Kiosk
He Thinks He's People
- Joined
- Oct 1, 2007
- Messages
- 349
OK, I'm going to be very careful how I phrase this. For the record: I'm not an anti-psychiatry kook, I don't harbour any unrealistic paranoia about "Big Pharma" and I also don't have any underlying mental or physical illness about which I'm in denial. Furthermore, I'm not trying to use the JREF forums as a support group - this is just an appeal for some expert opinions on something which has happened to me, and scared me half to death. I'm looking for science rather than sympathy.
I began taking SSRIs in my mid twenties. I'd suffered from chronic mild-to-moderate depression for many years, had recently entered a particularly bad spell, and decided I needed help. The meds worked beautifully, no serious side-effects, and when I finished the six-month course I got the regulation two weeks of withdrawals (dizziness, derealisation, nausea and those stabbing electric shock sensations in the head, known to SSRI veterans as "zaps"), then went back to normal. Nothing out of the ordinary so far.
Less than a year later, I felt lousy again and decided to try an antidepressant long-term. This was the late 90s, and "maintenance treatment" with SSRIs had begun to be touted as the new hope for sufferers, so I got on the train. This time I was put on sertraline, alias Zoloft / Lustral (the doc had originally prescribed Effexor, but I felt so unstable on that particular medication that we decided to try a different one). 50mg of sertraline a day, then - equivalent to 20mg of Paxil or Prozac, or (I think) 10mg of Lexapro. It didn't work quite so well as my first go on antidepressants, but I definitely felt better than I did drug-free, so I stuck with it.
Four years later, the stuff didn't seem to be doing anything much anymore (except making orgasm rather troublesome), so I went back to the doctor, who suggested increasing the dose to 100mg of sertraline daily. Within two days of the dosage increase I felt better than I've ever felt in my life - what I now recognise as hypomania. Bouncing up and down on my bed doing star jumps at 3 in the afternoon because I felt so fantastic, etc. This is quite scary looking back (I've never, ever been diagnosed as bipolar, nor even displayed symptoms), but at the time it felt like a line of cocaine from which you never come down, and after the drudgery of depression it was fine with me. The hypomania settled down after a month or so, and I was back to the normal medicated version of myself - managing ok, depression more or less under control. So it went for another five years.
Then it started to wear off. Suddenly I felt more depressed than I'd ever been, and one or two of the med side effects had been getting noticeably worse, so I made the decision to wean off and try flying solo for a while, thinking I could always try another antidepressant if things were unbearable. Reduced my dose very gradually, as was now recommended by doctors. Unfortunately, rather than going back to normal, I went somewhere new and extremely frightening. I stuck it out, thinking it was just a rough withdrawal, but when I was still getting worse three months after being off all medication, to the point where I had to stop work, I knew something was seriously wrong.
The depression had reached monstrous proportions, way beyond anything I'd experienced before - still, there were plenty of possible explanations for that. What was harder to explain was why I now had a raging anxiety disorder, when I'd never suffered from anxiety in the past. This was shaking, eye-bulging, can't-leave-the-house anxiety, rootless and all-encompassing like a bad drug experience, without a break. What's more, I was experiencing near-psychotic derealisation, and was in a state of almost constant rage (I even got arrested for smashing a bottle of wine in the supermarket, an experience I don't even remember). Now sure, I was always a depressive, but very much the "stay at home and stare at the wall contemplating the futility of it all" type. This kind of raging mental illness was something completely new. I found myself waking up in the morning longing to die. I was crying hysterically at almost everything (and I've never been the type to cry at anything). I found that I could no longer spell correctly, and my reading comprehension level went down to near-zero. I tried to restart an SSRI, but within an hour of taking it I had a full-blown panic attack, and after the next day's dose I found myself smashing my head off the wall because I thought it was going to explode... so I stopped taking that immediately. And now I was stuck.
What makes this weirder are the physical symptoms. I lost two stone in weight (about 25 lbs) in six weeks, and during the same time period, my hair went Randi White at the sides, and began falling out in clumps at the top (I was 34). I could barely walk, the pain in my knee joints was so intense. My hands and feet went numb and ice cold several times a day, and I was also getting periodic numbness down the left side of my face. My sexual function was destroyed. All the veins on my arms and legs suddenly stood out like mooring rope, and stayed that way for months. I experienced constant tachycardia. All of these can, of course, be symptoms of extreme anxiety - something I have noted with interest - but they didn't seem to wax and wane in time with my anxiety. I saw various doctors, got checked out, and the same thing came back from all of them - you're clearly very ill and you do indeed have these symptoms, but we can't find anything specifically wrong with you. Why don't you go back on the antidepressants? I wanted to, but I was terrified. By four or five months off the pills, I'd stabilised to the point where I could just about function, but I was still in a very frightening place indeed.
It was around then, while Googling for further information, that I found discussion groups online full of people who were suffering something eerily similar. Everything I'd experienced was there. Even after I'd screened each website and weeded out those that were just some sort of front for quackery or Scientology, the facts were unavoidable. There were thousands of people out there, posting about their version of protracted withdrawal, the same stuff coming up over and over again. There were people who'd recovered after six months, and people who were still in the thick of it after three years. Some people's posts suggested they should probably never have come off their meds in the first place, but most were from ordinary suburban moms or stressed college students, many of whom had (incredibly) originally been prescribed these pills for insomnia or IBS - only to come out the other side in hell. I hung around long enough to convince myself this wasn't some elaborate hoax. These places were useful for validation and reassurance in that early period, but they weren't always happy places for a sceptic to hang out - a ton of woo in evidence ("have you tried homeopathy? It's natural"), a lot of pseudoscientific ranting (anger at SSRIs exploding into paranoiac resentment of "Big Pharma"), a very strong religious undercurrent on the American forums in particular (understandable among people of faith who are suffering horribly, but pretty sick-making to an atheist whose belief in the human "soul" as neurochemical in nature had just been rather strongly confirmed by having his "soul" turned inside out through a subtle rearranging of his neurochemistry). Some of the places offered proper peer-reviewed scientific papers on SSRI withdrawal for download, and while these were occasionally intriguing, they only really focused on the initial month following discontinuation, and were generally inconclusive. In most cases, the abstract could be summarised as "we took 15 people off their meds, 10 of them felt worse, 5 of those were really really sick, so we put them back on their meds and everything was alright again. We suspect this had something to do with the downregulation of seratonin receptors, but more research is needed."
This is why I'm asking if anyone here knows enough about neurology or psychopharmacology to offer some opinions on just what the hell is going on. It's now almost exactly two years since I stopped the pills, and while I've been gradually improving, I'm still a complete mess - I still can't work, and there are certain symptoms which are not getting any better at all, and are effectively ruining my life - and I'd really, really like to at least understand what could be happening. All I can find, aside from those papers mentioned above, is denial or woo. There are a few reputable psychiatrists who acknowledge long term problems after SSRI use (Joseph Glenmullen, David Healy etc) but they focus more on the fact that this happens, rather than why it happens or what can be done about it. Perhaps one of the more educated folk here could give me their two cents.
And I know I said I wasn't going to use JREF as a support group - but while you're at it, some general advice would be nice, as I'm way too deep in this to think about it objectively. Would I be more of an idiot to bite the bullet and try an SSRI again (and live with the terror of having to come off it again at some point in the future), or more of an idiot to just sit here for another two years waiting to miraculously "get better"? Life right now is close to unbearable, but I worry that the alternative could be even worse. What the hell is going on?
I began taking SSRIs in my mid twenties. I'd suffered from chronic mild-to-moderate depression for many years, had recently entered a particularly bad spell, and decided I needed help. The meds worked beautifully, no serious side-effects, and when I finished the six-month course I got the regulation two weeks of withdrawals (dizziness, derealisation, nausea and those stabbing electric shock sensations in the head, known to SSRI veterans as "zaps"), then went back to normal. Nothing out of the ordinary so far.
Less than a year later, I felt lousy again and decided to try an antidepressant long-term. This was the late 90s, and "maintenance treatment" with SSRIs had begun to be touted as the new hope for sufferers, so I got on the train. This time I was put on sertraline, alias Zoloft / Lustral (the doc had originally prescribed Effexor, but I felt so unstable on that particular medication that we decided to try a different one). 50mg of sertraline a day, then - equivalent to 20mg of Paxil or Prozac, or (I think) 10mg of Lexapro. It didn't work quite so well as my first go on antidepressants, but I definitely felt better than I did drug-free, so I stuck with it.
Four years later, the stuff didn't seem to be doing anything much anymore (except making orgasm rather troublesome), so I went back to the doctor, who suggested increasing the dose to 100mg of sertraline daily. Within two days of the dosage increase I felt better than I've ever felt in my life - what I now recognise as hypomania. Bouncing up and down on my bed doing star jumps at 3 in the afternoon because I felt so fantastic, etc. This is quite scary looking back (I've never, ever been diagnosed as bipolar, nor even displayed symptoms), but at the time it felt like a line of cocaine from which you never come down, and after the drudgery of depression it was fine with me. The hypomania settled down after a month or so, and I was back to the normal medicated version of myself - managing ok, depression more or less under control. So it went for another five years.
Then it started to wear off. Suddenly I felt more depressed than I'd ever been, and one or two of the med side effects had been getting noticeably worse, so I made the decision to wean off and try flying solo for a while, thinking I could always try another antidepressant if things were unbearable. Reduced my dose very gradually, as was now recommended by doctors. Unfortunately, rather than going back to normal, I went somewhere new and extremely frightening. I stuck it out, thinking it was just a rough withdrawal, but when I was still getting worse three months after being off all medication, to the point where I had to stop work, I knew something was seriously wrong.
The depression had reached monstrous proportions, way beyond anything I'd experienced before - still, there were plenty of possible explanations for that. What was harder to explain was why I now had a raging anxiety disorder, when I'd never suffered from anxiety in the past. This was shaking, eye-bulging, can't-leave-the-house anxiety, rootless and all-encompassing like a bad drug experience, without a break. What's more, I was experiencing near-psychotic derealisation, and was in a state of almost constant rage (I even got arrested for smashing a bottle of wine in the supermarket, an experience I don't even remember). Now sure, I was always a depressive, but very much the "stay at home and stare at the wall contemplating the futility of it all" type. This kind of raging mental illness was something completely new. I found myself waking up in the morning longing to die. I was crying hysterically at almost everything (and I've never been the type to cry at anything). I found that I could no longer spell correctly, and my reading comprehension level went down to near-zero. I tried to restart an SSRI, but within an hour of taking it I had a full-blown panic attack, and after the next day's dose I found myself smashing my head off the wall because I thought it was going to explode... so I stopped taking that immediately. And now I was stuck.
What makes this weirder are the physical symptoms. I lost two stone in weight (about 25 lbs) in six weeks, and during the same time period, my hair went Randi White at the sides, and began falling out in clumps at the top (I was 34). I could barely walk, the pain in my knee joints was so intense. My hands and feet went numb and ice cold several times a day, and I was also getting periodic numbness down the left side of my face. My sexual function was destroyed. All the veins on my arms and legs suddenly stood out like mooring rope, and stayed that way for months. I experienced constant tachycardia. All of these can, of course, be symptoms of extreme anxiety - something I have noted with interest - but they didn't seem to wax and wane in time with my anxiety. I saw various doctors, got checked out, and the same thing came back from all of them - you're clearly very ill and you do indeed have these symptoms, but we can't find anything specifically wrong with you. Why don't you go back on the antidepressants? I wanted to, but I was terrified. By four or five months off the pills, I'd stabilised to the point where I could just about function, but I was still in a very frightening place indeed.
It was around then, while Googling for further information, that I found discussion groups online full of people who were suffering something eerily similar. Everything I'd experienced was there. Even after I'd screened each website and weeded out those that were just some sort of front for quackery or Scientology, the facts were unavoidable. There were thousands of people out there, posting about their version of protracted withdrawal, the same stuff coming up over and over again. There were people who'd recovered after six months, and people who were still in the thick of it after three years. Some people's posts suggested they should probably never have come off their meds in the first place, but most were from ordinary suburban moms or stressed college students, many of whom had (incredibly) originally been prescribed these pills for insomnia or IBS - only to come out the other side in hell. I hung around long enough to convince myself this wasn't some elaborate hoax. These places were useful for validation and reassurance in that early period, but they weren't always happy places for a sceptic to hang out - a ton of woo in evidence ("have you tried homeopathy? It's natural"), a lot of pseudoscientific ranting (anger at SSRIs exploding into paranoiac resentment of "Big Pharma"), a very strong religious undercurrent on the American forums in particular (understandable among people of faith who are suffering horribly, but pretty sick-making to an atheist whose belief in the human "soul" as neurochemical in nature had just been rather strongly confirmed by having his "soul" turned inside out through a subtle rearranging of his neurochemistry). Some of the places offered proper peer-reviewed scientific papers on SSRI withdrawal for download, and while these were occasionally intriguing, they only really focused on the initial month following discontinuation, and were generally inconclusive. In most cases, the abstract could be summarised as "we took 15 people off their meds, 10 of them felt worse, 5 of those were really really sick, so we put them back on their meds and everything was alright again. We suspect this had something to do with the downregulation of seratonin receptors, but more research is needed."
This is why I'm asking if anyone here knows enough about neurology or psychopharmacology to offer some opinions on just what the hell is going on. It's now almost exactly two years since I stopped the pills, and while I've been gradually improving, I'm still a complete mess - I still can't work, and there are certain symptoms which are not getting any better at all, and are effectively ruining my life - and I'd really, really like to at least understand what could be happening. All I can find, aside from those papers mentioned above, is denial or woo. There are a few reputable psychiatrists who acknowledge long term problems after SSRI use (Joseph Glenmullen, David Healy etc) but they focus more on the fact that this happens, rather than why it happens or what can be done about it. Perhaps one of the more educated folk here could give me their two cents.
And I know I said I wasn't going to use JREF as a support group - but while you're at it, some general advice would be nice, as I'm way too deep in this to think about it objectively. Would I be more of an idiot to bite the bullet and try an SSRI again (and live with the terror of having to come off it again at some point in the future), or more of an idiot to just sit here for another two years waiting to miraculously "get better"? Life right now is close to unbearable, but I worry that the alternative could be even worse. What the hell is going on?
