Paxil Free

Wednesday, November 1st, 2000. A journal entry:

Today was my first full day of not taking any Paxil. I’m still walking around feeling dulled, but at least I’m walking.

It’s going to be wonderful starting from zero again. Unable to think most of the time, I have no plans, only a faint feeling that perhaps I’ll be leaving, moving on, travelling to some place I’ve never been. Does that sound hopeful?

Postscript – February 26th, 2001: This was my first “official” day off Paxil, but because the withdrawal got worse and not better as the weeks went on, I occasionally took an extremely small dose of Paxil purely out of desperation. My last actual dose probably took place somewhere between the 15th and the 20th of November.

Friday, November 3rd, 2000 (3rd day off Paxil). A journal entry:

The withdrawal is getting worse. Feeling emotional and a little suicidal today. Unable to make full use of my cognitive abilities — that’s the reason, I guess. To have that taken away from me makes me feel useless. Meaningless. How long can someone live like this?

Right now I don’t know if I’ll be alive by Xmas.

Preface (Sept. 2006): For awhile after my initial withdrawal experience, I thought I might actually have a chance of getting on with my life if I pushed hard enough. I was wrong, though I didn’t know it at the time. Psychologically, I was in fragile condition. Then one day an incident occured that pushed me over the edge. I’ve decided to remove all the details of it because I don’t want the person involved in the incident to think they drove me to near-suicide. If the following post doesn’t make a lot of sense, that’s why; it’s heavily edited. I was also in a very messed-up state of mind at the time, and it shows.

Sunday, November 5th, 2000 (5th day off Paxil). A journal entry:

…the effects of the cold turkey Paxil withdrawal were totally unexpected and disturbing. Debilitating and nearly constant electrical surges in my brain; they wiped me out. Unable to take any more of it (I gave it a week, a week where every day it got progressively worse), I started taking the pills again. The symptoms went away, but, in a sense, something else went away. And I haven’t been myself since.

A couple weeks after my cold turkey withdrawal, I was driving alone down a long stretch of highway and I pulled over to the side. I reached down into a bag on the floor of the passenger side, looked over my shoulder to make sure I wasn’t about to be ploughed into the ditch by an 18-wheeler, pulled out my notebook and scribbled down a thought that had just occured to me.

The car was still running. I don’t know how long it took me write down the words, probably no more than five minutes. I looked at what I’d written to make sure my handwriting was at least semi-legible. It was. I then got the car going down the shoulder of the highway as fast as I could without crashing, turned onto the highway and away I went…
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Sunday, November 12th, 2000 (12th day off Paxil). A journal entry:

This past year of my life hasn’t been measured in months or days. Not even the beating of my heart, as Kazantzakis might contend. Misery and numbness is more like it.

I don’t think it’s right that a human being should be allowed to live through as much as I have. I should be dead.

The whole lobby was empty. It smelled like fifty million dead cigars. It really did. I wasn’t sleepy or anything, but I was feeling sort of lousy. Depressed and all. I almost wished I was dead.

That’s one way to measure my life from this past year, in dead cigars and cigarettes. That’s exactly the description I’d give my life: fifty million dead cigarettes. Excuse me if I’m feeling a little lousy.

Tuesday, November 14th, 2000 (14th day off Paxil). A journal entry:

Emotions become ultra-sensitive at this point in the Paxil withdrawal. There’s no dignity in any of this. Not that I mind having emotions. But there’s nothing graceful about how they’re coming to me.

Tuesday, November 14th, 2000 (continued). A journal entry:

I began reading J.D. Salinger’s “For Esmé — with Love and Squalor,” from Nine Stories, a night or two ago. If I had to pick between this story and The Catcher in the Rye to keep, I don’t know which one I’d pick.

I’ve been having electrical sensations in my head for at least the past ten days. (Since I lost Internet access and stopped posting to paxilprogress.org a few weeks ago, I haven’t been keeping detailed records.) I find them as disturbing now as I did when I first experienced them in July.

For the past 69 days since I began the weaning process, I’ve been doing everything I could to keep an active mind. I’ve been reading and writing as much as possible. I don’t know about the writing, but the reading has been intellectual stuff — Aristotle’s Ethics, that kind of thing.

But for the past ten days or so I haven’t been able to stick to anything. I’ve barely touched the Aristotle book. I open to where I left off and before I even finish the first paragraph I’m saying, “I can’t read this.” The electrical shocks that take off from behind my eyes (often while I’m reading) and then surge through the inside of my head have left a mark on me. They’re wiping me out.

Tuesday, November 21st, 2000 (21st day of Paxil). An email to a friend:

Today is my 76th day of weaning myself off the little pink pill I first took around this time last year. I (along with thousands of other people) wasn’t informed as to the severe withdrawal effects of this drug. I don’t care to go into the details of what this experience has been like, but it’s not entirely dissimilar to benzodiazepine withdrawal, only that it takes longer. I’ve been completely off the drug for almost two weeks now, but the neurological side effects haven’t completely dissipated. I expect that within the next few weeks the worst will be over with, and then I might be able to get back to living. Ask anyone who has lived through this: it takes away your life.

To maintain my sanity, I’ve tried to read and write as much as I can throughout all this, and until about a few weeks ago, I was doing okay (got about half way through Aristotle’s Ethics and enjoyed just about every page of it). The experiences of these past 12 months (one crisis after another it seems) have tested my faith and challenged me personally to such a depth that it’s going to be a while before I’m able to catch up with all of it. I’ve been writing about it as much as I can. But like Paul Simon says, “Sometimes even music cannot substitute for tears.” It has been a challenge, to say the least. I can’t believe I’m still here (that is, I can’t explain it).

I don’t know what I’m going to do once I’ve gotten through the withdrawal (it’s impossible to make plans while this is still going on; I can barely function), but I feel a strong desire to be anonymous for a while.

Sunday, November 24th, 2000 (24th day of Paxil).

Sarah wrote:

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

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

Through reports and research that I have done on Paxil, this seems to be a common factor. They don’t know why or how. But I will tell you, and you probably already know, Glaxo SmithKline has yet to accept any responsibility. Through reading and studying about Paxil, there seems to be many changes in personality that do take place. Read Medscape on the internet for any update information. It is a very informative database.
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Saturday, November 25th, 2000 (25th day off Paxil).

Someone said, “It is the pressure in my head and behind my eyes that gets me down. I feel as if I must force myself to focus.”

I should have had those words stamped to my forehead for the past 80 days since I’ve been weaning off the Paxil.

Because I’ve taken multivitamins up the gazoo, I haven’t experienced the Paxil Flu. But right now I seem to have the body aches, and I’m in a mood. I don’t know what kind of mood, but it’s a mood alright.

Anyway, that’s just me. Trying to walk it off. No major brain zaps anymore, but the pressure behind the eyes is still there. That’s the one constant throughout all of this.

This is a serious impairment on my brain function.

There is not a curse loud and long enough to express my anger and frustration.

P.S. (Sept. 2006): The pressure behind the eyes mentioned in this post is part of the brain zaps or electrical surges that, for me, began in my eyes and then went through my head and the rest of my body. There was always that weird pressure inside my eyes that made it feel like a brain zap was about to hit me any second. I’m sure the hypersensitivity to light was connected this insane electrical pressure in my eyes. (I just added Vision / Eye Problems as a category, though for the most part eye problems will be convered by the categories for the electrical surges and hypersensitivity to light and sound.)

Monday, November 27th, 2000 (27th day off Paxil).

I just got back from my seeing my doctor. Today is my 82nd day of weaning off the Paxil. I don’t know how long I’ve been down to zero; two or three weeks, I suppose. I’ve been seeing this psychiatrist because I needed someone who supposedly knew what they were doing to supervise my weaning off of the Paxil. So far he’s done a good enough job. But as far as therapy is concerned, my sessions with him have never been a catharsis of healing. Occasionally, though, I manage to have a conversation with him, like I did today, that does provides some insight, or maybe it’s hope. In the midst of all this, hope can go a long way. So anyhoo…

I mentioned to him today how my libido went through the roof a few weeks ago and stayed that way for about two weeks, but how that peak period of vitality has since come and gone. This was around the period in the weaning when I was almost off the Paxil completely. It might have kicked in during the last few days I was on 5mg. That peak period lasted about two weeks after that and now it’s gone.
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Tuesday, November 28th, 2000 (28th day off Paxil). In response to a message on paxilprogress.org:

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.)
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Tuesday, November 28th, 2000 (continued).

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.
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Friday, December 1st, 2000 (31st day off Paxil). Responding to a comment on paxilprogress.org:

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.

Friday, December 1st, 2000 (continued).

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.

Friday, December 1st, 2000 (continued).

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.

Friday, December 1st, 2000 (continued).

Anne also said, “When I reach out to what are called my friends, it seems that everyone vanishes when I need them the most.”

Any person living through withdrawal knows that nobody has to say anything; there are no right or wrong words. Hearing a friendly voice makes all the difference, a voice that is listening. That’s all it takes. A few people I thought I could count for that simply disappeared in the midst of all this. It’s like I don’t exist to them anymore. It’s amazing. It seems that some of these so-called friends of mine can only handle reality on a superficial level. They’re my friends, but only when it’s easy.

This is the one revelation I’ve been reluctant to accept. I look at the people I used to hang out with, and honest to god, most of them are living in Disneyland; real nice people, but only when the sun is shining and the weather is calm. When I’m happy, they’re happy. When I’m not happy, they take off; they disappear without a word, wrapped up in what Albert Camus once referred to as “the childish chasing after forgetfulness.” And they probably think I’m the one whose nuts.

Even if I survive this experience relatively intact, there are some things that will never be the same for me. There’s no way.

And although I’m not smiling at the moment, I mean this in a positive way.

P.S. (Sept. 2006): I may have been a bit too critical of my friendships at the time.

Friday, December 1st, 2000 (continued). Responding to a post on paxilprogress.org:

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.
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Wednesday, December 6th, 2000 (36th day off Paxil). Responding to some messages on paxilprogress.org:

I have good days and bad days and some days where I don’t feel like talking to anyone. Since early July my life has been affected by this Paxil withdrawal, and it still is being affected, and most of the time nowadays I’m just sick of it. I’m tired and I want my life back.

I go for days at times not responding to emails or posting any messages. I haven’t disappeared though. Thanks for asking. I don’t want to talk about it — but thanks for asking.

If I let myself think too much about everything I have lost because of the Paxil withdrawal (my work, close relationships, so-called friends who turned out not to be friends, not being able to function like a normal human being, etc.) — I’d probably get really depressed. The level of anger and frustration and hurt is off the scale. And, still living through the withdrawal stages, I’m not in the mental condition to do anything about it — to do any thing.

I get tired of it sometimes, and I find myself sort of tuning out, because it’s all I can do to give myself a break. And it’s time like this that I’m really tempted to get high, smoke dope, find some escape.

I don’t go around sharing every single one of these bad days because I don’t want to bring everyone down. But I’m still around.

Wednesday, December 6th, 2000 (continued).

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.
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Wednesday, December 6th, 2000 (continued). Responding to a message on paxilprogress.org:

If you’re down to 5mg and feeling really good, you may be experiencing the mysterious “Paxil window” where one’s vitality and overall sense of well-being feels about as good as it gets. It seems that for some people the window never closer; they get off the Paxil completely and things only get better. But for others it really is a window and it eventually closes.

That’s what happened to me. When I was at the dose you’ve got yourself down to (around 5mg), I was feeling really good. Specifically, I experienced a sexual rejuvenation that made me feel like I was in my teens again. No complaints there. But eventually the window closed (it was open for about two weeks) and I became completely impotent. I got worried about that, but luckily it didn’t last too long. It’s been about two weeks since things became… limp? (Whatever adjective suits you.) But within the past three or four days things have returned to normal. I don’t think they’ll ever reach the peak I experienced during my “Paxil window,” but I can at least step up to the plate again. While I was at the stage you are right now, though, I was hitting a home-run every single time. Nice.
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Friday, December 8th, 2000 (38th day off Paxil).

From Joe:

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

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

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

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

Friday, December 15th, 2000 (45th day off Paxil).

Dave wrote:

My emotions are all over the place. I keep bursting into tears very suddenly and out of the blue. Also, in the evenings/nights the last few days I have had really frightening feelings that I’m going to suddenly do something really awful and will just lose control. I feel like something inside me that usually inhibits these actions has come undone and is in danger of activating. It’s really scary.

Has anyone else felt this? It’s not a feeling of wanting it all to end — it’s a feeling that it just suddenly will with some rash action. This is very hard to write — probably to read to. Please reply if you’ve felt the same. I just want to hear there are others going through the same thing — please don’t write and tell how SSRIs are thought to induce suicide — I can’t handle that.

My response:

I know the feeling. You don’t have to describe it to me, and I don’t feel like elaborating on it. I know it too well to want to think about it too much. Since my first attempt at cold turkey withdrawal, I have experienced what you’re describing more than once (the last time I experienced it was about five days ago). I’ve experienced it at various times during my withdrawal and in many variations, but it’s all basically the same thing. It’s extremely difficult and scary to describe, but it’s like a knowledge that I could die now; a human being can only take so much, then something’s gotta give. But that doesn’t even come close to it.

Anyhow, I have lived through it, and continue to do so, because I’m able to avoid things that could set me off.

How I’ve managed to live through these moments, I don’t know. Recently, I even wrote a suicide note. Then I spent an hour or so polishing it up. And so I wrote a note instead of jumping off a bridge. By the time I finished polishing up the note, I’d managed to live through it, and although I wasn’t feeling too hot, I was no longer in danger. It’s the scariest thing I’ve ever had to face. And maybe I survived it by not facing it, by doing something else. Or maybe by actually facing it through writing and saying, “You won’t get me, you motherf**ker!” I don’t really know, and I’m not sure I can talk about it because it’s still very fresh in my mind.

But I’ve survived it and done most of it alone. There are times when I don’t want to talk to anyone, and don’t. I know when I have to be careful. That’s probably what got me through it, a knowledge that, “I have to be careful now.” And I run from everything — probably not the best thing to do (social isolation is usually not a good thing), but when even the slightest thing can set me off, can push my buttons in the wrong way, I make sure not to bump into anything or anyone who could push me more over the line.

Don’t push yourself. Know that now may be a time to be careful. Very careful.

None of this is probably any comfort to you, but what I can I tell you? I’ve been feeling extremely worn down lately and I don’t have as much to give as I used to. But I’m still alive.

Fall head-first into the agony of it. Live through it. Whatever it takes. Maybe that’s what I did. Maybe you can do it too. The main thing is don’t kill yourself. It isn’t you, remember; it’s the damn Paxil withdrawal.

Saturday, December 16th, 2000 (46th day off Paxil).

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.

Tuesday, December 19th, 2000 (49th day off Paxil).

Scott said:

“I was driving into work through the most beautiful countryside this morning and remembering something someone said about how the colours are so much more vibrant when you are off the Paxil, and I was thinking about the fact that nothing has really touched me since I went on the Paxil, and that I don’t feel like I’ve really experienced things deeply — colours or smells or joy or excitement.”

This is something I can relate to. It’s something I’ve noticed even more since I began weaning myself off the Paxil, which completely messed with my normal capacity to appreciate the world around me. Over the years I’ve developed an appreciation and a connection to simple things, uncomplicated things. Things which are diminished by words: sunshine, gut-driven laughter, a compassionate touch, a genuine smile, a cool breeze that can lift you out of the weight of your days, poetry. All that good stuff.

I can remember the last time I had a moment like this. It was somewhere between the hell of my cold turkey withdrawal and the beginning of my weaning off the Paxil. I was on shaky ground, but I remember taking a walk behind our house in the woods with my father’s dog. I was walking past a crab apple tree in our backyard just at the edge of the woods when I heard a thump. It didn’t make me jump ten feet in the air like it would later on in the withdrawal.

I turned slowly and looked around, trying to figure out what had made the sound. I was standing there looking at this crab apple tree, a crab apple tree that was weighed down with these huge red and yellow apples. Then I knew it: One of those big apples had fallen out of the tree and thumped against the ground. That was the sound. And just as I was thinking that, another apple fell free, and I smiled.

It was one of those moments that wouldn’t have happened had I been three footsteps further down the path when the first apple fell. The whole thing probably took less than a minute to be over and done with, but I can still remember the joy of being able to appreciate that moment, the calm and the quiet of it all. Reading this you may not have any idea what I’m talking about it. But it was a moment of deep of appreciation, of being glad to be alive.

That sort of appreciation requires a certain kind of willingness, a certain kind of calm that allows a moment like that to happen in the first place. And since I’ve been living in Paxil Hell, I haven’t lived a single second like that. Believe me, I have wanted to die.

But there is a happy ending to this (I think). But I’ll tell you about that in a day or two. I’m not ready yet.

Friday, December 22nd, 2000 (52nd day off Paxil).

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.
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Monday, January 1st, 2001 (62nd day off Paxil). A journal entry:

Occasionally everything falls into place. Even a broken clock tells the correct time twice a day. Whoever was the first to say that has earned my admiration. The poem falls into the right hands at the right moment, and it works perfectly.

I just read a poem by a friend of mine who is a well-known writer. On another day this poem would have meant nothing to me. I wouldn’t have felt it — that is, it wouldn’t have been as real to me as it is right now.

It’s a poem about him and his son walking through a graveyard where some famous writers are buried. His son has “passed beyond boredom into resignation” and would rather be doing anything else. The groundskeeper, who acts as their informal guide and happens to be French and doesn’t speak a word of English — he “would as soon being doing this as something else.” The son in the poem speaks fluent French and acts as the translator. Listening to his son and the guard speaking, recognizing a word here and there but unable to grasp anything that’s being said, “It’s as if he and the guard are old friends now, and I’m there to be humoured.”

Like I said. Perfect. Perfect because I know the feeling.

Or maybe you had to be there.

Tuesday, January 2nd, 2001 (63rd day off Paxil). A message about my Paxil progress:

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.)

Saturday, January 6th, 2001 (67th day off Paxil).

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?
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Thursday, January 11th, 2001 (72nd day off Paxil).

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.
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Thursday, January 11th, 2001 (continued).

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.

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Sunday, January 21st, 2001 (82nd day off Paxil). Email to a friend:

I’m beginning to think of my future now. I still have a hypersensitivity to light and sound — the slightest unanticipated sound, like the house creaking or even the sound of someone clipping their nails, makes me jump about 20 feet in the air — and in the run of my day, this is what takes up most of my energy. But I’m not waiting around for it to get better. Whatever kind of work I eventually find will have to be tolerable to these remaining withdrawal symptoms. I get bad headaches and my bones ache when I walk around too much, but I’m basically at the point now where I’m ready to move on. I am far from 100%, but as long as I take it slow and carefully, I think have a chance of eventually making a full recovery.

Monday, January 22nd, 2001 (83rd day off Paxil).

During my withdrawal, I had peaks and valleys of cognitive ability. Except for one brief period, writing anything was a challenge. Around the middle of November, a few weeks before I got down to zero milligrams (my last “official” dose was on November 1st, but I had to take an occasional sliver of Paxil for a couple weeks afterwards), I lost my ability to read and retain more than one paragraph at a time. Nothing seemed to hold my interest, and nothing I read seemed to stay with me. My memory was going right down the toilet. I couldn’t retain or recall anything. It sucked. Conversationally, I’m normally more animated than most people I know, but between November and December, I became the shy guy in the corner who kept to himself (I’m still somewhat affected by this).

Only recently, within the past few weeks, have I been able to read on a fairly consistent basis again and to remember what I was reading. It’s like I’m being re-introduced to the world of thought again. Conversationally, I’m not nearly as lively as I used to be, mainly because the withdrawal threw me so far out of the loop that it had a negative effect on my self-confidence. I’ve had plenty of experiences related to my Paxil withdrawal that have beaten down hard on my faith in humanity, but I expect that that, too, will gradually recover. And my self-confidence will probably recover along with it.

It takes time to return to normal after an experience like this. I try not to let it bother me, but often it does bother me that I’m not as lively as I’m used to being and as people are used to seeing me. But I’ve survived a severe neurological trauma (i.e., the Paxil withdrawal, which stole away almost seven months of my life). After surviving something like this, it’s only natural that our legs are going to feel a little wobbly at first. It takes time to get one’s strength back.

WARNING: This post contains profanity.
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