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energy and attention for such a long period of time that (from page 240): “they feel, on the one hand, cut-off or withdrawn from the world, on the other hand immersed, or engrossed, in their illness,” a feeling which I’m sure anyone living with paroxetine withdrawal can relate to.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

From Joe:

I took 20mg of Paxil for three years for panic anxiety disorder. I only had a few weeks of side effects at first (nausea, vivid dreams, and then of course the sexual side effects), but then it was great. Not obsessing about things, everything was brought into a healthy perspective. However, as time went on I started not to care about anything. It went too far — a real flat effect, chronically fatigued and, of course, the worst for me, I gained 45 pounds.

I had no idea about the withdrawal. The drug company, GlaxoSmithKline, does not warn you about that. If I would miss a pill, I noticed I couldn’t even turn my head, my eyes wouldn’t follow — it was awful. I couldn’t wait until my next “hit” of the drug, and then guess what? — all the symptoms would disappear. (I should have known my body was addicted then, but on Paxil you just go through life not giving a damn about anything, so who cared?)

I think the longer you are on it, the worst these symptoms are. Coming off has been very rough. It has taken me since September to get to 3mg a day. I usually tell people who visit paxilprogress.org that at least you know somewhat ahead of time what to expect. I knew nothing but what my MD and pharmacist told me: “It’s a safe, nonaddictive drug. You won’t gain weight. It won’t effect your blood pressure.” (I’m hypertensive.) All proved not to be true.

Having said all that, however, if you are having trouble with depression, anxiety, panic etc., and it’s acute right now, paroxetine can help you to get relief from those symptoms and to lead a normal life for a time. And when it’s time to go off, just wean slowly. This gives the poor brain a better chance to adjust to “life without Paxil.” Good luck.

Someone said:

“Do you think how one gets off Paxil depends on why one went on it in the first place? Like if someone went on it for bad depression as opposed to someone (like me) who went on it for other reasons than depression? Maybe that is why it was easier for me to get off it?”

You’re probably right. The longer you were taking it probably makes it harder to get off it too.

Also, I’m not sure about this one, but anyone who manages to wean themselves off the Paxil slowly is, perhaps, less likely to have a rough ride — as opposed to someone who found out the hard way by trying to get off Paxil cold turkey and ended up having go back on it and start all over again.

I followed my doctor’s orders and stopped taking the Paxil cold turkey and went through a week of pure hell. I think that experience was such a shock to my brain and my neurochemistry that my nervous system has never fully recovered and, subsequently, the weaning process has been more harsh for me than it would have otherwise been.

I was given Paxil because of post-traumatic stress that I experienced last year after, well, a traumatic event. But even before that, although I’d never taken an antidepressant until Paxil, I used to have periods of mild depression, and I’ve had them all my life. Perhaps that indicates some slight chemical imbalance, or maybe it’s just a part of the personality I have, which is that I have a tendency to think about things way too deeply.

I may not have the most normal or average personality profile, so maybe there is something a little bit out of whack, neurochemically speaking. But I think this slight out-of-whackness may account for my having the personality that I have (and I wouldn’t want to be anyone else). And it’s these little details, these quirks of personality, which I think may influence how someone reacts to getting off Paxil — and which are completely overlooked in the generalizations that are proliferated in the current medical literature.

Some people may be slightly predisposed to having a rough ride getting off Paxil.

And then there are people who have had chronic depression or severe depression (the two are not necessarily the same), an obsessive-compulsive disorder, or some other psychological or social disorder their whole lives, and who have probably taken other antidepressants before Paxil came along and will probably continue to take antidepressants their whole life. If anyone is going to have a hard time getting off Paxil, I would think this group must be at the top of the list. But I don’t know.

I think what a person was prescribed the Paxil for probably does plays a part in how well they’re able to get off it. And a lot can be explained by that. But there are other factors.

Personally, I have always had a low tolerance to any kind of drug. For instance, although I don’t drink caffeine or alcohol anymore, I can get pretty close to drunk off two beers. Whenever I found myself in a situation where someone passed me a joint, one drag and I’d be complete toast. Half a cup of coffee and I am zooming. I have always been like this.

So when someone with this kind of metabolism throws Paxil into their system — it’s no wonder it’s ruined my life. It’s no wonder that stopping Paxil cold turkey (imagine that, going cold turkey!) nearly killed me. The post-traumatic stress I was experiencing just before I started taking the Paxil was dealt with very effectively through communicative therapy, and nothing of that experience is an issue for me anymore. The continuing trauma of the Paxil withdrawal — now that’s another story altogether. I think I could have had a relatively smooth ride, but my doctor’s advice to stop taking the Paxil cold turkey was the wrong advice, and I wish to hell I hadn’t listened to him.

That’s my rambling take on why I have had a rough ride. I think it could have been avoided. But like you said, some people will inevitably have a rougher go at it. It is so important for people to be as well informed as they can be about this junk. When I initially took Paxil, and when I followed my doctor’s advice to go off it cold turkey, the principle of informed consent was completely ignored.

Hence, I have this overwhelming desire to sue GlaxoSmithKline for deliberately misinforming and not informing doctors and their patients of the withdrawal effects of Paxil. What can I tell you? I’m human.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

First response:

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

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

Second response:

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

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

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

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

Third response:

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

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

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

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

Fourth response:

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

Sarah wrote:

I have been off Paxil for 10 months now, and I still get very upset for no reason. I would assume most people don’t after getting off Paxil, but I do! I had a very, very hard time getting off Paxil, and I never wish to go through that again.

Paxil changed my whole personality when I was taking it, but when I got off Paxil, I found it very hard to find the personality that I once had.

Through reports and research that I have done on Paxil, this seems to be a common factor. They don’t know why or how. But I will tell you, and you probably already know, Glaxo SmithKline has yet to accept any responsibility. Through reading and studying about Paxil, there seems to be many changes in personality that do take place. Read Medscape on the internet for any update information. It is a very informative database.

They have definitely proved that it is addictive, and it is like Dr. Breggins says,”You don’t know what these types of drugs are doing to your brain,” and it does not look very promising.

To this day, I still think Paxil affects me. After I went through withdrawal from Paxil, and I mean the withdrawal from hell, I felt quite good, but as time went on, I starting feeling weird, and different, like the problems associated with Paxil are forever here to stay.

I could say maybe I just need a little bit longer, but to be quite honest, I’m not convinced that Paxil did not do anything to my brain. I do believe it at least partially destroyed the serotonin site of the brain. I really think I lost the ability to release the serotonin I need, which plays a big part in your emotions.

The things I could tell you about Paxil would blow your mind. This drug is not magical. It is really a destructive drug! I would tell everybody not to take it, and of course I have studied so much about it, that now people are starting to ask me about the drug, and what problems it causes.

Paxil can get you to the point that you just can’t think right.

If only I could emphasize how bad it really was, I would do everything in my power to do so.

My doctor now, who took me off Paxil, knew the dangers of Paxil when it first came out, and I think it was 1992. He noticed a pattern among his clients that were taking Paxil, was not pleased with the results, and he stopped prescribing it. He tried to tell doctors, but they thought they knew it all.

Now though, since I came back, I got off Paxil successfully with my doctor’s help. Thank goodness for doctors who pay attention! My doctor has asked me to explain to other doctors, PhDs and counsellors with their Masters, about the dangers of Paxil, and why it should not be prescribed, and you would be amazed at what these so-called educated people don’t know. When I talk to them, I honestly have to explain what I mean, regarding Paxil. I was totally amazed! They have no idea of what Paxil can do.

Well, sorry about the long explanation, but yes, with Paxil, and after Paxil, I can get very angry. I am just not myself anymore.

In response, I wrote:

I can definitely relate to the anger situation. It didn’t kick in for me until I got down to around 5mg, but when it did I felt like I was about to kill anyone who tried to have a conversation with me. This lasted for about a week, and during that week I stayed away from people completely. Though most of that anger has passed, my tolerance for listening to certain opinions seems to be zero. I’m not as patient as I used to be.

I’ve been completely off the Paxil for about two weeks now (approximately two weeks; could be more, could be less; my sense of time is a bit out of whack). The closer I got to being completely off the Paxil, the more positive reactions I had. My sex drive (and endurance) suddenly reappeared — it was like I was in my teens again; intellectually I became more alive, reading and writing and with great bursts of energy; I began to feel more relaxed, more myself. All kinds of good stuff like that. I was still experiencing pretty bad withdrawal, but the moments of clarity were amazing and rejuvenating.

Since I’ve been off the Paxil completely, my withdrawal symptoms have not disappeared (digestive problems, sleeping problems, electrical sensations connected to my eyes, etc.), but they have gradually dissipated. I haven’t had a brain zap for two days now, although I am still a little wary of them.

I’ve heard other people talk about how they return to normal and feel ten times better once they get off the Paxil. I certainly had a few glimpses of that, but right now I wouldn’t say that’s how I’m feeling. Sex drive, intellectual vitality — all that stuff seems to have taken a back seat to what I’m going through now.

The last few weeks have been extremely emotional for me. And now, instead of experiencing some sort of rapture from having gotten through all this, if you asked me what I’m feeling, I would say I’m feeling nothing. The only thing I can think of is that I’m emotionally spent; I’m all used up, and I just don’t have the energy to feel emotional about anything. (Or maybe I’ve got one last motherload of anger and grief to let loose, and I just don’t want to be around for it.)

That, or I’m afraid to let myself feel… relaxed again. Like I can’t believe it’s over. It’s as if I’m afraid to let my guard down, to really let myself say, “It’s over.”

The other conclusion could be that I’m depressed again, but I don’t think so. I think I’ve been through a prolonged traumatic experience in trying to get off the Paxil, and even with the Paxil out of my system, psychologically, it’s left a mark on me. I’d like to say it hasn’t, but it has. I would like to jump up and down with joy, yelling out, “I made it!” But I can’t seem to let myself do that.

I’m not sure about any of this though.

I would like to hear from others who, even if your experience isn’t the same as mine, have gotten through this stage of withdrawal, or post-withdrawal…

Second response:

Boy, I couldn’t agree with you more. I know beyond the shadow of a doubt that I will never be the same after taking this drug. Thank you for telling it like it is. The more research I do, the more freaked out I get about what this shit may have done to my brain. Don’t expect GlaxoSmithKline to own up to any of this; after all, they’re the ones who said it was not addictive. I know one person who took Paxil shortly after it came out. She was a zombie while on it, and went completely ballistic trying to get off. Years later, I realized that this person had changed dramatically, and not for the better. Getting off this drug is only half the battle. The other half is reclaiming the lives we had before Paxil.

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.

Paxil should be an absolute last resort. Communicative therapy (a.k.a. talking) should be tried first. Then there are dietary changes that can make a difference to all kinds of anxiety. You can take vitamin supplements like B-complex to begin with. If you drink caffeine, stop now. Alcohol and cigarettes don’t help with anxiety either (but if you smoke, don’t try quitting while you’re trying to quit something else; trying to quit two things at once will wreck anyone). Making sure to get daily moderate exercise can make a difference. Try a herbal remedy. Listen to good music. Breathe fresh air. Get out in the sunshine.

Speaking from experience, these are basic things that can make a huge difference.

But it’s easier to pop a little pink pill than it is to actually make any real effort to take care of oneself (hence, we have close to two billion dollars in sales of Paxil last year).

It’s easier to take a pill than it is to actually face the fears underlying the social anxiety.

No offense to anyone suffering from panic disorder, but “social anxiety” sound like another made-up term by drug companies. I’ve been shy my whole life. I know what it’s like to be anxious around people and or large crowds. But that doesn’t mean there’s something wrong with me. I consider it a natural reaction to the madness of crowds.

Working to ease my shyness took some time, and although today I am aware that I do have this tendency to become anxious in social situation, it doesn’t bring everything I want to do with my life to a halt. I value all of my relationships and I am glad to be around the people I choose to be friends with, but I also know when I could use some time alone. I may have a certain shyness to my personality (although most people who know me socially would probably find that hard to believe), but there is nothing wrong with being this way as long as it doesn’t control my life. “Social anxiety” is a marketing slogan, a stigma that deliberately shames people into thinking they need these medications. It helps sell Paxil and other SSRIs.

If you experience “social anxiety,” it doesn’t mean you’re sick. All it means is that you’re sensitive. Big whoop. There is nothing wrong with being a sensitive person. Screw it — I’ll go as far to say it’s a good thing. My sensitivity has caused some anxiety at times, but it’s also given me a sensitivity to the feelings of other people in my friendships and close relationships which has enriched my life in ways that Paxil never has. I’m more of a one-on-one person; I’m not a group person. So what?

If Paxil is the last resort for you — I am in no way recommending Paxil — but if you decide to take the Paxil, remember that the more you take and the longer you take it, the harder it will be to get off it. If your doctor tells you something different, then your doctor can join the thousands of other doctors who are completely uninformed and misinformed as to the withdrawal effects of Paxil, and you’ll want to go see another doctor immediately. Paxil withdrawal is hell. For a substantial number of people who take it, Paxil is not an easy drug to get off of. That’s the first thing you should know.

The second thing is, if you do take the Paxil, don’t just rely on the Paxil. If it provides you with some kind of calm, take advantage of that calm and work on your anxiety. (I know plenty of people who take Paxil and then sit on their butts the whole time, never taking any action to actually deal with the anxiety or depression they had in the first place. All they do is take Paxil, and within months they begin to take on the look of a person who is medically sedated.) If you decide to take the Paxil, it would be beneficial to put yourself in situations where you can develop the coping skills (sometimes known as social skills) to ease the anxiety so that you can be relaxed and be yourself where before you used to feel anxious. If you don’t do this, and eventually you want to get off the Paxil (and seeing how hair loss and sexual dysfunction are common side effects of Paxil, you may not want to live with it forever) — when you try to get off the Paxil, all of the anxiety will come back, and on top of the effects of Paxil withdrawal, it’ll probably come back with a vengeance.

So if you do take the Paxil, do it right. And be informed.

Hope that helps.

Response:

I would like to tell a story which I think some may find more informative than your message.

While this drug may or may not help people, it does fall under a new classification of “life enhancing” drugs that has only really been around for the last 30 or so years. The aggressive marketing of this drug towards the general public is at best circumspect and possibly heinous in its design and implementation. In reading some of the legal documentation of the lawsuits currently in the courts, I noticed that Glaxo SmithKline refuses to accept the term “withdrawa” and instead uses only the term “relapse” in their dealings with plaintiffs. I know what I went through (and what most EVERYONE on this board is either going through or has been through) was a “withdrawa” from a drug.

Now the ethical question: Does the fact that a drug company knowingly refuses to use a proper term in order to protect themselves legally outweigh the use of a term of demeaning tone and inference, especially when it is used to describe the said product whose usage, after stopping, made me feel like “crap” (there are worse terms) for several months afterwards and most importantly: which use of language is more justified?

You see, it isn’t the situation that is the problem, but the language (and the fear of the language) that hides the problem.

P.S. (Sept. 2006): I seemed to have no problem giving advice in this post. I’ll be making some cuts if I find too much of that going on in future posts. I question how qualifed I am to give certain advice. Some people do have serious social disorders that require medication; otherwise, they couldn’t function. I wouldn’t want to be dismissive of that. My life is still affected by my so-called social anxiety. It does hold me back at times, and I’m not happy about it. But I’ve managed to live with it. It’s a part of who I am.

This is an email message I wrote to a professional counsellor I was seeing this past year (just wrote it today).

I went through some traumatic events this past year that eventually led to my taking 20mg of Paxil every day. The Paxil helped get me through the year. After I got my life back on track, I decided I didn’t want to be on the Paxil anymore (I didn’t want to be on it in the first place, but I was completely desperate at the time, and it did work well for me). So my doctor, who has been a good doctor for me and who I trust, said I could stop taking the Paxil cold turkey. He said I might have mild nausea, headaches, a little dizziness for a couple days, but that it would go away. (How many of you are laughing at that sentence?)

About six days ago, I stopped taking the Paxil. And for the past three days I’ve been barely functional. For the past 72 hours I’ve experienced these wonderfully debilitating electrical surges in my brain every time I move my eyes. (Try going through a day without moving your eyes.) I feel like I’m losing my mind.

Here’s the email I just wrote to my counsellor:

I have done some research in the past 24 hours. I have acquired information from people who have personally experienced Paxil withdrawal and from professionals in the field.

I have learned the good and the bad about Paxil, and I am astounded by the fact that I was never warned of the possible withdrawal effects — these are extreme reactions, but they are common. (The long-term effects of taking Paxil are unknown.) All the studies I’ve read (i.e., the ones not sponsored by the makers of Paxil) show that at least 35-50% of the people who take Paxil cannot go off it cold turkey — and incredibly the majority of physicians say it’s okay to do just that.

But when 35-50% of the people who follow that medical advice experience electrical surges in their brain which are debilitating for weeks and even months afterwards (and I’ve only had it for 3 days), one begins to wonder about the wisdom of our physicians. Where are they getting their information?

The Paxil may work initially, but for a significant amount of people who go off it cold turkey like the doctor ordered — it’s destroying their lives. I’ve read at least ten articles in the past 24 hours about people who took Paxil for relatively mild depression like me, then became almost psychotic after they stopped taking it. These are the poor bastards who didn’t have a support system of family or friends to get them through it. And that’s not counting the suicides.

I’m doing my research and I’m checking my sources, and what I am learning will come together — and I will do everything in my power to inform the public of the dangers of this drug. It’s killing people, and if I hadn’t been lucky enough to have people to support me through this, I’d probably have a gun to my head right now. This is not mild dizziness or nausea or headaches — this is insane. I have had a taste of what that’s like now, and I wish I never knew.

But now that I do know, I’ll do everything in my power to prevent something like this from happening to other people.

My doctor opened up a book and said, “Oh yeah, you can go off Paxil cold turkey.” He was wrong. The book was wrong. A physician should know better.

I’ll be seeing a new physician soon, and it’ll take me two seconds to know if he knows what he’s talking about. I trusted my doctor, and I truly believe now that he was misinformed. And I’m the one who had to suffer for it.

My life this past year was no walk in the park, but I managed to get through it mostly because of my own determination to live. I like who I am, I care about the people in my life and I’m well-liked by most people who know me. I have a lot to live for. The one thing I did not need was to get a taste of what it’s like to be psychotic.

You might think I’m over-reacting, but let me send a small electric current through your brain every time you move your eyes for the next 72 hours — then we can talk.

Something wrong has happened here. And it happened to me, and it’s happening to other people. How am I supposed to feel about that?

I got a refill this morning and took a Paxil about an hour ago (because otherwise I’ll be losing consciousness soon from the “brain zaps” I’m experiencing every ten seconds). I’m hoping for the best.