I want to talk about the common thread which I think is apparent in the experiences of everyone who has been through paroxetine withdrawal; and, in big bold letters, that common thread is THE FEELING OF BEING CUT OFF FROM THE WORLD. Often it’s not just a feeling; it’s a reality. There are plenty of other crappy things I could single out, things others may consider more important issues, but for me, this is the big one because I’m still working on it; it’s the one which I think causes the most damage and requires the most healing.

Oliver Sacks addresses this in his book, Awakenings (1990 edition), when he describes how a disease can consume a person’s life, consume all of their energy and attention for such a long period of time that (from page 240): “they feel, on the one hand, cut-off or withdrawn from the world, on the other hand immersed, or engrossed, in their illness,” a feeling which I’m sure anyone living with paroxetine withdrawal can relate to. Then he goes on to speak about the ‘awakening,’ or the recovery, in which one ceases to feel the presence of the dis-ease, but is instead naturally drawn towards and engaged by the presence of everything in the living world around them.

It’s been just over a year since my initial withdrawal experience and I wish I could say that I no longer feel the presence of this disease, but I can’t. (Paroxetine withdrawal, and post-withdrawal, is a dis-ease. I’d love to meet someone going through withdrawal who’s sitting back at ease with all of it.) It is less present than it used to be for me, but, along with other symptoms which I am too sick and tired of to describe in detail, I have chronic pain (as in all the time) which disrupts the relaxed flow of my thoughts and feelings and kind of takes the fun out of things; it gets to me at times. It is this cognitive disruption, one which seems physiological in origin, that interferes with my fully feeling the presence of the world around me like I used to, of my fully being able to be myself. I’ve been trying to “walk it off” all this time, but I can’t.

Throughout my Paxil Experience I’ve had people full of good intentions pass on to me the age-old advice, “Don’t dwell on what’s happening to you. Just go outside and enjoy the sunshine and the simple things. You’ll feel a whole lot better.” That’s a simple solution that works, and I know it works because I’ve lived by it for many years — but it works for people who have their health, not for someone who feels like they’ve been hit in the head with an aluminum bat from the withdrawal seizures and the constant headaches and body aches. Let’s crack one of these good-intentioned people across the head with a two-by-four and then tell them not to focus on the pain (impossible); tell them to go out for a leisurely walk while their head is pulsing with pain and enjoy the sunshine which will surely make them feel so much better. Maybe then they’ll realize how misplaced and absurd some of that age-old wisdom can be, especially when it comes from people who don’t have the experience to back it up.

Paroxetine withdrawal isn’t a case of someone feeling ‘a little blue.’ You can’t just walk it off by going outside and enjoying the sunshine. It’s an assault on a person’s entire being, not just emotional. The neurological and physiological effects of paroxetine withdrawal are real — as real as if you were to break both of your legs. It’s not as physically apparent, but the injuries are just as real and just as disabling. (“Unless you’re bleeding from a head wound or in a full body cast,” someone recently wrote to me, “nobody seems to get it.”) You wouldn’t tell someone with two broken legs to ‘walk it off.’ But that’s exactly what many people going through withdrawal are told. Because of the general ignorance about paroxetine withdrawal within the medical community, and because it isn’t as blatantly disabling as a physical injury, one is often treated by family, friends, co-workers and doctors as if the whole thing is ‘just in your head,’ and this kind of treatment from others only compounds the feelings of loneliness, isolation, of being cut off from the world.

Something else which adds to this feeling is how we, those of us who are living with paroxetine withdrawal, react to it within the context of our relationships with others. But it’s not just how we react, but how those closest to us react. Specifically I’m talking about the effects of not knowing how to react. People end up over-reacting or not reacting at all — two extremes which can cause a whole lot of hurt and can separate people easier than it can bring them together. That’s the poison of this experience; I can taste it in most of the stories I have heard in the past year from other people withdrawing from paroxetine, in listening closely to what they have shared with me. In the background of all these personal experiences there’s a feeling of sadness, a sadness which I think comes from being deprived of the human relationships that normally ground us, the relationships we trust, the ones that let us know who we are, that allow us to feel connected and involved with the world around us.

Trying to get off paroxetine can push even the most civilized of us to the edge of our sanity, and that in itself can make a person feel like they’re walking through a strange land with no one by their side to comfort them. The physical and emotional strain is beyond anything most of us have ever known. Maintaining the relationships that are the foundation of our lives, whether they are professional, familial or intimate, becomes too much for some people who are battling — by the hour at times — with the effects the paroxetine withdrawal. The result is that this disease can cut a person off from the people who mean the most to them, from the structure of normal relationships that provides one with a sense of reality and a sense of self. Your whole world, everything you breathe, becomes burdened by this disease. Under the strain, professional relationships disintegrate (a person can only take so many sick days before they lose their job), marriages fall apart, friends become acquaintances, those closest to us become strangers, and the people we trusted the most become the people who hurt us the most.

This happens because paroxetine withdrawal is beyond the scope of normal experience for most of us (including our trusted medical professionals), and therefore, not knowing how to react to it, we make mistakes — especially in our relationships with those closest to us. This is where some serious damage is done.

An understanding of this situation, though, doesn’t seem to solve the problem which — from my experience and understanding — is a problem of faith, losing faith and trying to regain it. I’m not talking about Yahweh or Allah or Buddha or Jesus. I’m talking about the human relationships that make us feel secure, that let us know who we are — and the foundation of trust that keeps them alive.

There’s a scene near the end of the 1995 film Smoke, starring William Hurt and Harvey Keitel, where Keitel’s character says to Hurt, “If you can’t share your secrets with your friends, then what kind of friend are you?” Hurt’s character thinks about this for a minute, smiles and finally says, “Exactly. Life just wouldn’t be worth living, would it?”

During my withdrawal, I found out who my friends were. Someone would ask me how I was doing, and I’d tell them the truth. It’s absolutely disheartening how many of my so-called friends never called back after that. Well, I didn’t react too well (or with much kindness) to this. I think it’s fair to say that when I realized how alone I was with this experience — that’s when I began to go insane (having unexplained and terrifying seizures at the same time didn’t really help either). But what really happened is that I lost my faith. From my doctor’s grossly misinformed medical advice (“The great thing about Paxil is that you can stop taking it cold turkey.”) to being left alone with this horrible experience by friends I thought I could count on, my ability to trust people on the most fundamental level — my faith — died. That’s the only word for it. We take for granted the trust and the belief which holds our everyday relationships together. But try facing the day without that trust; it’s like being dead to the world. That was the worst aspect of my withdrawal experience. It still is.

During the seven months of my withdrawal, it was simply impossible to have normal social relationships because of the debilitating effects of the withdrawal. And after the worst of my withdrawal was over, the world didn’t suddenly become a beautiful and wondrous place for me. Besides developing a post-withdrawal condition similar to fibromyalgia, which began as severe headaches, body aches and muscular rigidity, a condition I may have to live with for the rest of my life, the effects of my withdrawal experience are far from over. For instance, there were psychologically disturbing aspects of the experience I dealt with at the time but only in a superficial manner so I could get through that particular day or hour or minute of my withdrawal. Now that I’ve survived it, though, the reality of it comes back to me — such as the reality of the time I nearly killed myself and then wanting to kill myself through countless days of my withdrawal. One doesn’t easily forget this kind of thing. It’s as if I have a knowledge of death that is with me now all the time, I can’t shake it, and I don’t know what to do with it. I haven’t been able to write or talk about most of this because it’s just too much to take. It’s too disturbing. Nevertheless, I’m not ignoring any of it; I’m just pacing myself. It may take me the rest of my life to find all the right words for what has happened here, but maybe that’s what life is all about anyway.

One writes out of one thing only — one’s own experience. Everything depends on how relentlessly one forces from this experience the last drop, sweet or bitter, it can possibly give. This is the only real concern of the artist, to recreate out of the disorder of life that order which is art.

Being able to write has kept me grounded better than anything else I got going for me. Normally I can create some kind order out of the disorder of my life by finding the words that allow me to grasp the experience. This is the first time, though, I’ve come up against something that has stopped me in my tracks — and I find that disturbing as much as anything else. Except for emails and what I occasionally add to this site, I haven’t been able to write for months. I don’t know what keeps me going, but I’m still here. I move much more slowly and cautiously now, but I do move. That’s what’s most important, because not doing anything — not responding — would be the worst thing I could do. It’s the worst thing anyone could do.

“All it takes for evil to triumph is for good men to do nothing.” (Edmund Burke.) That’s what I’ve learned most intimately from this experience. I mean it. The majority of medical professionals who encounter paroxetine withdrawal in their practice respond with one of the GlaxoSmithKline patented sales pitches ranging from, “You don’t have to wean yourself off this drug,” to, “The withdrawal effects are minimal and don’t last long.” This kind of answer is a non sequitur — it has no relationship at all to the reality of paroxetine withdrawal, it is completely dismissive, and it does nothing to alleviate the suffering of the people who are experiencing withdrawal. By ignoring reality, it only makes things worse.

A word to those of you who have a friend, family member, husband, wife, or someone close to you going through paroxetine withdrawal: Do NOT ignore them. Responsibility is the ability to respond. Even if you have to say to them, “This is too much for me; I don’t think I can deal with this right now,” that’s better than not saying anything at all. At least it’s a response, an acknowledgement of what they’re going through. Some people are so afraid of saying the right thing that they don’t say anything at all. DON’T be one of those people. I understand that kind of fear, but in this case, again, understanding doesn’t make the situation any better. When I turn to someone I trust and they don’t acknowledge me with even the slightest response, it’s not only dismissive of what I’m going through; it’s dismissive of me as a person. It’s bad enough to get this from doctors, but when it also comes from a close or intimate friend, the effect is more personal, and the inherent trust that holds together any kind of meaningful relationship or friendship suffers. Not until it’s gone does one realize how fundamental this belief-in-others is to all of our relationships, to just waking up and facing the day. If you know someone who is going through withdrawal, please don’t be so afraid to say the right thing that you ignore them altogether. That’s the worst thing you could do. Paroxetine withdrawal is lonely and horrible enough on it’s own; treating someone going through withdrawal like they don’t exist will only further beat down their spirit. Any response, even if it turns out to be the wrong one, is always better than no response at all.

Take my word on this. During this kind of dis-ease, the most powerful medicine is friendship; that means being there. There is nothing more nourishing to a person’s body and spirit than the knowledge that they’re not alone. This, I’m sure, is the difference between life and death for some people experiencing paroxetine withdrawal. I’ve mentioned before how I read in Oliver Sacks’s book Awakenings of Parkinsonian patients whose symptoms did not progress in severity as long as they had the support of their family, something to look forward to, secure relationships and experiences of some kind that provided them with a sense of personal fulfilment and meaning. Take away these relationships, take away the feeling of fulfilment, the meaning these experiences provide, and the patient would immediately fall back into severe Parkinsonian tremors. Sacks speaks of the power of a compassionate human touch to bring a patient out of the painful physicality of their disease, and I believe that I have experienced something akin to this during my withdrawal. The best days of my withdrawal, not just mentally but physically as well, were the days in which I felt a connection to someone, usually in a moment of friendship, talking about something, it didn’t matter what; enjoying each other’s company, being touched by another person’s presence. The effect could be so profound that, sometimes for two or three hours even, my withdrawal symptoms would disappear altogether. Again, all I’m talking about is being there. You can never take away anyone’s pain, but you can help make it bearable.

Friendship is unnecessary, like philosophy, like art… It has no survival value; rather it is one of those things that gives value to survival.

My deepest belief (here it comes) is that we are here to be here for one another. It’s a pretty simple, straightforward belief, but there it is. It’s the fundamental foundation of how I try to live my life (and why I created this web site). It may not be perfect, but when the cold rain is falling, whether it’s on me or someone I care about, this belief is what pulls me through and keeps me breathing most of the time. It’s about the only thing I’ve ever really had faith in, the one thing that has always made sense to me.

After everything I’ve been through this past year, it’s going to be a while before I regain that faith. I feel like I have nothing without it. I don’t have much faith in doctors anymore. I question the depth of all of my old friendships now. The thought of simply trusting anything or anyone is like contemplating climbing Mount Everest. It couldn’t be more daunting. I’m facing life without trust, without faith, and I’m starting from zero. That’s the effect paroxetine withdrawal has had on my life.

The next month or two, returning to what used to be my old life, is going to be a hell of a challenge. I’ve already done what I can to get back on track by writing this blog. If it’s provided comfort or reassurance to anyone going through withdrawal, then it’s been worth the effort. And if I’ve gotten through to anyone else so that they’re not so afraid to care, so that they understand how essential it is to be there, then I’ve hit a home run. Right out of the park.

I hope that’s the truth.

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.

It’s been about five months since I took my last bit of Paxil, and right now the main thing I’m still feeling is difficult to describe, but it feels like my head is full of concrete — and concrete that hasn’t set yet.

Don’t give me that look. I know how strange that sounds, but try describing any of this Paxil-related stuff to anyone and chances are they’re going look at you like you’re a nut and you’ll never hear from them again.

Anyhow, this unsettled concrete head feeling. I’m taking a heavy duty muscle relaxant to fight it off, and it’s working. I don’t have headaches nor any of the hypersensitivity I used to have. Which is good. But my head, or the inside of my head, still feels a bit twitchy (I can’t find the language to describe it).

Then I notice that my muscles are stiff. For instance, whenever I do any kind of stretches, my muscles don’t stretch — they crack. Every single muscle in my body is like this, including my neck muscles and my head muscles.

So naturally I’ve come to the conclusion that I am really tense, but I don’t want to keep relying on medication to loosen myself up. First of all because it doesn’t loosen me up that much anyway, and secondly, I don’t want to get addicted to tranquilizers and then go through another withdrawal experience.

Anyone have any non-medical suggestions to easing this tension, something I can physically do that helps release tension? Man am I tense. I’m thinking about signing up for yoga.

First response:

Just wanted to let you know two things: Firstly, that my muscles and joints are cracking all the time now (for the past few months), and this is definitely new and Paxil-related. I never suffered from social anxiety, so I know its no “relapse.” Secondly, I just wanted to contribute a new metaphor for the unset concrete in your (and my) head. I’ve likened it to Jell-O pudding — just as an add-on to the mushy brain metaphor.

Also, I think yoga is a great idea. When I started it in September to help deal with all this, it was so good for me. I love it because it’s the only exercise you can do on your own at home with only a small space, as well as with your eyes closed. And of course, yoga will help those joints. But just as a warning, it will take a while to notice a difference.

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’m beginning to think of my future now. I still have a hypersensitivity to light and sound — the slightest unanticipated sound, like the house creaking or even the sound of someone clipping their nails, makes me jump about 20 feet in the air — and in the run of my day, this is what takes up most of my energy. But I’m not waiting around for it to get better. Whatever kind of work I eventually find will have to be tolerable to these remaining withdrawal symptoms. I get bad headaches and my bones ache when I walk around too much, but I’m basically at the point now where I’m ready to move on. I am far from 100%, but as long as I take it slow and carefully, I think have a chance of eventually making a full recovery.

I think it’s been about two months since I took my last tiny sliver of Paxil, and I think it may be over soon.

I don’t have any of the electric-shock sensations shooting through my head and my eyes anymore. What I’m experiencing now is still somewhat severe, but it’s gradually becoming less severe, and I think it may be the last of the withdrawal effects.

Mostly all I have now is an extreme sensitivity to light and sound, which is similar to a hangover sensitivity, except it’s there all the time, not just in the morning. (Note: These are still debilitating withdrawal effects, but I think they’re the last of them.)

The other thing I have, probably related to the painful sensitivity to light, is bad headaches, like the kind of headaches that come from caffeine withdrawal; all the Tylenol in the world won’t make them go away. It’s an ache that reaches every part of my body, not just my head (my bones are aching). It’s a constant drag on my energy — but a walk in the park next to the electrical sensations. Sometimes the headaches get so bad that I become a little dizzy or disoriented, but that doesn’t happen often.

From everything I know about withdrawal (Paxil withdrawal, Valium withdrawal, heroin withdrawal, etc.), this is probably the end of the line — mainly because I’ve experienced every other withdrawal symptom anyone could have. There’s just nothing left to go through.

I think this may be progress. If things continue to go the way they are, except for the psychological scars, which are significant, I should be able to return to the land of living within a few weeks. I hope.

If the promised land really is in sight, if that’s really what I’m looking at right now, I probably won’t be around for awhile once I get back on my feet, mainly because I just want to live and make up for all the months that were stolen from me while I was going through withdrawal (which began last July; that’s how much of my life this junk has taken from me).

If I finally am getting better, one thing I will do before I take on the world again is set up a website which will contain all the significant post I have made to paxilprogress.org, and all the informative responses that I received from them. Looking back over these messages, I find that they capture the history of this experience better than any story I have the energy to write. I have detailed records of my experience from the first day of withdrawal up to the present day, and I think it may provide an excellent picture of what the experience is really like. Most people probably won’t have as hard of a time as I have had, but that’s what makes it valuable. It’s an accurate history of just about everything that could happen to someone.

This experience has completely consumed six months of my life. The end is in sight.

First response:

As I read your post, I started to cry. I’ve been off Paxil almost two weeks now after starting the long withdrawal process this past September, and what a ride it has been. I think I’ve been so busy with Christmas/New Year’s holidays that it hasn’t sunk in that I’m off the Paxil. I still have a half of a bottle of liquid Paxil in the medicine cabinet. I threw away any pills I had left a while ago. Maybe I’ll have some sort of ceremony in the bathroom while flushing the last of the Paxil down the toilet, farewell, good riddens.

Paxil has no hold on me now and it’s nice, but it’s sad to have had to go through all of that. Maybe I need to grieve for the “lost time” in my life due to this medicine, and then get on with life and vow to never get myself in such a mess again.

Good luck. I’m so glad the worst is over for you too.

Postscript – February 27th, 2001: In this post, I said: “If the promised land really is in sight, if that’s really what I’m looking at right now, I probably won’t be around for awhile once I get back on my feet, mainly because I just want to live and make up for all the months that were stolen from me while I was going through withdrawal…” A month and a half later: Yes, it was the promised land, but getting right back on the horse again wasn’t possible. I wasn’t, and still am not, able to return to the quality of life I had before Paxil. After seven months of not being able to do anything with my life, I want to jump back into things full force — I want to make up for lost time — and I can’t. (Take note: I hate this.) It’s like having a Ferrari sitting in the garage for the past seven months; the garage door is open now, but I’m not allowed taking it out on the highway. I find myself now fighting against a depression, because as much as I want to take the car out on the highway, I know I’d probably lose control and crash it into a telephone pole the second I got out there. Learning how to take it slow — man, this is something I need lessons in, especially at a time like this. I want to get right back into things. And I can’t. This is a huge lesson for me: As much as I want to get on with my life, I can’t rush it. (Deep sigh.)

The update of how I’m doing is kind of melodramatic. It’s not as good as I’d like it to be, or as good as I thought it first was, but here it is.

Anyone who has read my previous postings knows that I’ve been off Paxil for over a month now, but many of the withdrawal effects were still lingering, namely the electric-shock sensations that seemed aggravated by fast eye movements, bright lights — all that crap. I was getting really, really sick it. Really close to the end of my rope.

Then about 10 or 11 days ago I decided to do one those cleansing fasts where one doesn’t eat anything for two or three days, only water and fruit juices. None of my usual vitamin supplements, nothing; just water and pure fruit juices.

Well… it worked. Like many of the things we do to make ourselves better, it wasn’t much fun while it was happening, but within a day or two after I finished the fast (which lasted about 2 and a half days), I began to feel better. But more importantly…

I woke up last Saturday (6 days ago), and the electrical sensations were gone. There’s no other way to describe it except to say they were gone. I immediately returned to my fully alive, animated self, ready to jump up and down and hit a home run. I could feel it in my eyes that it was gone. I still had a painful sensitivity to bright light, and sudden loud noises still made me jump about ten feet in the air, but the electrical sensations behind my eyes, in my head, everywhere, were gone.

This felt like the greatest relief of my life. I was in the bathroom taking my morning shower, and about halfway through it I realized that my eyes were okay, that my head was okay, that everything was clear. I don’t know how long I stood there not washing, just standing there crying under the shower. I couldn’t believe it.

I got dressed and went on with my day and didn’t tell anyone, because it was still a bit unbelievable to me, and I was half expecting it not to last. But it did last — for two whole days. And they were the best two days I’ve been able to live in the past six months.

Then on the third day I started getting headaches, extreme body aches; every time I stepped on the ground too hard, I felt like I was about to get a migraine. Physically, my head and my body were just one big ache.

Most of that has faded, although today I’m still feeling stiff, and my eyes are feeling that way too. I wouldn’t say the electrical sensations have come back, but it kinda feels like they could. It kind of hurts to move my eyes if I move them too far to the left or the right. It’s as if the muscles that control my eyes are sore and stiff. It’s hard to explain.

Perhaps it’s a residue of the brain zaps I had at varying degrees for the past three or four months. I don’t know. I’m sick of theorizing. Maybe the worst is over, maybe it’s coming back — I don’t know. But I’ve been feeling pretty lousy these last few days. Last Saturday and Sunday were amazing, and now I don’t know how I’m doing. This may be progress, or it might just be more of the same. I can’t tell anymore.

I think I’m going to try another fruit juice fast right after Xmas. I’ll just keep doing what I can.

But anyhow, that was my news. I had two solid days of pure consciousness, nothing getting in the way of my nature; relaxed, flowing thoughts and feelings. Everything running smoothly. Not a sign of withdrawal.

I don’t know what’s going to happen next, but we’ll see.

For those two days, it felt like the greatest thing in the world.

I don’t think the paresthesia/electrical sensations in my eyes and my head are caused by anxiety and stress. I had plenty of anxiety and stress before I went on and subsequently tried to get off Paxil, and it’s NEVER felt like this. I have had tension headaches in the past, but what I’m experiencing now is something completely different altogether.

The zaps are the cause of the anxiety and stress, not the other way around.

This isn’t an argument to me. It’s a statement of fact. I tried getting off the Paxil and immediately, for the first time in my life, began experiencing the brain zaps. This is the most obvious, simple, straight forward equation. It’s a neurochemical reaction that’s happening in my brain because of this drug. If I’m feeling any anxiety, depression or stress, 95% of it is coming from this experience of trying to get off this drug.

Overall, I have been physically and mentally healthy my whole life. My doctor keeps asking me, referring to the brain zaps and the electrical heaviness in my eyes, “Are you sure you’ve never experienced anything like this before?” I’ve never taken an anti-depressant before Paxil, I’ve never “experimented” with LSD, cocaine or anything stronger than pot, and when I did, I was never a dopehead. I’ve never been an alcoholic. I don’t have a history of this sort of thing. I have no doubt that these electrical sensations in my head are caused by the Paxil.

I wasn’t feeling any stress or anxiety until I tried getting off the Paxil, and what I’m experiencing now is not due to any pre-existing condition that I know of. I may be feeling depressed, and I may be experiencing some anxiety — but my brain goes into an electrical seizure every time I move too suddenly or move my eyes too fast or have any kind of bright light shone in my face. Is not a little stress and anxiety a normal reaction to such a disturbing experience? I’d say it is. (Some people may say to this, “Get over it. ” But I’ll get over it once it stops.)

When my doctor prescribed me the Paxil, he didn’t inform me that anything like this could happen — because he didn’t know. GlaxoSmithKline knew all along but deliberately kept this information from the medical community. They deliberately misinformed everyone. Having experienced this injustice as intimately as anyone could, I find it very disturbing. If I knew someone was clearly getting away with murder, and the murder of a loved one, I might find it just as disturbing. Anyone who doesn’t recognize this as an injustice has got their head up their ass.

Under these circumstances, there’s plenty of reason to feel extreme levels of anger, frustration, depression, anxiety, and so on. The point is: I didn’t start off like this. Paxil did this to me. Paxil has taken away five months of my life (so far). I have been physically and mentally debilitated by this experience — in trying to get off this drug. I know what has happened to me. I’m not just having a string of bad days at work. Unless one genuinely does have a history of this sort of thing, I’d say it’s naïve to think that this is caused by everyday stress. No way, sister.

This is a neurological pathology brought on by Paxil withdrawal. Having electrical surges kicking in from behind my eyes is in no way caused by stress and anxiety. It’s the other way around. Speaking only for myself, I don’t have a single doubt about it.

First response:

Oh, the zaps are definitely Paxil related. I have NO doubt about that. The first time I got them was when I missed a couple of doses. I got “the flu,” but I kept telling people I’ve never had a flu bug like this that made me unable to move my head without — can’t remember what word I used at the time, but — a zap.

I have told friends who know what I am going through that a zap is like touching an electrical fence. Except, that instead of touching it with your hand, it is like the wire is touching your brain. That is where it starts, and then it goes down your back, front and down your arms and fingers. I can have one, or three in a row.

Second response:

I totally agree with you! I have had migraine headaches in the past, but these are different! Sometimes I think it is just another sinus headache, but it feels different. It’s in the eyes and there’s a vertigo feeling. The electrical impulses in the brain are misfiring. It only makes sense if you think about it.

I am still on my miserable 7.5mg a day, but I am beginning to feel (I think). Today while driving home from work I began to feel sad and I started to cry. I was thinking about some unresolved issues that were the impetus to me taking Paxil in the first place. At first I was depressed about feeling depressed, but I began to realize, “Hey… I am feeling again! This is a good sign, not a bad sign!”

Paxil is a mind controlling drug. No better way than to turn us into Zombies by shorting out our brains. Accident?… I wonder!

Thanks! You always make me think, and just at the right time. Keep the information coming. It makes me want to keep fighting! I needed that tonight!

Third response:

I feel the same about the electrical charges. They can be horrible. They make it impossible to concentrate. At times I was afraid to move my head. One day on a weekend I layed on the bed and with my eyes closed all day. Every time I would open my eyes the charges would surge. If you haven’t had them it is difficult to explain to anyone. Concentration was nil, along with moving my head.

When I mentioned this to the doctor he looked dumbfounded — he has been in practice as a psychiatric doctor for years. His reply was that he had heard of people getting them in their legs. I knew I was in trouble then.

I do not know if other SSRIs do this when withdrawing. I would have liked for him to have had experience with SSRIs first hand so he would have had a better understanding of my situation. I told him this in a very nice why. He grinned. Yeah, funny.

Half these doctors need to listen a little more to the patient and forget what the drug representative tells them over a cocktail.

Fourth response:

You’re right. The electrical charges surging through our brains are NOT stress-related. I swore that I was either being electrocuted or having a seizure. And there were times when I swore that my braining was FRYING! Taking Paxil is the worst thing I have ever done in my life. This has been three years of hell. My life will NEVER be the same.

Someone said, “It is the pressure in my head and behind my eyes that gets me down. I feel as if I must force myself to focus.”

I should have had those words stamped to my forehead for the past 80 days since I’ve been weaning off the Paxil.

Because I’ve taken multivitamins up the gazoo, I haven’t experienced the Paxil Flu. But right now I seem to have the body aches, and I’m in a mood. I don’t know what kind of mood, but it’s a mood alright.

Anyway, that’s just me. Trying to walk it off. No major brain zaps anymore, but the pressure behind the eyes is still there. That’s the one constant throughout all of this.

This is a serious impairment on my brain function.

There is not a curse loud and long enough to express my anger and frustration.

P.S. (Sept. 2006): The pressure behind the eyes mentioned in this post is part of the brain zaps or electrical surges that, for me, began in my eyes and then went through my head and the rest of my body. There was always that weird pressure inside my eyes that made it feel like a brain zap was about to hit me any second. I’m sure the hypersensitivity to light was connected this insane electrical pressure in my eyes. (I just added Vision / Eye Problems as a category, though for the most part eye problems will be convered by the categories for the electrical surges and hypersensitivity to light and sound.)

Angela wrote [on a forum similar to paxil progress.org/forums]:

It has been three weeks since I have been off of Paxil. I’m terrified.

Every now and then I feel some withdrawal symptoms, nausea, severe headaches and total lack of focus and concentration. But what scares me most is the way my mind is working.

I have been so angry lately, I lash out at my friends, I already lost one, and almost lost my best friend because of the horrible things I was saying. I just spoke to my boyfriend, and hung up feeling terrible, because I keep having mood swings. One second I want to hurt someone, I want to punch, kick scream, anything — the next, I am sorry for feeling this way, and sorry for acting the way I do. Is this a result of a chemical imbalance created by the Paxil? Wow. I wonder if the chemistry of my brain is going to remain in this “schizophrenic” trance.

While I am no longer feeling depressed, I feel trapped. Like I’m in a jail, and I want to break through the walls that surround me. I want to kill myself because I am afraid of what I might do, who I might hurt, that I am a truly horrible person and that I do not deserve to live. I don’t know what to do, or think, or say.

Susan wrote:

My advice is not to be alone too much, and not to let your thoughts dwell on dying. You are not a terrible person — keep reminding yourself what you are going through, that it’s the Paxil withdrawal, not you.

I haven’t quit yet — I just lowered my dose from 10mg to 5mg every other day. About a month ago, I lowered my dose to 10mg and I noticed the ANGER more than anything. I don’t think I have any more anger inside me than the average person, and possibly less, but I felt furious for about a week or two. And I noticed that the worst seemed to be that time before my period. (The Paxil may have been buffering my emotions during that time.)

My boyfriend was over one evening, not feeling well himself, and said something that I normally could have handled, and I slammed the door behind him when he left. We tried to talk a few days later, but it didn’t go well — then we didn’t talk for nearly two weeks, but are now back on track.

My point is, I’m sure the change in my neurochemistry had a lot to do with it. I was so upset one evening, I got into the word processor on my computer and wrote down, “I am angry…” and then a list of all I was angry about. I came up with 23 things, and intended to come back to it. And a lot of the things were not concrete things that had been done or said, but my perceptions about what others thought about me, and the INJUSTICE of it all! I really felt vulnerable. (I am a little nervous about this upcoming week of my cycle.)

Please be kind to yourself, even if you are having a hard time feeling kindly towards others right now. If you had a daughter and she were experiencing what you are experiencing, how would you want her to think about herself? Try to be a kind parent to yourself. Take care.

My response:

Experiencing irritability problems? Kind of feeling like killing someone else or killing yourself? At this moment in time, I think I can relate…

The number one thing to do right now is not kill yourself. I’ve been weaning myself off Paxil for 41 days now (I’m almost down to 5mg), and that’s 41 days of my life not being mine. I’ve been smiling patiently the whole time, but I am so sick of it that I am ready blow, I am ready to lash out, and I have days where it seems that the most reasonable thing to do would be to kill myself. The clarity of this thought when it’s there is — how do I describe it? Talk about a mind trip. The only thing that keeps me going is the knowledge that everything I’m experiencing is being caused by the Paxil withdrawal, and that eventually the withdrawal itself will withdraw. I don’t know when, but for now I know that what I’m feeling isn’t my fault, and that I’m not crazy.

At the same time, while I know that I’ll be enduring this for some time to come (and I hate it that my life isn’t mine while this is happening, that I can’t even begin to live my life the way want to while this junk is making me into a zombie) — at the same time I know what I have to look forward to (it’s going to get worse before it gets better). On top of the frustration I naturally feel from having my life made unproductive, uncreative and useless by this wonderful little pill, I’m beginning to experience the irritability that comes from withdrawal — and it’s the kind of irritability where I don’t even want to look at some people, I don’t want them to look at me, I don’t want to listen to them open their mouth and say something stupid that I don’t have the energy for. I have become one big ball of sunshine. I have moments where I feel I could grab some people by the head and break their neck, or just punch them in the face and knock them unconscious so I won’t have to deal with them.

Kinda scary, isn’t it? Everybody thinks I’m handling this situation with ease. They don’t know the half of it. If it’s disturbing to read what I’m saying here, it’s a hell of a lot more disturbing being the one living it, believe me.

Right now I would like to live in a log cabin in the woods and be left alone. Not so that I can go off by myself and blow my brains out, but because I know that the more people I have to deal with everyday (especially stupid people, as well meaning as they may be), the more likely I am to punch somebody in the face or tell them to f*** off…

Well aware that this is where I am right now, I do everything I can to avoid people. This isn’t anti-social; at the moment it’s just a matter of survival. I would like to lock myself away until the worst of this is over with. Goddam Paxil.

But the point is, you’re not alone with the mood swings, with the extreme surges of anger, etc. — and after everything you’ve been through because of our little friend, Paxil, who the hell wouldn’t be? I’m ready to commit violence on some people because they have no idea how debilitating this experience has been — they have no idea what a challenge it has been for me to maintain my civility throughout all this.

I haven’t lost any friends yet, mainly because I’m staying clear of everyone as much as possible. I think most of us going through this have experienced some kind of personal loss due to the Paxil withdrawal. That’s doesn’t include the loss of the quality of our lives while we’re being put through this shit, the loss of our living. Regardless of the physiological effects of Paxil withdrawal (which are extremely unpleasant and often debilitating), the psychological effects aren’t exactly a walk in the park either. Let’s not forget this.

My own personal prediction of how my withdrawal will go is that all the feelings I would have normally experienced while I was taking the Paxil but were numbed out by the Paxil — every single one of them is going to come back with a vengeance. It doesn’t mean a relapse into a depression or anxiety; it means that all the feelings that the Paxil didn’t allow me to feel are going to be felt now. So regardless of the physical symptoms of withdrawal, of living without Paxil, the psychological experience itself will be a motherload. When I get off the Paxil, I don’t expect to bounce back to my good old self right away. It’s going to take time. That’s just a theory, my own speculations based on my previous experience of cold turkey withdrawal.

This Paxil withdrawal experience has affected everything in my life since it first happened in early July. I’ve been living a useless life ever since. That’s how it feels anyway. And now that I’m almost down to 5mg, I’ve got the mood swings, the sudden burst of anger, irritability on a level which is off the scale, insomnia, occasional suicidal feelings, dizziness, gastric disturbances (to put it kindly) — the works. The only thing that keeps me going right now is that I know it isn’t going to last. I don’t know how long it will last, but I know it will pass as long as I do everything in the meantime to keep myself healthy (vitamin supplements, exercise, staying away from annoying stupid people, etc.).

The other thing I’ve had to do recently is to tell the people who know that I’m going through withdrawal that I have reached the stage where I am extremely irritable and that they shouldn’t take my unfriendliness personally, and that the best thing they can do is to not push themselves on me. It other words, I’ve politely told them to get out of my face. While I’m going through the irritability stage, something as simple as that has made a difference.

First response:

Reading your message is like reliving my own nightmare. You have so very eloquently expressed feelings what I and many others have had as we journeyed through our withdrawals. I still have a lot of anger over the experience, but in our society you’ve got to be careful who you express those feelings to! You’ve done so much for us on this board in letting us know that our experiences weren’t out of the ordinary or unique — unless you’ve taken Paxil.

THANK YOU for sharing. It really means a lot to me to know that others have felt similar emotions.

Second response:

Thanks for being so candid and sharing your story. I’m gonna risk getting my neck broken here, but the rush of emotions that you will feel again when you complete withdrawal may not be as bad as you’re expecting. I’ve been reading posts here since July 2nd, and I’ve never read any that make it sound hard to deal with. On the contrary, most have said that it felt great to be able to cry again, etc. Tapering can be rough and the days after your final dose may be rough, but at that point, you know that the end is in sight. Your anger should subside. Hang in there, you’re probably in the worst of it right now. When you’re out of this, I hope you can spread the word about what Paxil did to you and prevent others from suffering. I sure have sympathy for you. Let us know how you’re doing.

Third response:

Thank you for your post. I felt myself choking up reading it and reliving the experiences you have described.

I, too, have been down that road. I have never been prone to angry outbursts, so it was really hard for me. I have felt so much shame for acting the way I have toward family (strangely I didn’t feel anger toward others). Many times they would just look at me “stunned” at what they were hearing come from little ole docile me! My rage was mostly ranting and raving. Thank God I didn’t feel suicidal or want to physically hurt anyone. My words were bad enough and I am sure they caused pain to others.

I have been off Paxil for 6 weeks after taking it for 6 years and can tell you that it will get better. My anger lasted for 2 weeks past my last pill and then went away. Some days it wasn’t too bad and others… well… let’s just say I wasn’t too much fun to be around.

I started taking St. Johns Wort about 3 weeks after my last Paxil and just quit taking it a week ago. I have been going through the anger period again just in the last week. I really think and hope it is from discontinuing St. Johns Wort. I am hopeful that I will get past this last bump too.