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their energy and attention for such a long period of time that (from page 240): “they feel, on the one hand, cut-off or withdrawn from the world, on the other hand immersed, or engrossed, in their illness,” a feeling which I’m sure anyone living with paroxetine withdrawal can relate to.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.

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.

I’ve always been able to deal with the emotional symptoms (e.g., the suicidal feelings) easier than the other symptoms (e.g., the electrical surges). The electrical sensations just about drive me insane. More than any of the other symptoms, they’ve made it impossible to be me and to do what I love to do.

I have felt on-and-off suicidal since my first cold turkey experience in early July. I still haven’t completely shaken the feeling, but I can tell you that it subsides to the point where it’s just a faint echo of what you’re feeling now. You’ll remember it, and in a sense it’ll still be there, but you won’t feel any urge to go through with it.

The only way to get through now it is don’t kill yourself (simple, right?). Your body and your brain are going through one serious motherload of a neurochemical adaptation. You have to give yourself a chance to get through it and to go through it. As you know, there are some sudden benefits to getting off the Paxil — I’d say focus on those right now and enjoy them as much as you can. And the next thing you know, you’ll be feeling crappy, but you won’t be feeling suicidal. And that’s progress. And gradually everything gets better. That’s the only thing I can say with some confidence.

It’s been a long dragged out experience, but a little tiny bit at a time, I’ve gotten better. So don’t kill yourself and you will too. And don’t forget to take plenty of B Complex.

First response:

I am so excited that I can hear from people who are having similar experiences. Five days ago I decided to quit taking 20mg of Paxil. I did minimal weaning, but I had no medical guidance because I have been stealing Paxil from my mother. Anyway, I attend a prestigious university which is very demanding and I cannot, in no way, get any studying done. I’ve only been taking the drug for about four months and after feeling like an emotional zombie, decided I had enough.

However, these tremors and vertigo accompanied with fits of crying is making me nuts. My roommates and supposedly closest friends have no idea how bad this feels. All I wanted was someone to talk to who could relate to my experience at school and they instead turn their heads and go out for a night on the town. They are mad at me for taking the Paxil without a prescription, but where were they a year ago when I sank into my interminable depression? Where were they when they could have stood up for me in my terrible circumstance?

Thus, I’ve come home (thankfully close to school) and I’ve been bedridden for about three days. My parents think I’m lazy and I lash out at them with a newly acquired temper. No one understands! When are the symptoms going to end, and is this paranoia a result of the withdrawal or is there truth in my perceptions? I don’t know. I’m just rambling to pass time during these periods of insomnia.

Second response:

Yes! I remember that the one and only suicidal thought in my life happened after I accidentally went cold turkey off the Paxil. It is right back there as a faint memory but a very unpleasant one. I was at the sink washing some dishes and it felt like my brain was swelling and then the thought that I should get a gun and shoot myself in the head came and it wouldn’t go away, and then I began fighting with myself, wondering what was real and what wasn’t. That is the day I ran to the drugstore and got a refill on my Paxil only because I couldn’t really figure what else it was from.

Doug said to a previous message:

This is an excellent response. I agree. However, I must state that I took Paxil for almost 3 years and it seemingly worked wonders for me… for a while.

The people I know personally (not through email or through paxilprogress.org) who took Paxil for extreme anxiety and panic attacks — every single one of them ended up taking on that “sedated” look I mentioned before. And there’s no way that can be good. All of them say they couldn’t live without Paxil, regardless of the weight gain and the sexual dysfunction it causes them. But neither have any of them done anything else except take Paxil to take care of themselves. They’re still living off coffee and cigarettes like they’ve always done. So, in a way, they got what they deserved. Nothing gets better in the absence of a willingness to change. Taking a little pink pill only delays the inevitable.

The calm that Paxil may provide can offer one the opportunity to work on the anxiety, but the anxiety will come back if one doesn’t actually work on it. This is something I see happening with many people, as well as having lived through it myself. It doesn’t take much to figure this one out.

I agree with you that Paxil can and often does make a difference at first. I have no doubt about it that Paxil did help me at one point; it helped me get through an extreme crisis situation, extreme stress, extreme anxiety, all during a time when my coping skills were not so good. For the duration I was on Paxil, I did everything I could to get my act together — and now, except for the anxiety related to the withdrawal, I do have it together (I hope). When I think of how I was, say two years ago, I am amazed at how far I’ve come, how effectively I deal with anxiety and stressful situations when they come up. I’m not 100% all the time, but who the hell is? (Nobody.)

I haven’t a single doubt that the makers of Paxil deliberately perpetuated a fraud by not fully informing the FDA, doctors and the public of the withdrawal effects of Paxil — to this day they clearly misinform doctors (the ones prescribing the medication) by telling them that Paxil is not an addictive drug, that there is no risk of physical and psychological dependency. Bullshit. And everyone who’s experienced Paxil withdrawal knows it. Like you said, “[It] has been an absolute nightmare getting off it (and there were side effects).”

You said:

I spent a good portion of my life avoiding most social situations, and am finding myself back there again. Only now there is the withdrawal and all of its symptoms on top of that. And I did a lot of work to get over all that when I was on Paxil. So, I’m very disappointed in the overall usefulness of the drug.

The same thing has happened to me. I find that I do experience some anxiety in social situations, or in anticipation of social situations. Not all the time, but when I do, there’s no doubt about it, it’s there. But I don’t relate this entirely to any previous condition. I think it’s due in large part to my Paxil withdrawal.

At the moment I am weaning myself off the Paxil and am down to 10mg (alternating between 5mg and 10mg). At least half of this past month I’ve been a walking zombie. Talk about being out of it; my brain has felt like mash potatoes. The last few days have been surprisingly smooth, but I’m only down to 10mg right now — that’s halfway there. My body is going through an extreme physiological adaptation now. Everything is out of whack. Experiencing some of the old anxiety doesn’t surprise me.

It’s my feeling that when I finally get the Paxil out of my system, and I’m exercising, taking my vitamin supplements and doing all kinds of other good things to keep myself healthy, the anxiety that I occasionally experience now from the Paxil withdrawal won’t be as common; it certainly won’t be debilitating. And the same may be the case for you.

Also, having taken Paxil for three years, even after you’ve taken the last pill, I’m inclined to think that it could take several more months before your body and your brain have flushed all the Paxil out of your system and have readjusted to living without it. Three years is a long time to be on Paxil (any more than 6 months is a long time if you ask me). I think the longer a person is on Paxil, the longer it will take to get over it.

Paxil can play a positive role in dealing with certain types of anxiety, but, again, it should always be a last resort. I can’t see what the good is if trying to get off the drug is worse than the problem you took the Paxil for in the first place. What a scam, ah?

Postscript – February 6th, 2001: In this post, I said, “I think the longer a person is on Paxil, the longer it will take to get over it.” This isn’t necessarily true. Everyone is different.

P.S. (Sept. 2006): Wikipedia has an entry for social anxiety. It may not be a simply a marketing slogan. However, treating social anxiety with Paxil or other SSRIs should be a last resort. Paxil is the easy fix; it requires absolutely no work or will power. So it’s very attractive. But from my experience, the risks aren’t worth it. It’s been almost 6 years since I stopped taking Paxil, and I can still feel the effects of the withdrawal. Here’s a quote from the Wikipedia article:

Research has shown cognitive behavior therapy, whether individually or in a group, to be effective in treating social phobics. The cognitve and behvioral components seek to change thinking patterns and physical reactions to anxious situations. This may be done through a technique called role playing. Prescribed medications consists of a class of antidepressants called selective serotonin reuptake inhibitors (SSRIs). Such treatment has a high response rate and low risk of dependency [sure it does] but has been criticized for its adverse side-effects and possible increase in suicide risk.

Attention given to social anxiety disorder has significantly increased since 1999 with the approval of drugs for its treatment. Marketing campaigns by pharmaceutical companies may be largely responsible for driving this.

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.