with conventional psychiatric programs and my search for alternative therapies for him.

Here is what I learned:

1. I learned to think of all psychiatrists (even the ones who are the most helpful to my son) as a "necessary evil", like bankers and lawyers. The less you have to do with them the better. If you need their services, find one who works for you and not against you.
2. I learned that the drugs were useless in his case. Damn hard to get off of, though. It took one year to get him off 25 mg of clozapine.
3. I learned to hate his conventional day program where he spent two years of his life and still wasn't "fixed" by the time he finished. The program treated everybody like an apple, when my son was probably an orange or a pear. They all got the same therapies (cooking, art), little psychotherapy, and were put on the same medications despite the fact that their problems were unique to them.
4. I learned that even the vitamin/supplement approach has a tyranny all its own. Think about it. Dr Abram Hoffer claimed an 80% cure rate by using no more than five vitamin and mineral supplements (niacin, vitamin C, a B complex, zinc and later on omega 3). He didn't even recommend a change of diet. My son takes 35 different state of the art supplements a day, in liquid and pill form. He has been told to avoid all kinds of foods that the rest of us enjoy eating. The cost of doing this is staggering and of course, not covered by insurance. He has been doing this for three years now.
5. I have learned that mental illness is not solely a matter of getting the biochemistry right, even if it is done with supplements. There is a huge "mental" component to this. Having observed my son and done my own homework, I see the condition as very similar to "acting". Shakespeare wrote "There is method in his madness". This is a hugely controversial thing to say, but I stand by it. Psychosis to me is a convenient escape hatch. I totally agree with R.D. Laing when he writes: "A good deal of schizophrenia is simply nonsense, red-herring speech, prolonged filibustering to throw dangerous people off the scent, to create boredom and futility in others. The schizophrenic is often making a fool of himself and the doctor. He is playing at being mad to avoid at all costs the possibility of being held responsible for a single coherent idea or intention." Recently I have started to call my son on his avoidance and it seems to be working.
6. I believe that schizophrenia has a cause (actually more than one), and it behooves me to find it if my son can't see the forest for the trees. I have noticed that he can be talked through psychosis without resorting to medication. Of course, at first, the thought was scary and preposterous to me, but as time went on and we began to see some progress with my son, it was easier to try it when the occasion called for it. Recently, he was experiencing what looked like a return of psychosis after being off the medication for almost a year. We were fortunate in that his holistic psychiatrist was adamantly opposed to putting him back on medication. This means that for a while I was functioning almost like his full time psychiatric nurse. I found that when I firmly held him responsible for, e.g. uttering incoherent thoughts (wasting our time in essence) he was fully capable of righting himself in a short period of time. This experience taught me that schizophrenia, even in its psychotic state, could be managed without drugs, with empathy, and without my being sucked into it.
7. To sum it up, schizophrenia to me is a definitely a problem, but by no means a medical disease. I agree with social worker Jacqui Schiff, that the schizophrenic missed some critical aspects of childhood development. It would have been much easier all around if my son went through his terrible twos (he never did) rather than his terrible twenties. Better late than never.

Ruth

Footnote: Actually, I entertain fantasies that a psychiatrist should have a schizophrenic offspring before being qualified to tell others how to handle it.