I had someone ask me this in an email: “What were you like while taking the Paxil? Did it help you deal with matters better, keep you in control of your emotions? Did you feel better than you do now?”

I didn’t do anything to take care of myself while I was on Paxil, except wake up every morning and take that little pink pill. Talk about taking the easy way out. But yes, it did help me deal better with my emotions. I realized afterwards that I was detached and numbed out from my feelings and the reality of my life, that I didn’t cry once while I was on Paxil. But at the same time I seemed to feel good, relaxed, easy going, both socially and emotionally. Paxil did work for me — I was depressed, then I took the Paxil and wasn’t depressed.

I did feel better then than I do now, but I’m dealing with myself and life differently now, being more honest with myself — not ignoring my emotions by taking Paxil. My life is a hell of a lot harder now than it’s ever been, but that’s the choice I’ve made. Real life can’t be easy all the time. It’s work.

Instead of taking a pill, I’ve decided to face life more honestly and actually identify and work through the underlying issues that caused me to feel depressed in the first place. It would be a hell of a lot easier to start taking Paxil again, but I want to build a foundation of emotional health that is real, not neurochemically induced.

That’s my personal choice, and it’s definitely the hard road, the road less travelled. But I’m giving it a try (it may take years), because if I do managed to live a healthier life where I don’t feel depressed all the time (it’s still a battle for me), it’ll be because I’ve worked on developing more positive and healthier attitudes towards myself, towards taking the action of taking care of myself.

Only in the past few months have I realized that I’ve never really taken care of myself, never really been honest with myself about how I feel about myself. It’s like I’m just beginning to come out of this life of denial, of pretending I was happy when really I wasn’t, of thinking having adventures and having money or being in a close relationship would make me feel good about myself — which they can do, but not in any real way. I was desperately using everything and everyone else to fill in a spiritual hole that was (and is) inside me. I have always used people as a distraction from myself, from looking honestly at myself and my life. But it’s one of those things — if you don’t love yourself, a million dollars and the most wonderful husband or wife in the world won’t make any difference in the end.

So for me, that’s what it’s come down to. Learning to accept myself, to care about myself, to be honest with myself. And it means facing reality and taking responsibility for myself in a way I never have before.

And most days I am scared shitless. Every day is like the first day of school because I’m having to re-learn everything, the simplest things about living life. I battle with depression, because I’m in a battle with my self-esteem, with feeling good about myself. I feel socially awkward and unsure of myself because this is all new ground for me; I’m learning as I go. I have chronic muscle tension and pain and bad headaches from either stress or the effects of my Paxil withdrawal (the jury is still out on that one). My self-confidence, or easy-goingness, isn’t so hot. And, taking responsibility for myself in way I never have before (that is, not using someone else as my drug of choice), I feel sad and lonely about 90% of the time, like I’m about to go into a panic any second if I can’t find someone to be with.

Sounds like I should be taking Paxil, doesn’t it? But I’m not. What all this means is that I’m just now beginning to be honest with myself. I’m not going to feel like this the rest of my life. But right now it’s a part of what I have to go through to get to a better place, a more realistic, balanced, healthier way of living. And, speaking just for myself, that means a life without Paxil. It means really taking the time to take care of myself, for the first time in my life.

It’s a completely different way of living for me. I feel awkward, nervous, insecure, socially inept, unsure of myself all the time, unable to have a spontaneous reaction to anything or anyone, conversationally a big fat zero, profoundly silent, sad and lonely like I haven’t got a friend in the world, losing count of how often I just don’t want to face the day, and the muscle tension I feel is so constant, I don’t think there’s been a single minute in the past year and a half where I haven’t been in some kind of physical pain. Pretty good, eh?

But I am so glad to be here. Because even though the quality of my life is probably worse now than it was before Paxil, it’s more honest. My physical and mental health may be improving at a snail’s pace (sure feels that way most of the time), but at least this time it’s for real. Life isn’t easier, but it is better.

Postscript (March 2003): I was deeply disturbed by my Paxil withdrawal experience, and this blog is a product of that experience, of the state of mind I was in. Although I would use different language to describe it today, the story would be the same. The pure hell people are going through because of this drug, the lives that are being destroyed — none of that seems to have changed. GlaxoSmithKline, with its eyes on the billions of dollars in sales, continues to disregard the welfare of people who experience severe paroxetine withdrawal; they have yet to provide the medical community with sufficient information on this drug. As for general practitioners, who prescribe paroxetine more than anyone else, they seem to be just as ignorant as they have always been, not that I blame them (though some could still use a lesson in humility). Very few doctors have the time to research the facts for themselves; the majority of general practitioners are left to believe whatever GlaxoSmithKline tells them. So generally speaking, it is the same old story. People are still taking this drug, unaware that it could do them much more harm than good. My story of paroxetine withdrawal could be told a thousand times over today, and it probably is. I hope Paxil Free continues to provide comfort to those who really need it. Take care.

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.

Peter wrote:

Well, it’s day 9 on 10mg from 15mg and it’s like the 4th of July in my head. The zaps appear when I move my eyes. They still squeak too. Everyday when this crap begins, oh, and it’s funny how it doesn’t start until around 3-4 p.m. I’m so tempted to just take another 5mg and this will all be over, but I keep telling myself, “I’ve made it this far, let’s try another day.”

Here’s hoping for “zapless” days once again.

My response:

As someone who has been there (and back), let me tell you that it will get better, but it’ll never get better as fast as you want it to.

But if the zaps don’t kick in until around supper time, that’s a good sign. As you go on you may experience some days of extraordinary clarity of mind and other things related to “The Paxil Window.” That might last for awhile and then as the window closes you might get hit with the zaps again. It’s a roller coaster at times.

I took Xanax (Alprazolam) on the days I didn’t think I could take it, but I just wanted you to know that if the zaps aren’t kicking in until later on in the day, that means that the end is getting nearer.

Speaking as someone who’s been there.

First response:

Just hearing from you, that if the zaps only come later in the day that it will be better soon, well, I nearly cried with joy. I was so happy to hear that.

Thanks you.

This is something I wrote in an email today. I don’t have the energy to explain the context of the conversation, but basically it’s about the paradox of beginning to feel healthier, having survived my withdrawal, but instead of feeling better, I feel an apprehension, not necessarily a resurgence of depression, but a kind of insecurity.

I wrote:

“At this point in my life, recovering from my Paxil Experience and about to return to life as I used to know it, I feel an apprehension, a feeling that the foundation I used to stand on, my personal history (which has been sort of blank since last July when my withdrawal began), that my history (the experience that makes us) isn’t there as firmly as it used to be. And it’s almost as if the healthier I become, the more insecure I feel.”

First response:

I can understand wanting to get back to “normal” in a hurry, but sometimes it just doesn’t work like that. Slow for someone else may not be slow enough for you. The one thing I have learned is that I now take as much time as I need to get over some things. Like at this point in my life I am still kind of getting over the shock of how the person I was seeing before my withdrawal experience ended our relationship. It has been about a year and a half and I am just now slowly beginning to trust people again. That is how much time I needed for it and maybe even a little more.

Do you know just this past year I have met men that actually admit to crying? I know it feels bad but it is really a good release. I do think from reading your posts and what you’ve just said that you need to say “stop” and try to start with the little things, like how the sky looks. I still have this “awe” for things, it’s so hard to explain.

One of the psychological side effects of feeling alone and being alone throughout most of my withdrawal is that every human contact, however slight, takes on the greatest importance. Actually, you don’t have to be alone throughout your withdrawal to feel this way. All you have to do is live through it.

One of the worst things for me about my Paxil experience is that I need people more than I normally would, but that when most people get a whiff of that need, they flee, they disappear, etc. I know this. I understand this. And I hate it that I am in such a needful condition, that I need people so badly now (eight months now since my initial withdrawal, and I still don’t have my life back, myself back). When I don’t hear from someone for awhile, it doesn’t take me long to miss my contact with them. I hate admitting to this. I hate being in the state I’m in.

There’s no dignity in what my withdrawal has put me through, in any of this, and I just want to go home to a place where I can rest. I have often wished that that place of rest was with someone, someone I could touch, someone who is really there for me. But it’s not. And it’s so hard sometimes — it’s been so hard — not to have that kind of home. I just don’t know how much longer I can last like this. Definitely a bad day for me.

First response:

I, too, find myself needing people more. I wish someone would just touch my shoulder and say, “Hey, how are you? I am glad that you are here.” But no one does that, so I feel really alone. My so-called friend of years asks me what’s new, and I mention lightly that I have been through a depression — and that was the end of the emails. At least there’s paxilprogress.org

I spent a solid seven months withdrawing and recovering from Paxil. Only recently have I been able to get on with my life, or at least begin to take the first steps. I feel confident in moving forward, but at the same time I feel uneasy. It’s as if I don’t know if I’m the same person I was before all this began. Has anyone who has survived withdrawal experienced this apprehension?

Sometimes I seem to slip into a state of shock when I’m struck by the fact that seven months of my life were consumed by withdrawing and recovering from Paxil. I become almost bawled over by a tremendous sense of loss. It’s emotionally numbing. The more I get out into the world again, the more I realize how much of my life I’ve lost, and it doesn’t feel so good; it’s surreal and sad at the same time. I should be feeling good that I’m getting on with my life after the Paxil withdrawal, but all I seem to be feeling is this sense of loss. I didn’t expect to feel this way.

First response:

November 3rd, 2000. That was the day I ingested my last Paxil pill (I was down to 5mg for a month). It was a day of celebration for me! This was my fourth and last attempt to leave that fog I was in. My family couldn’t understand why I was so excited. They have been supportive but I don’t think they can truly understand! Since that day I have experienced a whole new set of problems, I would say at the neurological level.

I understand how you’re feeling. Everyone that has suffered bad effects from Paxil have had differences, but we have all suffered. I’ve read stories about people who feel great after finally getting off. I am not one of them and you may not be either. I can’t measure my recovery day by day. I can only look back from month to month and see improvement.

I sense you are strong and determined to get better and that’s part of it. I am better than I was three months ago, but I still feel I have a way to go. Please keep telling yourself you can do it. There are us out here that are willing to support you.

Second response:

You’re where I was after I spent one solid year trying to recover from the withdrawals of Paxil. One day I declared that it was officially “over” (little did I know), and then was overcome by the most profound grief I had ever experienced. Not only did I mourn the amount of time I’d spent being in hell, but I was mourning some part of me that I felt had been robbed — eradicated — by Paxil. I felt disconnected to a world through which I once moved so swiftly and easily.

I now viewed the world as a hostile environment; after all, the doctor I had trusted lied to me and coerced me and then betrayed me. I no longer had my innocent trusting nature. I felt as though I had been held hostage and was now released into a world that I didn’t like very much. It was the most devastating experience of my life.

It took another year for me to comprehend what true damage this drug had done to me and with each realization I became madder and madder (at least that was better than sobbing every day). Someone told me that my anger would get me through it quicker than anything else because it seemed that I was going through the stages of grief that one experiences when a loved one has died. It took another year for me to get to the acceptance stage, albeit reluctantly. I was not happy that I’d been changed, but I just kept telling myself that it was okay — there were still plenty of things for me to do besides what I did in my previous career.

So you are not alone. I think all these feelings, troubling as they might be, are perfectly normal. We have been robbed of a period of our lives and we can never get back even one day that we spent with the headspins, the visual lags or the zaps. So good to hear your update. I wish it were more positive, but I do believe that you will still continue to get better as time goes on.

Third response:

I’m so glad you posted this. Here’s why:

During the worst of the withdrawal symptoms, I called around trying to find a good talk therapist because I felt so upset — I felt I’d benefit from talking with someone about this. I saw someone this past Tuesday. It was just a consultation appointment; I like to check these people out first before getting into my feelings. What really took me by total surprise was that very intense emotions welled up inside me and came out in that brief session. I even cried! I couldn’t believe how hurt and sad I felt. I told this therapist that I had no idea all these feelings were so intensely deep inside and that I wasn’t sure what to do with them all.

She was a DUD therapist and didn’t offer even a glance of empathy, so that made it all the more painful. But, I discovered during that experience that I’m grieving a tremendous loss and feeling of having wasted years on this medication. My feelings are just incredibly intense regarding my concerns about what this drug may have done to me. It’s overwhelming at times.

Know that you’re not alone. I’m so glad you shared this.

Fourth response:

Yes, I identify with your feelings a lot. I wouldn’t be surprised if many people feel a grieving over their experience. Just wait: some dorky psychologist will coin the phrase “Post Traumatic Paroxetine Disorder” to address this. I hope not, but there is a need for a time of valid grieving in my opinion. It would make sense.

There has been tremendous betrayal and loss with the experiences we share. We’ve been abused by the drug industry, basically, and cheated by our doctors, who should have known better. And yes, as you put it so well, the time and the life we’ve lost and the horror and fear we’ve experienced during withdrawal have been great. I alternate between feelings of grieving and sadness — and feelings of anger towards the medical “profession” (along with plenty of mixed feelings towards friends who were far from friendly with me during my withdrawal). I’ve really lost respect towards the medical profession in general. I think it’s become so specialized that the right hand doesn’t know what the left hand is doing, and we’re all suffering for it. Plus, no one in the profession really holds peers accountable for their actions. Their little comradery on the golf course is more important than the ethics of their job.

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.)

JULES: We should be fuckin’ dead now, my friend! We just witnessed a miracle, and I want you to fuckin’ acknowledge it!

VINCENT: Okay man, it was a miracle, can we leave now?

Friday, January 26th, 2001 (87th day off Paxil). A journal entry:

I’m still trying to get used to the feeling of being in the land of the living again. I’ve been gone for a long time — on a trip that I never chose to take and wouldn’t wish on anyone. The feeling that, Holy shit, I’m still here — alive. It’s a feeling that will take some getting used to. It’s not going to happen overnight. Jesus, I shouldn’t be alive right now. And here I am.

The best I can do right now is to put one leg in front of the other (and not to dwell on anything for too long). To look forward, and to walk forward. Not walk fast, but forward. It’s not just the best I can do; it’s all I can do.

I guess it’ll have to do, but because I don’t think I can do anything else.