Alice wrote:

I was wondering, is it possible that going off 30mg of Paxil cold turkey may have affected me neurologically?

My response:

Yes, it may have affected you neurologically, and I often wonder the same thing, whether my cold turkey experience caused permanent neurological damage. And, despite my optimism at times, I don’t really know the answer to that question.

I have been off Paxil since November, but I am still feeling the effects of the withdrawal. Maybe the cold turkey withdrawal did cause permanent damage of some kind. I’m not sure. I can only wait and see how things go. My body and my mind have gradually been readjusting to being Paxil-free, but, for me, the adjustment is still going on, so I’m not able to say how permanent any of the damage is yet.

I can’t judge my level of anxiety or my mental state too well right now either because there’s nothing about my present situation which is socially normal. In February I tried to get back into the real world and find a job, etc., but I got hit with extremely bad headaches for a month before I finally had to come back to where I am now, out in the middle of nowhere, sitting around doing nothing, feeling useless.

My problem hasn’t been anxiety, per se. What I’ve been experiencing is extreme muscle tension, especially in my head and neck, but not exclusive to my head and neck. If you know how to crack your knuckles — my whole body makes that sound. I’ve tried to describe this before, but I’m afraid of sounding like some guy who wears a tinfoil hat to keep the alien signals from penetrating his brain through the fillings in his teeth. When I describe this stuff, it seems as crazy to me as it does to anyone else. But imagine the sound of your knuckles cracking. I get that around my head. My head feels like it’s filled with wet cement. It’s not like the electrical shock sensations, but it’s not much better either.

And that’s what I’ve been dealing with since February. Although I will never take Paxil or anything like it again, I had to give in and take a heavy-duty muscle relaxant to help with my present condition. I don’t have headaches or hypersensitivity to light and sound anymore, but neither do I feel like a normal human being. It kind of gets to you after a while (my first withdrawal experience was last July).

For the past week I’ve been trying out some breathing and muscle-stretching exercises, even some meditation sort of stuff, and it seems to help although I’m not too good yet at sticking to it. I hate resorting to this sort of thing. It goes against the whole grain of my personality. Waking up every morning and meditating before I start my day? Give me a break. No offense to anyone who meditates, but it’s just never been my kind of thing.

But this is what it’s come down to for me. If I want to get on with my life, and get on with a good life, I have to change the way I live. No more bacon and eggs every morning for breakfast. Now it’s yogurt and a piece of fruit. That kind of crap. I feel like a schmuck. But that’s just my tough luck. I have to learn to eat healthier, live healthier (no booze, no cigarettes, no “recreational” drugs, no caffeine) — all that jazz. Next thing you know I’ll be wearing tie-dye shirts and playing “hacky-sack.”

So I have extreme muscle tension instead of “social anxiety.” Or maybe I have both. But whatever it is, it’s probably my body’s way of saying, “You can’t keep living the way you have.” And I know it’s the truth.

And I have never felt more lost than I do now. I don’t know what the hell I’m doing, what the hell I can do, or what the hell I’m going to do next. It’s like someone who’s been writing on a typewriter their whole life and then given no choice but to learn how to use the latest version of WordPerfect or MS-Word. Go under “File” and select “Save As” and all that crap. I just want to write! You know what I’m saying?

But to bang home again what I’m saying here, whether it’s post withdrawal anxiety or muscle tension — or migraine headaches, digestive problems, chronic fatigue, fibromyalgia, eczema, sleep disturbances, asthma, muscle spasms or any of the other stress-related ailments — I think the message is loud and clear: “You can’t keep living the way you have.”

The solution is not as simple as taking a little pill. It’s a new lifestyle. I have to pay closer attention to my needs. I have to take better care of myself now, and that requires a willingness, a commitment really, to change. And when you’re 31 years old and used to living a certain lifestyle that has worked well for you for many years, it’s like trying to learn a new language. That’s the closest thing to a theory I got going right now.

First response:

Thank you so much for writing down your experience. I’ve been completely off Paxil for a year, having withdrawn slowly. I started to feel the effects over a year ago and I’m still going through withdrawal. I was on 40mg for a year, so I don’t know how long it’s going to take, but I think we all have that familiar refrain running through our heads of: “I just want my life back.”

I was also thrilled to read your earlier description of how time seems to expand and contract as this stuff goes on in our bodies — that’s something I was talking about with my doctor and with my family… and it’s not really understood. It’s got to do with disassociation. And thank you also for making the connection with epilepsy — I’ve always thought it was me creating metaphors trying to understand a body going through war, but it may be more literal than I thought…

I am lucky to have a supportive family, but I still hold them to such high standards. We need to let go of expectations and just accept the love they are capable of. And my doctor, well, he initially thought the withdrawal was a depressive relapse, and now that a psycho-pharmacologist acknowledged — in what felt like a really blasé manner — that what I was going through was withdrawal and not relapse, my doctor is now telling me to stop focussing on it and start focussing on living. He worries that by writing and reading the postings on the Paxil withdrawal message boards that I am wallowing. I know better.

Thanks again for your site and your story!

Second response:

Thank you for telling your story.

I am a professional writer, but have been in the lion’s mouth too deeply to write as you have. To read your story pierced me with its awful familiarity, and gave me courage. Most of all, reading your words helped me not feel so insanely alone. You have made a friend in me, and although you may not know it, I am sending you the good thoughts of one who is struggling for some kind of faith in this Paxil purgatory.

Basically, we are more or less “contemporaries” in our Paxil experience. I am just short of one month off the poison. I started taking Paxil in February 1999, and it bruised me from the start. I went through my first withdrawal in August/September 1999, but since my shrink had said nothing about problems I might encounter, I thought it was a nervous breakdown. I then tried to taper last summer which was aborted and then another doctor ramped me up to 45mg.

This January 1st I began a slow tape. I’m now using Trazodone, Valium, and Xanax to manage the “fresh hell” which greets me each day.

Your story touched me to the core. I admire your strength in even being able to write your story. Also, I think you’re a damn good writer.

I have a brave knight of a husband, and several stalwart friends, not to mention a fine psychiatric nurse, all of whom have helped hold me up. But I have no one in my life who has experienced this GlaxoSmithKline hell; finding your site has been a real comfort. Your understanding that suffering can have meaning, and that one can not only survive, but live to tell the tale brings me to a better place. I could quote from your writing here, but I think you get the picture. Thank you.

My response:

I appreciate everything both of you had to say. I think it’s fair to say that I can relate to everything you shared in your messages about your withdrawal experience, and it’s always good to hear from other people who know what I’m talking about. I’ve been Paxil free since mid-November, and even though I’m am gradually getting better, I can still physically feel it in my head and my body that I’ve been through a major neurological and physiological trauma.

Trying to describe some of the post-withdrawal effects to people who haven’t experienced it — well, I just don’t do that anymore, because I don’t need people looking at me like I’m nuts. And I’m not sure if I blame them; it is so difficult to find the language to describe what this stuff is like that even our trusted medical professionals think we’re nuts when we give it a try.

Anyhow, we’re not nuts, and I’m glad you were able to relate to what I wrote on this blog. That’s the reason it’s here.

Thinking the worst was over, I began looking for work on February 16th, 2001, about three months after I got off Paxil. I began to take what I thought were the first steps towards living my life again. I still had a hypersensitivity to light and sound, but it didn’t seem to kick in until much later on in the day, usually somewhere between 7 and 8pm, which was manageable to me and which seemed to indicate the withdrawal effects were gradually working themselves out of my system.

Psychologically, the transition was more difficult than I thought it would be. Just being around people again in a normal social environment took some getting used to. I found myself feeling apprehensive, hesitant and less spontaneous than I was used to being. But after seven months of social isolation, I suppose this was understandable. Socially, I was feeling a little rusty, but I was confident that I’d be all right as soon as I could find a job, get into a routine and develop a normal structure of social relationships again, all that good stuff. I’d been in starting-from-scratch situations before and, although I had my down days, I knew I could get through it if I kept pushing myself.

The social adjustment wasn’t easy. Things were made even more difficult when I began having bad headaches after the first week. I now understand what people mean when they refer to a “pounding headache.” It was as if I could feel my heart pounding — but inside my head; it was a pulsating pain. I took every kind of headache pill to fight off the headaches, but nothing worked. As the headaches continued, the hypersensitivity began to set in earlier during the day until I was eventually hypersensitive all the time, twenty-four hours a day.

It was a sinking realization the day I said to myself, “It’s still not over.” The withdrawal seizures were over and done with, but my life still wasn’t mine. I was determined not to let this experience take away any more of my life, and so I tried to jump back on the horse the first chance I had. But that determination may have gotten the better of me.

I can’t say for certain, but I probably shouldn’t have pushed so hard so soon after my withdrawal. My body, physiologically, neurologically, was still in recovery and in need of healing. I don’t know what the hell I should have done (sitting around on my ass out in the country by myself was driving me crazy), but I probably should have given myself another month to take it easy, to give myself more time to heal instead of throwing myself into a situation that was more stressful than I anticipated. It’s as if I was trying to will my life back, but my body wouldn’t let me. Mind over matter, my ass.

The headaches and the hypersensitivity got so bad that I could barely function. Trying to put on a pleasant face during an interview or any kind of social interaction was — well, it wasn’t working. I couldn’t fake it. I was so physically miserable that my spirit couldn’t fight it anymore. And after a month or so of trying to walk it off, I had to give in to the damn withdrawal again. At this point I may have wanted to blow my brains out. I wasn’t exactly taking track and was having a hard time really giving a damn about anything anymore.

That was about two months ago as I write this. I’m taking a small dose of Xanax to help with the headaches, and although I can still feel a pounding in my head, it’s not killing me like it was before, and my hypersensitivity is gone. (But I don’t know how long I want to keep taking these pills.)

In the opening to her novel, Ordinary People, Judith Guest writes that to have a reason to get up in the morning, it is necessary to possess a guiding principle, a belief of some kind; even a bumper sticker will do. But I don’t know what the hell keeps me going anymore. I don’t know what my next move is. I’m still waiting around for the withdrawal to work itself out of my system, I guess.

I’m not so sure how high my confidence is flying right now, or even if it’s confidence that I’m lacking. Which leads me to a question of faith (not religion). This is a big one.

I’ll leave my final thoughts on that, though, for when we get to the end of this blog. Until then, what follows is a sample of how my post-withdrawal experience played itself out between February and July 2001. (July 2001 would be a year since my initial withdrawal experience.)

I was in complete control of my weaning off Paxil. My doctor was only there to supervise the process and to give me a prescription of Xanax when I needed it. He suggested I go down by 10mg, but I said no way. I had tried it cold turkey and it nearly killed me, and I knew whatever I did, I wasn’t going to rush it. So I went down by 5mg every two weeks or so, and it was a relatively smooth ride.

If your doctor had you go down by 10mg at a time, it’s probably because the “current medical literature” suggests that he do so. In other words, he’s just reading out of book. The book says do this and he does what the book tells him to do. But, unfortunately, those books don’t take into account individual variations — the fact that everyone is different.

Personally, I think a 10mg drop is always too much. It’s a guaranteed rough ride if you ask me.

If you just got down to zero after being at 10mg and you’re feeling dizzy, etc., I’d take 5mg for awhile, until you feel ready to go down to zero.

When I got down to zero, which was a few weeks ago now, many of the symptoms lingered, especially the dizziness and the electrical sensations. On the two or three days in which I couldn’t hack it, despite the Xanax, I took a tiny little piece of Paxil, and it helped. I’m sure I could have roughed it out, but allowing myself to take just a little bit made the journey a little more bearable. At no time did I go back to taking the Paxil every day, or become dependent on it again, and now that I’m completely off it, the road is still a bit rough, but I’m a thousand times better off now than when I was withdrawing from the Paxil.

Your doctor didn’t lower your dosage to 5mg probably, first of all, because GlaxoSmithKline doesn’t officially make a 5mg pill, which, in your doctor’s mind (and the minds of many other doctors) means that 5mg isn’t a therapeutic dose. So it probably doesn’t even enter his mind to prescribe 5mg daily. Secondly, your doctor most likely just doesn’t know any better.

If you think you should be on 5mg before going down to zero, do it.

I woke up this morning around 4:00am with a clarity of mind that I would describe as unusual. I’d fallen asleep in the living room/rec room while watching a TV show I had on tape. I picked myself up and walked to my bedroom. I didn’t go back to sleep right away though; it wasn’t in me.

I lay there wrapped in the blankets thinking. My body didn’t feel wide awake, but my mind was going on a ride. One thing would lead to another, and then another, and I’d say this went on for at least two or three hours.

There were so many thoughts — some to do with my own philosophy of things, arguing my way through it so I could clearly stand behind what I was saying. The thoughts were so clear and strong and well worked out that I doubt they will fade from my consciousness any time soon. I was able to find some peace in all of it. A peace of mind, and of heart and soul, that is hard to come by in the condition I’m in.

I’m down to about 2.5mg of Paxil a day, with at least 0.5mg of Xanax to take the edge off. I don’t know how I’m going to feel once I’m completely off the stuff.

Today is Tuesday. By this weekend I’m hoping to be off it completely. That won’t mean the end of the withdrawal. But that’ll be it for the pills.

I’m feeling better today. I was going to say much better, but that’s probably pushing it. I got up at 7:30 this morning to help a friend move some things into a new office. I haven’t been sleeping lately, so I was expecting to be tired, grumpy and out of sorts when I got up, and I was. Never too hungry that early in the morning, I had a slice of toast with honey, my usual handful of vitamin supplements, a bottle of water and off I went — hit the road in the pickup truck (someone else driving).

I immediately got dizzy and off balance lifting things and walking up and down the stairs. I wasn’t long popping my first Xanax (electrical sensations were beginning to stir behind my eyes). It took a couple hours to do the work, then I had soup and a bun from doughnut shop. By the time I got home about an hour or so later, I felt good. Not nearly as lousy as I’ve been feeling for the past few weeks, on-and-off suicidal and all that.

This wanting to live stuff is tricky business.

Today’s my 32nd day of weaning. Still levelled off at 10mg.

Two days ago I was feeling like a zombie. But since then, things have been different. The next day, just before I went to bed, I began to feel better. And all day today I’ve been feeling almost normal. (It feels almost abnormal to feel normal again. Weird.)

About an hour ago I began to feel a bit of a headache, and that’s the only possible symptom of withdrawal I’ve experienced today. I haven’t felt dizzy or off balance or any of the usual things. I think the withdrawal is still happening, but it’s amazing how when you’ve experienced the worst of it (i.e., cold turkey withdrawal), the degree of the withdrawal can be measured down to the slightest fraction. Anyone notice that? If cold turkey withdrawal (namely the brain zaps) is a 10 in severity, then what I’ve experienced today is a 1, maybe a 2. It’s what we who have lived through this junk call a Good Day.

In terms of my diet and exercise and the usual things I do to keep the electrical surges at bay, I haven’t done anything different in the past two days. Perhaps it was just my body and brain finally adjusting to the 10mg level.

But I have another theory. It’s more of a curiosity, I suppose. Not much of a theory, but it’s something I’ve noticed a few times since I began the weaning process. Until now I just didn’t think it was plausible. But who knows. This is what happened:

The night before last, I wrote a short letter to a friend of mine. It was a calm, quiet letter, short but well written. And here’s the thing: I felt good about it. Understand now that writing is the one activity I get more fulfillment from than any other. So even a short letter like this after two weeks of not being able to write a coherent word (Swiss Cheese Brain Syndrome I heard someone say) — it felt good. It was a small thing, but it felt like I’d actually done something. The first time in weeks I didn’t feel so useless.

The satisfaction from having done something with a bit of purpose seemed to lift my spirits in a subtle sort of way. I just… felt better.

Then I go to bed and this morning I wake up, and immediately before I even have breakfast or take my Paxil, I feel like writing about something. So I sit down and write about it… until lunch time. Normally, I’d be weak and fatigued from going this long without eating. But I sat there slowly writing without noticing the time or even if I was hungry. I’ve had to take a small dose of Xanax in the morning for the past week because of the withdrawal I’ve been experiencing. But this morning I didn’t have to (today’s the first day since I’ve had the Xanax that I haven’t had to take any).

So I woke up this morning and managed to do something which I found fulfilling. And having done some writing, I felt better again. But what I mean by that is that my energy level went up. My neurotransmitters started transmitting on just the right frequency or whatever you want to call it — but I felt good. The severity of my withdrawal was significantly decreased.

And if something can decrease the severity of Paxil withdrawal, even if it’s a bit of a stretch, it’s worth mentioning. I’ve noticed it before but didn’t say anything because I thought it was just coincidence. But I’m not so sure if it is.

A few weeks ago I had a moment of clarity where I was able to write a few excellent paragraphs, and the satisfaction of that feeling immediately cleared my head of the usual heavy-headedness of the withdrawal. There was also another occasion when I was told good news about someone close to me, and on hearing that good news, within seconds of hearing it, for an hour or so afterwards most of my withdrawal symptoms became a hell of a lot easier to bear. They were still there but with much less intensity.

I read in Oliver Sacks’s book Awakenings of Parkinsonian patients whose symptoms did not progress in severity as long as they had support of their family, something to look forward to, relationships and experiences of some kind that provided them with a sense of personal fulfillment and meaning. Take away these relationships and the feeling of fulfillment these experiences provide, and the patient would immediately fall back into severe Parkinsonian tremors.

I believe that perhaps I have experienced something akin to this. Sacks speaks of the power of a compassionate human touch to bring a patient out of the painful physicality of their disease. There is no medical explanation for it. But it’s as if the disturbances in the brain, at least temporarily, cease to exist, marking a profound change in, I suppose, the quality of consciousness.

There have been times since my initial withdrawal experience in July when I have clearly experienced an immediate and beneficial neurochemical change due to something happening to me psychologically. Medical doctors don’t like hearing this kind of thing (and those jerks at GlaxoSmithKline would probably take this as evidence that it was “all in my head” in the first place), but I can think of several occasions in which I would normally have had to take a Xanax to feel such an alleviation of my Paxil withdrawal. Instead, I experienced something spiritual, if you want to call it that, that made me feel good, and the withdrawal effects became less intense.

In the black cloud of Paxil withdrawal, there are these little rays of sunshine and warmth to be had. You just have to put yourself in the way of them I think. It’s just a theory, but there it is.

P.S., It’s very possible I’m losing track of the days. I say it’s day 32 of my weaning off Paxil, but I might be off plus or minus one day.

Well, today it my 20th day of weaning off Paxil. I am now down to 10mg, alternating with 15mg for three days (today happens to be a 10mg day), and for whatever reason, I’m feeling okay. I occasionally have a mild tension around my head, but no headaches, no feeling like the brain zaps are just around the corner, hardly anything.

Easily for the past three days I’ve been walking around holding on to the walls, grabbing onto something every time I stood up, not making any sudden movements (especially with my eyes), avoiding loud noises, being extremely careful walking up and down stairs, and absolutely not driving the car.

Then around 10 o’clock last night as I’m watching the Olympics, I start getting tired, and as I do my head clears up and I don’t have any symptoms for the rest of the night.

Then when I woke up this morning, my head was still clear — but seeing how everything usually kicks in about an hour after I get up, I wasn’t very hopeful.

But, to my surprise, I’ve been okay all day. I was not expecting to feel like this today. I picked up a Xanax prescription from my doctor today to help “take the edge off” if the withdrawal got any worse — and worse is definitely what I was expecting — but so far so good.

Tomorrow may be completely different, but what I’m experiencing now is definitely a surprise. I’m still moving slowly and cautiously, but I almost feel like I don’t really need to.

Go figure. Who’d expect to have a good day when they get down to 10mg? Not me.

Preface – February 5th, 2001: This is the first post where I included one of the responses to what I’d written. After this I began to keep a better record of all the conversations and exchanges that took place on the Paxil-withdrawal forums.

Thursday, September 28th, 2000. In response to a post at a Paxil-withdrawal forum [similar to paxilprogress.org]:

Everything I know tells me that alternating 20mg/10mg of Paxil is too much of a drop. The most anyone should alternate or lower a dosage is by 5mg. If you stick to that regiment, it should work. I’m down to 10mg right now, and so far so good.

I told my doctor last week, “You better give me something just in case the brain zaps start creeping up on me, because I am NOT going through that again.” He gave me a prescription for Xanax (aka Alprazolam) which he said is often used to get people through withdrawal from many neurochemical dependencies. No more than twice I day I’ve taken at the most half of a 0.25mg pill (very small amount; sometimes I take a quarter of a pill), and it allows me to walk up and down stairs without experiencing too much dizziness. I am nowhere near 100%, but I’m semi-functional, which I consider an accomplishment.

So by alternating dosages by a maximum of 5mg and taking a little Xanax to “take the edge off,” I’m getting through it. When you try weaning again, the slow route might be the way to go.

Someone said, “I guess what is so frustrating is I can’t stand it that this drug has so much control over my body.”

You can put that on the top of my list too. You spend a good chunk of your life working out all the kinks of your personality, learning what works for you and what doesn’t, until you get to the point where things are pretty good. You’re more or less doing what you like and you’re pretty much a self-actualized happy camper. Some people even look at you with admiration. It was a bumpy ride, but you finally got it together and you know it, and it feels good.

Then you take a little pink pill called Paxil — and you can take the dignity of everything you’ve accomplished in your life and kiss it goodbye. The foundation of your personality turns to sand. Everything goes to hell and everyone sees you at your worst.

It’s what I hate the most. Absolutely the most. I’m not sure if I could live through something like it again. There’s no dignity to any of this.

Just had to say that’s one thing I really hate. Can I hear an Amen!

Response:

I started out at 2.5mgs the first two weeks, 5mgs the next two weeks. From the first day, I didn’t like the way I felt. Everything seemed unreal and unworldly. The doctor said the side effects would pass and that I should up my dose to 10mgs, which I did for the entire next month.

What side effects did I have? All of them — dry mouth, dizziness, urination problems, nightmares, zaps, brain slosh. You name it. When I again complained to the doctor, I was told I wasn’t even taking a “therapeutic dose” and that I really needed to take 20mgs.

For the third month, I did take 20mgs, but the problems did not go away — in fact, they intensified, so I stopped taking it altogether without a clue as to what lay ahead. Five days later, the withdrawal hit hard and fast, and I was completely debilitated with dizziness, zaps, vertigo, etc. My doctor was no help at all, insisting still that I should continue with 20mgs, or even go higher.

I was so ill that I called the pharmacist and he said I would have to go back on at least 10mgs and wean from there, which is what I did. I took 10mgs for a week or so, then went down to 5. At that point, I was shaving the tablets with a razor blade every day. When I got down to about 2.5mgs (where I stayed for a month), I went cold turkey. But the side effects persisted, lessening in some respects, but never completely going away. They gradually diminished over the next two years, but I’m still left with a host of weird glitches, word retrieval problems and memory loss being the two most debilitating, as well as light and sound sensitivity.

I thought that this was just me — until I really began to network with others whose problems also had not subsided, even though they had been off either Prozac or Paxil for months, and sometimes years. While most people eventually fully recover from the experience, there appears to be a segment of SSRI users whose recovery takes much longer. How long? There’s no way to know. There are people on the Prozac board who claim it took them five years to get back to their old selves. And this is my big problem with these drugs. There just doesn’t seem to be any way to predict who will have no withdrawals, who will have mild withdrawals, and who will have protracted symptoms. It appears to be totally unrelated to dosage, or length of time on the med. I’m really happy that these drugs have helped many people, but if I knew then what I know now, I would have never taken it at all. Nor would I wish my experience on anybody.

So, I guess it comes down to that saying “caveat emptor” — buyer beware [although we often place too much trust in our doctors for them to be aware, when clearly they're no more aware of the dangers than we are]. Everyone who takes Paxil (especially) has to weigh the short-term benefit against the possible eventual withdrawals. And this is something that the doctors don’t prepare you for — at least mine didn’t, and if you’ve read other stories, there is a haunting similarity.

P.S. (Sept. 2006): The added words in square brackets after “buy beware” are mine. Before I’m done re-posting Paxil Free, I think I’ll have to expand the Basic Facts list to include word retrieval problems. The person who responded wrote: “[The withdrawal effects] gradually diminished over the next two years, but I’m still left with a host of weird glitches, word retrieval problems and memory loss being the two most debilitating, as well as light and sound sensitivity.” As I mentioned on the first day of my re-posting of all this stuff, it’s been 6 years now and I still have problems expressing myself because I can’t think of the word I want to say — and I’m not the only one to experience these “glitches” (which is a good word for it). I also confuse written words so often these days that it’s embarrassing. Words like your and you’re; were and we’re; there and their. I have completely given up on ever trying to remember whether I want to use affect or effect. I’ve resigned myself to the fact that I’m going to get it wrong at least half the time now. It’s kind of depressing, especially for anyone who writes for a living… Is it possible to retrain my brain, to relearn all these words again? What the hell happened there? How did so many words and their meanings get wiped from my memory? Kind of disturbing, isn’t it?

One more thing before we move on to the journal aspect of this blog…

Having nearly lost my life to Paxil withdrawal and then survived to tell the tale, and having been in communication with others who went through the same thing, I may be qualified to pass along some things I’ve learned from the experience.

The following are some basic facts of paroxetine withdrawal, things you might expect to come face-to-face with while withdrawing from Paxil — keeping in mind, though, that everyone is different and that there are infinite variations to this experience.

#1: Electric Shock Sensations (aka “the zaps”): The pattern of these sensations are remarkably similar to certain kinds of epileptic seizures except that one doesn’t lose consciousness when they occur. (Personally, I would have preferred to have been unconscious.) They are experienced as a strong electric shock sensation behind the eyes which can easily spread to one’s head, face, spine and limbs. The initial surge — which is overwhelming and impossible to ignore — is often followed by a series of lesser surges which gradually dissipate in waves. These seizures are the most physically debilitating and emotionally disturbing of all the paroxetine withdrawal effects — especially if your doctor never warned you about it.

Along with these seizures you can expect to feel extreme dizziness like nothing you’ve ever known. At times I wasn’t able to stand up or move my head in the slightest without feeling like I was going to topple over. Climbing up stairs, I often experienced vertigo, which is the feeling that the second I look down I’m going to fall down and crack my neck. There were times (many times) when I found myself having to grasp onto the walls to maintain my balance while walking around the house. Sudden eye movement (horizontal, not vertical) seemed to trigger these electrical surges, as did physical movement in general.

I experienced these seizures (or mini-seizures, if you want to call them that) mainly as a rhythmic surge of electricity in-and-through my eyes and my head, but they seemed to get worse when I was hungry. For awhile, until I started to gain weight, I found myself eating constantly so I would never get hungry.

To help combat this particular withdrawal effect, I was prescribed Xanax (or alprazolam), which made it more bearable but didn’t make it go away.

I first experienced these seizures during my first attempt to get off the Paxil cold turkey (following my doctor’s orders). My doctor never told me that anything like this could happen, so when it did happen, completely unprepared for it, it definitely pushed me to the boundaries of my sanity. At one point I was clearly suicidal. If I hadn’t found support groups on the internet such as paxilprogress.org, I don’t think I would have survived that first week.

I had to go back on the Paxil and eventually wean myself off it slowly, but I experienced these paroxetine seizures — these debilitating electrical shock sensations behind my eyes and in my head — in varying degrees from the beginning right to the end of my withdrawal.

P.S. (Sept. 2006): At the time I wrote out these basic facts of Paxil withdrawal back in 2001, most doctors prescribing Paxil had no knowledge of its withdrawal effects, and there was very little written about it in medical journals. I don’t know how much that situation has changed in the past 5 years (though it doesn’t look good), but I’m glad to see that SSRI discontinuation syndrome is listed on Wikipedia. Here’s an interesting quote from that entry:

SSRIs [such as Paxil] are not addictive in the conventional medical use of the word (i.e. animals given free access to the drug do not actively seek it out and do not seek to increase the dose), but suddenly discontinuing their use is known to produce both somatic and psychological withdrawal symptoms, as described by researchers (Tamam & Ozpoyraz, 2002). Compared to the withdrawal symptoms of such drugs as opiates, alcohol, or cocaine, these reactions are quite different and frequently less significant, although the prescribing labels acknowledge the possibility of “intolerable” discontinuation reactions and some patients are never able to completely withdraw from SSRI drugs.

In Europe, SSRI manufacturers are not permitted to promote their products as “non-habit forming…”

I would have never gone near Paxil had I known the truth about it. I don’t think my anger about this will ever go away.