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energy and attention for such a long period of time that (from page 240): “they feel, on the one hand, cut-off or withdrawn from the world, on the other hand immersed, or engrossed, in their illness,” a feeling which I’m sure anyone living with paroxetine withdrawal can relate to.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

Hi everybody,

I want to reproduce a short exchange Matt and I just had in case you missed it.

Me:

By the way, the zaps, which for me were in my eyes, behind my eyes and in my head, and for others can spread to just about any part of the body (e.g., the face, arms and legs, etc.) — if you look up the paresthesia of sensory epilepsy, you’ll see that the electrical sensations and the pattern of the surges are remarkably similar. The surges begin with one overwhelming surge and then continue, dissipating in strength, but in a continuous rhythm, in waves. I’m talking about SENSORY EPILEPSY. Sound familiar?

Matt:

I work in the area of disability — and recently had a presentation by a colleague on epilepsy. She said the jolts people experience on falling to sleep (big with Paxil usage) are called clonic seizures and are a form of epileptic activity — I’m sure the zaps are too. I don’t want to scare anyone with this — because we all have the propensity for this as we are all “electric” — I just thought it explained a lot.

I think it explains a hell of a lot too (especially since I noticed that the zaps, and now, since I got off the Paxil, my hypersensitivity to unanticipated sound, occur with greater frequency when I’m trying to go to sleep).

Take note: Within this short exchange, Matt and I have proposed an hypothesis. It’s an hypothesis which probably, when compared to the current medical literature on paroxetine withdrawal, is at the cutting edge of the medical research in this area — which isn’t hard to believe once you consider the general ignorance of the medical community with respect to paroxetine withdrawal.

The similarity between epileptic activity and the paresthesia of Paxil withdrawal cannot be just coincidence.

Randy said:

I saw a psychiatrist yesterday for the first time ever. Of course he doesn’t know of Paxil withdrawal to any degree. He wanted to talk about my birth experience! He does not agree that my symptoms are due to withdrawal and wants to talk about my early childhood and relationships. F*** off! What’s the point!

My response:

Tell me about it, man. When I began weaning off Paxil, I decided to do it under the supervision of a shrink — not a psychologist, a psychiatrist. As a medical supervisor, he knows what he’s doing. He, like many psychiatrists, knows how to deal with a psychological problem with drugs. If you feel this, take that. If you feel that, take this. Utterly useless. When he actually does have an insight, it seems to be something right out Psychiatry for Dummies. Talking to my dog is more therapeutic.

This guy I’m seeing comes from an older generation of psychiatrists who seem to work under the principle, Give the patient a pill and see what happens. Don’t bother talking to him. Don’t bother really listening to him. Don’t bother trying to understand him as a person.

Our health, diseases, and reactions… can only be understood with reference to us, as expressions of our nature, our living, our being-here… in the world. Yet modern medicine, increasingly, dismisses our existence… seeing our diseases as purely alien and bad, without organic relation to the person who is ill.

The psychiatrist I’m seeing now seems to work with “the idea that one must attack the disease with all the weapons one has, and that one can launch the attack with total impunity, without a thought for the person who is ill.” (Awakenings, continued from page 228, 1990 edition.)

Whenever I show any strong emotion in front of this man, his immediate reaction is, “Perhaps you should think about trying another anti-depressant.” It’s as if he can’t deal with real people. Forget about actually listening to me. Forget about the fact that I’m an actual person and not some chemical reaction gone awry. I’m able to trust this guy (or at least give it a try) and show him my feelings, and he wants to pump me up full of pills — more pills. This was the antithesis of therapy, folks.

Therapy comes from the Greek word therapeia, which means healing. I reach out to this psychiatrist for help, and he wants to give me a bottle of pills. He’s making his hundred dollars an hour off me, but I wonder if he’s doing anything else. Trust me on this one: the ancient Greeks are turning in their graves.

I’ll continue to see him so he can medically supervise my withdrawal from the Paxil, but as soon as I’m feeling raring to go, I’m gone. This man has made a living for the past thirty years by not listening to people who need to be listened to, who are in need of that healing (paxilprogress.org is so much better). People turn to him thinking that he’s helping, but mostly he’s just make a living off them. It’s kind of hard not to think that sometimes.

I’ll be seeing him probably at least another three or four times, and who knows, maybe I’ll get something from it. Perhaps if I can package my problems in an intellectual manner which he can grasp more easily, I might actually be able to get something useful from these conversations.

So, from what I’m hearing from other people, and from my own experience, I’m inclined to believe that psychologists are the best bet, because they don’t rely on medications to solve the situation as quick and easy as possible (easy for doctors, not us). I think a psychologist is more inclined to listen whereas a psychiatrist is more inclined to prescribe. They are two completely different approaches to healing. And in my opinion, one of them works and the other one doesn’t.

You could probably have the same experience you’re talking about with a psychologist, but I think the chances are less likely. I say this from my own personal experience. My experience may be rare or it may be common, but I think it’s probably more common than not.

You said, “What’s the point?” And I say, “I know the feeling.”

On trying to get off Paxil, did anyone’s doctor switch them over to Prozac? I’ve been reading a pile of medical journals and articles today that recommend that doctors do this for patients having difficulty getting off Paxil. I’m just curious if anyone has done this and if it worked…

Response:

Yes! I have just begun this process this week. I am on my 4th day of taking 10mg Prozac as I slowly taper off Paxil. I have been on Paxil 20mg/day for more than 4 years and have tried to get off it about 5-6 times over the past 2 years, only to experience the severe withdrawal effects that were intolerable for me when I got down to 5 mg.

About 3 weeks ago I found several message boards that let me know that I am not alone in this struggle to get off Paxil. Because I could not get any medical support about this, no one knew what I was talking about. And by the way, I only recently started going to a new doctor, who has been very agreeable to help me with this. I have talked to several doctors, pharmacists, psychiatrists, and a physician’s assistant who works in a drug rehab clinic, and have some references that recommend this method. Titrate each medication: one up (Prozac), one down (Paxil).

The best reference I have found about this is the Journal of Clinical Psychiatry, 1997;58 pages 37-40. The article is “Clinical Management of Antidepressant Discontinuation.”

I understand why this method would work, that is, it makes sense, as long as it is combining very low doses. I am down to 5mg Paxil for the past 3 days, with only 4 days of Prozac 10mg/day so far in my system, after doing 10/5/5/10, Paxil only.

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.

Anne said: “I have a test Monday evening, and I am having a hard time trying to get into it.”

Since I’ve been weaning off the Paxil, I’ve been bunked out in my parents’ basement, living with them way out in the country, not doing much of anything, not seeing much of anyone. I was about to enter the second year of my graduate programme when, following my doctor’s orders, I tried to get off the Paxil cold turkey in early July, and my life hasn’t been mine since.

The stuff that I study in university takes some heavy duty brain power, and I knew that I’d never be able to perform at the expected level, so I managed to get a leave of absence from my programme for this year. If I hadn’t been granted a leave of absence, by now I would have failed out of the programme, without a doubt.

All I meant to get at here is how amazed I am that anyone can live a normal life while going through Paxil withdrawal and post-Paxil withdrawal. As well as I’ve been able to keep it together, I don’t think I’d be able to do it if my parents weren’t letting me live with them rent-free and if I hadn’t gotten the leave of absence from my programme.

I give a tip of the hat to anyone who has managed to live a relatively normal life while going through all this. I don’t know how you do it.

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.