Editorial Note: Over two years ago we posted Antidepressant Withdrawal: V’s story. It has close to 100 comments making it one of the topics that has attracted the most interest. Right now the New York Times is running a series on Breaking up with my Meds that is attracting a lot of comment. This is a hot button issue with many people desperate to get off antidepressants and others who appear to think anyone who wants to get off must be mad.
This post is an extraordinary piece of writing about the difficulties in stopping. Nine out of ten people now taking antidepressants are on them chronically – most of these are on them because they can’t get off. This makes clear what the problem is.
I’m still not sure I understand what happened to me.
I was prescribed Prozac in 1988 to treat bulimia. Started at 20 mg, then up to 60 mg in a couple of weeks. I had never had a depressive episode, had never been anxious. I recall very little about this other than the psychiatrist telling me than he preferred Prozac to the available MAOIs because it had less side effects, no diet restrictions, and that some people had lost weight while taking it, which of course appealed to me. I vaguely recall feeling jittery when I first started, but it was a sort of energized jittery which I didn’t mind and may have even liked.
As far as dates when I attempted to stop taking the drug, I’m not sure. I do know that I reinstated a few times after being told by my GP or psychiatrist that the problems I was having was the re-emergence of depression, and then more recently, the emergence of an anxiety disorder. (sigh)
I’ll start with why I believe it happened.
I was doing very well holding at 9 mg of Prozac and tapering Wellbutrin rather quickly. What I didn’t know at the time was the Wellbutrin effects an increase in plasma concentrations of SSRIs. So even though I was only ingesting 9mg of Prozac a day, the increased concentration of the drug made it seem as though there was much more in my body. How much I don’t know. This means I was inadvertently tapering the Prozac along with the Wellbutrin. This may not have been so terrible if I hadn’t tapered the Wellbutrin so quickly. Because of prozac’s long half-life, which was being lengthened by the addition of the Wellbutrin, the effects of the quick drops didn’t hit immediately. I still felt fine after I was done tapering the Wellbutrin so I decided to begin my Prozac taper pretty quickly after that.
Descent to Hell
It was several weeks after that that things started spinning out of control and I crashed into some horrible state I can only think of as hell.
It began with irritability and me being easily frustrated. Anxiety became an issue. As time went on the anxiety became increasingly bad and longer lasting until I felt overwhelmed with anxious and hopeless thoughts.
It became difficult to focus or sit still. I was unable to concentrate and began to feel agitated.
Fatigue set in. It too worsened and became exhaustion. I had this constant feeling of wanting to sleep but being unable to. I would get out of bed, or stand up, or whatever and within less than 30 seconds felt this incredible need to lay down. It was like I kept thinking, “if I could just sleep for an hour I would feel okay.” Except if I was able to fall asleep, I wouldn’t feel better, but generally I was unable to fall asleep. This exhaustion and overwhelming desire to lay down culminated in my inability to get off the couch. Or more, my total lack of desire to get off the couch. All motivation had vanished. I would just lay on the couch watching TV and constantly checking the time.
My anxiety continued to get worse and the things that had been worrying me previously (real things) began to become overwhelming. I would ruminate and ruminate and not be able to stop worrying and thinking about them. No matter how they played out in my head the end was always catastrophic. Hopeless.
I had never had insomnia until this. While I could fall asleep, I would be awoken at 2am by dread, panic and those horrible ruminations. I might doze off, but then around 4am I’d get jolted awake again. I felt like I was losing my mind some nights, between not being able to sleep, the panicked feeling, the noise sensitivity…
A psychiatrist prescribed Klonopin to help with sleep. It helped slightly, but it also seemed to make my waking anxiety worse, so I stopped.
Melatonin made me more dopey the next day. My vision became blurry. It was as if I had a film over my eyes that no matter how hard I tried I couldn’t rub off.
Sometimes I felt like I had to really concentrate to talk.
I struggled with self-doubt, and shame like I had never.
My brain felt like it was working more slowly and I had what I can only think to describe as ‘brain-fog.’
Akathisia and muscle tension came next. It was mostly in my shoulders, neck and upper back. I felt like I had to twist, arch my back, or contort my body for relief, but in reality I couldn’t get relief from it. It seemed to become less severe in my upper-back and shoulders over time, but then seemed to settle into the right side of my body from my neck all the way down to my knee.
Stranger still was this feeling of numbness and weakness in my right leg, only it wasn’t numb and I don’t think it was weak, it just felt like it was. I began to think I had had a stroke. I was terrified. To be honest, my description here doesn’t do what I was feeling justice. It was simply horrific and scary.
At some point I developed muscle spasms/twitching. It would happen at various parts of my body. I had had this before as I was tapering earlier, but it was infrequent and mild, and I had expected it after reading other people’s posts. This was frequent, the spasms stronger, and like I said, occurred over multiple areas of my body.
I became hypersensitive to light and sound. It was always worse when I woke up at 2am and 4 am. I began sleeping with the TV on and earphones in because at least that was a constant sound, and would sometimes be effective in distracting me from my ruminations. I would bury my head in the pillow if I could hear noise beyond the earphones and began wearing a sleep mask, which helped, but I began dreading having to take it off.
My complete lack of motivation to move from the couch also meant that I felt no motivation or desire to shower. It’s not that I didn’t want to or felt that it would be too hard or take too much energy. I just didn’t have any desire to take a shower. It didn’t matter. I also all but stopped eating. Sometimes I would eat something because my stomach felt off or was making crazy noises and I thought it would help. I lost a significant amount of weight and muscle during this whole thing. I didn’t drop to an unhealthy weight, but I stopped getting my period. My menstrual cycle had functioned like clockwork for the previous 33 years.
There were 3 or 4 nights when I suffered horrible stomach pains and loud churning from my stomach. Sometimes severe enough to wake me if I’d fallen asleep.
I often had diarrhea.
I wanted to die. I would wish for a terminal illness to kill me. I thought about suicide but never really had intent, or guilt over the problems it would cause for loved ones would dissuade me. I just saw my life unraveling with no hope in sight.
Anhedonia became severe for several weeks. I almost can’t explain it.
Except once during this whole thing when I was verbalizing a wish to die, I never cried. I never even really felt sad. Sure I had these horrible distressing, catastrophic thoughts about the same three things over and over, but I never felt depressed, per se. I felt dread and numb at the same time but didn’t feel much else.
My body temperature would fluctuate, or it felt like it would. There were times when I would have hot flashes, then other times when I felt like I couldn’t get warm, particularly in the morning. Combined with not getting my period I thought I might have entered menopause. I hadn’t.
I woke up nearly every morning during this with shaking and trembling in my arms. They would shake and feel weak, particularly if there was any kind of physical exertion. Even minor. This morning trembling lasted for weeks after reinstatement and I will still on occasion experience it, albeit at a lower level.
One thing which I still find strange is the fact that all these horrible symptoms, even on the worst days, would begin to subside in the late afternoon and by 5 or 6 pm I would feel almost ‘normal’. It sounds impossible, but it’s true, and it was one of the reasons I dreaded going to sleep at night. I didn’t want the feeling to go away and I knew it would and that the horror show would start all over again within a few hours of me falling asleep.
I went to see my primary care physician several times during this. I had blood tests hoping that something would reveal why I was so freaking tired! I was tested for Lyme disease, hormones, electrolytes, mono… everything came back fine.
I attempted to reinstate Wellbutrin, hoping that would help. I craved the stimulation it gave me. I thought it might pull me out of this unrelenting fatigue. But it exacerbated everything within hours of taking it. Plus the idea of having to go through the process of dissolving it, etc. just seemed too overwhelming. I didn’t take it again.
An initial reinstatement of 10 mg of Prozac initially made my symptoms worse. The akathisia, anxiety, and muscle tension would become worse within about a half-hour of taking it. But I had been told that I would feel badly in the beginning. Worse before I would feel better so I stuck it out. I didn’t feel better after about 2 weeks, or didn’t think I did. Looking back the ruminating became much less severe and I think I may have even been sleeping better.
Feeling that the 10 mg wasn’t working I was advised to bump to 20mg. I then began to feel some relief from most of the symptoms. But I was impatient now and when I felt any improvement had stalled out after a week I bumped to 30mg. I began to feel improvements in 24 hours. After about 3 weeks at 30 mg I knew I had “survived” whatever it was that had happened to me.
The symptoms I describe above almost completely resolved. However, as time has passed some of the side effects from taking Fluoxetine re-emerged.
Currently on 30 mg I sleep okay. I sometimes wake around 4 am but I’m not panicked. Just tired and have difficulty falling back asleep. There are some mornings when I wake with some minor anxiety or I still feel like my arms are shaky with what I think is mild Akathisia. This is usually remedied by exercise.
Although initially I felt fine, there has been some return of the underlying fatigue and yawning I had experienced while taking Fluoxetine and for which I had taken Wellbutrin to remedy after a failed attempt to discontinue in 2012. My ability to tolerate stress is weaker now than it had been and there has been some emotional numbing. I am hungry a lot and have put on weight beyond what I had lost during what I now refer to as “my crash.” I have some minor GI issues, which I had experienced as a side effect before. Ah yes, and night sweats. Sometimes I wake up in the middle of the night and have to change my sleep clothes and put a towel down on the bed where I’d been laying.
I developed mild psoriasis during my attempt to withdrawal in 2011/12. I didn’t have a recurrence of it once I dropped to 10mg of Prozac nor during the throws of this recent crash of mine. It has re-emerged now that I’m at 30 mg.
Also, I am now functioning at my baseline. I am again able to work on the time sensitive “project” that I was unable to and which was the root of much of my ruminating. I am back at the gym 5-6 days a week, and except for a day or two prior to my menstrual cycle (which now happens again) I don’t feel any urge to nap, even with the underlying, mild fatigue.
It felt like my life had stopped and almost like I am now missing those three months of my life. I consider the experience a trauma and believe I struggled with some kind of posttraumatic response. Once I was feeling better I would talk about what happened to me incessantly and searched the internet obsessively looking for answers. I still talk about it too much, even in therapy, which I enrolled in, to deal with withdrawal and the after effects. It haunts me. It angers me. It scares me.
I intend to try and taper again. At least get to 20 mg and hold there for a while. There’s a part of me that fears that I will never be able to successfully wean from Fluoxetine, and that if I do I will end up a lifeless blob on my sofa, unable to work or care for myself and dependent on a disability check. At the same time I fear what my brain will be like in 10, 20 or 30 years if I don’t get off this drug.
Sometimes I wish I could sue the makers of Prozac and generic Fluoxetine. Sure, I would include financial compensation, but mostly I would want that these companies be court ordered to conduct and make public research on long-term users of their drugs, to research and publish findings regarding treatment for withdrawal. Not just a study here or there, but court ordered to invest hundreds of millions of dollars into investigations.
Unfortunately, I think I would have to hold at least some of the doctors that prescribed me Prozac or Fluoxetine responsible. I would be torn there. On the one hand I suspect they were naïve and didn’t question the pharmaceutical reps or the information they provided. On the other hand, now that I’ve reviewed the literature I can see that research findings regarding side effects and withdrawal, and other concerns have been available for decades.
I can’t say that I think these drugs should be banned or recalled, because I know there are people that do well with them and their lives perhaps even saved by them, but prescription practices must include full disclosure of the risks, and potential for dependence and severe withdrawal without minimization.
See the Guide to Stopping Antidepressants from RxISK’s Medical Team.