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energy and attention for such a long period of time that (from page 240): “they feel, on the one hand, cut-off or withdrawn from the world, on the other hand immersed, or engrossed, in their illness,” a feeling which I’m sure anyone living with paroxetine withdrawal can relate to.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

Peter wrote:

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

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

My response:

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

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

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

Speaking as someone who’s been there.

First response:

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

Thanks you.

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.

I’ve spent the last six months trying to get off Paxil, and I’ve done it. It was the most debilitating hell I have ever experienced. I no longer have the worst of the withdrawal symptoms — namely the electrical surges behind my eyes and in head.

But now that I’m off the Paxil for good, it feels as if my entire nervous system is being rewired — that is to say, it’s painful. My body and my bones feel like one big painful ache. A few years ago I experienced a full-body migraine that put me out of commission for about a week, and this seems very similar to that, except most of the pain is coming from my body and not my head. Also, throughout the withdrawal, I’ve experienced varying degrees of sensitivity to light and sound, but within the past few days, this sensitivity has gone through the roof. Every sound, not just loud and sudden sounds, is filling my system with adrenalin and wiping me out.

I’m wondering if anyone has experienced this during this period of their withdrawal, how long it lasts, what can be done about it, etc. It doesn’t compare to the electrical surges, but it seems to be as equally debilitating.

Man, when is this going to end?

First response:

You hit the nail on the head. Your entire neurological system is rewiring itself. For the entire first year after getting off this garbage, I ached. I felt as if I had aged 100 years. I could do nothing, and I do mean nothing! As for the light and sound thing — it’s very common in traumatic brain injuries, even acquired brain injuries, such as those caused by toxins. There was one point for me where even the wind was too loud. Certain sounds will make my brain feel as if it’s frying or short-circuiting. Certain lights will make me feel as though I’m going to have a seizure, especially those headlights with the bluish tint (like a strobe light). I am unable to drive in traffic at night. I’ve heard from other SSRI survivors that this can go on for several years.

Second response:

My theory is that since Paxil has a dulling effect, that life feels very raw without it. This happens because before Paxil, you were already generally desensitized from repeated stimuli. Paxil hides experiences enough so that you have to get used to the little things again. So give it some time and your senses will adjust to comfortable levels again.

Third response:

I too have a sensitivity to light and sound that I didn’t have before my Paxil withdrawal. I prefer dim lighting and I’m always turning lights off in the house. Other than that I feel much better, just very overweight from this crap.

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

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

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

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

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

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

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

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

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

First response:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

First response:

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

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

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

Second response:

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

From Jane:

For the last 10 days I have been alternating between 20mg and 15mg. Wednesday night I came home from work and after dinner got very dizzy. I absolutely panicked and took 20mg instead of the 15mg I should have taken. Felt better shortly thereafter. Now, I am really worried about being able to get off this damn drug. I went on it due to anxiety and dizziness. How will I ever get off it if this is a withdrawal symptom? I took 15mg last night and feel fine now.

My response:

I don’t mean to belittle what you’re going through, because I think I know what you’re going through, but so what? So you took 20mg instead of 15mg. Big whoop. When I began weaning by alternating, the same thing happened to me a few times — I had to take the higher dose instead of the lower one. Then I felt better and was ready to move on.

The best way to get through this crap is to play it by ear. Don’t lower the dosage until you’re ready to lower it — and you’re not going to feel ready precisely every 7 days. None of this crap runs on clockwork. I don’t think you should feel discouraged because you had to take a 20 instead of a 15. It’s not a setback. You may have to take the lower dose every 3rd day — who knows? You work it out as you go a long. I was winging it the whole time I was weaning, and now I’m off it completely and I’m never going back. It can be done.

As far as I can tell, there is nothing consistent about this process. Throughout my weaning, I had days where I felt great. They were rare, but they were there. Most of the time I felt like crap. Then I had my window of heightened vitality about a month ago where, at least sexually, I felt like I was a teenager again. That lasted for about 10 days or so. Then I was completely impotent. Oh joy oh bliss. About four days ago, I didn’t have a single brain zap; my eyes weren’t heavy, nothing — and my spirits immediately got better, despite still being impotent. Then two days ago I got hit with the brain zaps like I’d never had them before. It was as if my body was letting it all go with one final surge. (Just a theory.) But at the same time, the impotence disappeared. I don’t feel like a teenager again, but I’m back to normal, or at least getting there.

There’s no predicting how things are going to progress. It’s a roller coaster to say the least — and that’s one of the hardest things about it, that it’s such an up and down experience. But it does get better. Sometimes it’s such a slow process that it’s hard to tell if anything is happening. But in the long run at least, there’s progress. You might not notice it yet, but as you continue with the alternating, you’ll eventually see that you’re getting somewhere. Don’t let the inconsistencies and the slowness of the process discourage you.

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’ve been Paxil-free for a few weeks now, but certain symptoms have not completely gone away, namely the short-circuiting electrical disturbances connected to my eyes. Last week I was went through a dull stage where my emotions were almost non-existent. A week or so before that, for about two weeks, I went through the Paxil window, or a peak period of increased all-around vitality. This included sexual vitality as well. I’m 30 years old, but it was like I was in my teens again. No complaints there. That peak period passed, then I had my dull week, and now I’m having a week where things seem to be normalising. At least my emotions seem to be normalizing. The paresthesia and the brain zaps, although still lingering in my eyes a bit, are subsiding. Or at least I hope so. As a result, emotionally I seem to be more stable. I’m still not ready to jump up and take on the world full force, but I’m better (this is an extremely slow process).

So I guess I’m getting better. But what I don’t like is the sexual condition I’m in right now. When I was on Paxil, like many people who take Paxil, I experienced some sexual dysfunction. I had difficulty getting it up and keeping it up, and it took a lot of work to have an orgasm (the female equivalent seems to be exactly the same). Eventually I managed to work around this to where it wasn’t a major problem. Then, like I said, I hit that peak period for about two weeks when I was close to being completely off the Paxil. And now, going through this period where I feel like my emotions are beginning to normalize themselves (e.g., none of the weepiness that I experienced earlier in the withdrawal), my sexual function has disappeared again. Oh joy oh bliss.

I seem to be having the same sexual side effects (the dysfunction) that I had when I first took the Paxil, but what I’m experiencing now seems to be even worse. I’m not in an intimate relationship with anyone now, so it’s not a major problem, but still, it does kind of worry me.

So I’m wondering if anyone has experienced this while going through withdrawal (or post-withdrawal), and if you have, do things get better, or will I have to take Viagra for the rest of my life?

This is one thing I could definitely do without.

First response:

Speaking from a female perspective, the sexual thing did not get better with time for me. I’ve tried everything — it ain’t working. It’s as though the part of my brain that is involved in this process was damaged… and I think that’s just what happened.

Second response:

I have been off Paxil for about two months now and I feel very good, just an occasional brain creep here and there. The sex stuff I was embarrassed to talk about at first and I normally don’t post about it. Someone who visits paxilprogress.org once said that when his libido came back, it came back with a vengeance, and that is what happened to me. As I was reducing, it would come back like that for a week and then subside. When I was off completely it was bad for a couple of weeks. I could not even think straight half the time. Then it subsided way back. But now I am normal again, just right. So I think maybe you will be normal again it just may take you a little longer.

Postscript – February 7th, 2001: There were peaks and valleys (I preferred the peaks), but my sexual vitality eventually returned to normal. It took about a month or so. Right now I wouldn’t say I’m flying off the charts, but for a 30-year-old male, I’m probably right where I should be. (Sure enjoyed those peaks though.)