Paxil Free

March 10th, 2001.

One more thing before we move on to the journal aspect of this blog…

Having nearly lost my life to Paxil withdrawal and then survived to tell the tale, and having been in communication with others who went through the same thing, I may be qualified to pass along some things I’ve learned from the experience.

The following are some basic facts of paroxetine withdrawal, things you might expect to come face-to-face with while withdrawing from Paxil — keeping in mind, though, that everyone is different and that there are infinite variations to this experience.

#1: Electric Shock Sensations (aka “the zaps”): The pattern of these sensations are remarkably similar to certain kinds of epileptic seizures except that one doesn’t lose consciousness when they occur. (Personally, I would have preferred to have been unconscious.) They are experienced as a strong electric shock sensation behind the eyes which can easily spread to one’s head, face, spine and limbs. The initial surge — which is overwhelming and impossible to ignore — is often followed by a series of lesser surges which gradually dissipate in waves. These seizures are the most physically debilitating and emotionally disturbing of all the paroxetine withdrawal effects — especially if your doctor never warned you about it.
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March 15th, 2001. (Basic Facts - continued)

If Paxil saved your life, that’s wonderful. But please spare me the hate mail telling me what a jerk I am for giving Paxil such a bad rap. I have no desire to extinguish anyone’s neurochemical happiness. But I do not and will not hide the fact that I am angry about the injustice that I and thousands of others have experienced because of the fraudulent and unethical practices of GlaxoSmithKline — the practices that have left the medical community mis-informed and uninformed as to the full and potential effects of paroxetine withdrawal.

In order to make their $2,000,000,000-plus every year off this drug, GlaxoSmithKline, by not being upfront about the potential effects of paroxetine, lied to the FDA to get approval for Paxil and then continued to perpetuate that lie by hiding the information they had about the full effects of Paxil withdrawal from the medical community.

(Oct. 2006: Here it is five years later, and the wonderful people at GlaxoSmithKline are still up to no good. They are making so much money off Paxil, they can afford to pay hundreds of millions of dollars in fines and still make a profiit. An informative article in The Scoop reads: “A limited review of the company’s involvement in the legal system over just the last five years reveals a clear pattern of habitual corruption. However, although Glaxo has paid billions of dollars in accumulated fines, penalties and awards to plaintiffs in civil cases, not one company official has been arrested and charged with a crime.” The power of a corporation like GSK is incredible. Making billions of dollars every year off Paxil allows them to get away with murder. They can afford it.)

When I first took Paxil, it did help. But when the time came to stop taking it, I suffered through the worst hell of my life — and all of it could have been prevented had GlaxoSmithKline told the truth from the start.
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March 19th, 2001. (Basic Facts - continued)

This is the scariest one of them all, and I probably should have put it #1 on my list ahead of the electric shock sensations, but it’s the most difficult one to talk about and I still don’t know what to say about it — except that it was real, very real. I’ve heard many people going through withdrawal talk about this. The reason it’s scary is because it’s not just a feeling; it’s an overwhelming urge, an almost primal drive, a suicidal compulsion that kicks in when the experiences of the withdrawal become too much. There is no way to describe how real this aspect of the withdrawal experience can be. It’s not the kind of thing that is casually discussed because of the fear that everyone is going to think you’re crazy and beyond help, and nobody going through this wants to feel that alienated; the experience is lonely enough without adding that to the list.

The reality of Paxil withdrawal, though, is that it can wear a person down, testing one’s ability to stay civilized on the outside while inwardly the experience is pushing them to the edge of their sanity, of their ability to cope. This I think is the greatest challenge of the withdrawal experience. All of these issues are addressed in the further postings on this blog, but the most I can say for now is to remember that it’s not you — it’s the Paxil withdrawal. It may feel like a living hell that, if you survive it, will have damaged you so badly that’ll never be the person you were before. But it’s not as bad as it feels. I know it because I’ve lived through it. I had the seizures so bad I was convinced that permanent neurological damage was being done to me, and I didn’t want to live to see what the hell was left of me when it was all over with. So on more than one occasion I felt a compulsion to want to get it over with now (and sometimes it wasn’t just an urge but seemed to be a perfectly logical course of action; that’s what’s scary about it).

But just remember it’s the Paxil withdrawal, not you, and that it will pass. I saw a quote from Winston Churchill the other day which I would love to have heard during the worst moments of my withdrawal: “If you find yourself going through hell, keep going.”

(See also Thoughts of Suicide.)

P.S. (Sept. 2006): I realize this could be read as one hell of a depressing blog. No doubt about it. But if you’re already going through withdrawal, reading a blog like this isn’t going to make it any worse. I’m only on the second day of re-posting all this stuff, and I’m already receiving emails from people saying they appreciate it. I don’t like revisiting all these bad memories; I want to get this stuff re-posted as fast as I can — because it’s a bit of a downer, to be honest. But it does seem to bring comfort and reassurance to people who are going through withdrawal or have had recent experience with it. So that’s it — that’s the reason I’m doing this. Beyond that specific demographic, though, I would say, “Move on. Nothing to see here, folks.” Really.

March 27th, 2001. (Basic Facts - continued)

The nausea, along with unpleasant digestive problems (those are fun), is usually accompanied by the seizures that are #1 on this list. Most of the time it seems to happen when someone has tried going off Paxil cold turkey. By weaning slowly, though, one’s appetite might get all out of whack, but the nausea apart from the seizures and dizziness usually isn’t a huge problem.

The fatigue, though, is a problem. Paroxetine withdrawal is an exhausting experience. Every single second of it is exhausting — especially while the seizures are happening. It’s been nine months since my Paxil withdrawal experience began, almost four months since I last took any Paxil, and my energy level, physically, emotionally and cognitively, is still far from being 100%. Things are slowly getting better, but what can I tell you? This experience stole away a huge chunk of my life and robbed me of my health of which I am still trying to recover. So sue me if the bounce in my step isn’t as bouncy as it used to be. I’m feeling a little worn, a little bit tired, and maybe it shows. But I am alive, and that’s an accomplishment. Believe me, it is.

And so that’s about it in terms of the basic facts of Paxil withdrawal. It may not look like a pretty picture — that’s because it isn’t. But remember to keep in mind that most of what I’ve listed here is the worst of it all. Everyone is different and the chances of you experiencing everything on this list are slim. If you take care of yourself with daily exercise, avoid stressful situations, take some vitamin supplements and wean slowly at your own pace, you might not experience any of these things. Imagine that. That’d be great.

For some people, the transition from Paxil to being Paxil free is a relatively smooth ride. I happen to have been a bit sensitive to all the crap my withdrawal experience laid on me, but the #1 rule to remember is that everyone is different. Everyone can survive the withdrawal, but at their own pace and in their own way.

P.S. (Sept. 2006): These are the Paxil withdrawal effects I’ve had some experience with. But everyone is different, so I’d guess there’s at least another dozen or so withdrawal effects that aren’t on this list. Here are some of them:

(I’ve also posted a Paxil withdrawal guide from the original Paxil Free website. It’s the actual page from the old site, untouched since it I first posted it.)

April 7th, 2001.

I was prescribed Paxil (20mg/daily) for depression and post-traumatic stress in November of 1999. At the same time I began to see a therapist who helped me deal with the symptoms of the post-traumatic stress (which included flashbacks; no fun there, let me tell ya). More than Paxil, more than anything or anyone else, the benefits of this communicative therapy (a.k.a. talking) were immeasurable.

However, the Paxil did provide a certain calm which allowed me to deal more effectively with the emotional trauma of the experience I had gone through. (For my own privacy, I’ve chosen to withhold the exact details of that experience.) It seems to me that Paxil regulates one’s emotions so that they are more manageable. How exactly it does this nobody really knows, but there are a few theories out there which I think have some validity to them.
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This post is the beginning of the journal portion of this blog — the almost-daily record of my Paxil withdrawal experience from July 2000 to January 2001. I haven’t decided how much of it I’m going to revise or delete. I’ll just work my way through it and see how it goes.

Current readers of this blog are welcomed to comment as much as they like. However, I don’t have the time to moderate comments, so they’ll be sent to my email account where I may eventually incorporate them into the blog anonymously. I’m still not comfortable giving advice, so I doubt very much I’ll respond to any comments. (I’d go to paxilprogress.org if you have any questions about Paxil withdrawal.)

Postscipts and comments were added to the original Paxil Free website. New postscripts and comments will be dated and will appear in italics.

Thursday, July 6th, 2000.

I stopped taking Paxil about five days ago. I went through a major trauma last year, and taking the Paxil during that crisis did make a difference. It helped. But I didn’t want to be on it forever, so when I asked my doctor about a month ago he said, “The good thing about Paxil is you can stop taking it cold turkey; you don’t have to be weaned off it.” He told me this with confidence — and he’s been a good doctor for me and I trusted him. I found it hard to believe, but I trusted him. He’s a good guy. But like most doctors… well, they speak with authority even when they don’t really know any better than you.

Someone at paxilprogress.org wrote: “When my doctor told me to take such drastic steps to reduce [i.e., cold turkey], I was suspicious but figured he knew better than me — I’ll never make that mistake again.” And neither will I.

My advice to everyone is go with your gut feeling — trust yourself first. My feeling was that I should be weaned off the Paxil — and I don’t care what anyone says, that is exactly what you have to do. Cold turkey my ass. I know that what I’m going through right now cannot be good.
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Friday, July 7th, 2000 (continued).

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

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

About six days ago, I stopped taking the Paxil. And for the past three days I’ve been barely functional. For the past 72 hours I’ve experienced these wonderfully debilitating electrical surges in my brain every time I move my eyes. (Try going through a day without moving your eyes.) I feel like I’m losing my mind.
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Friday, July 7th, 2000 (continued). This is a response to someone’s question about weaning (I don’t have their original message):

From what I know (and I’ve learned an amazing amount in the past 24 hours), dropping from 40mg to 20mg is too fast. Just today I had to go back on it after six days of hell after going cold turkey (doctor’s orders, the cold turkey that is). Once I get back to myself again (already the brain zaps are gone), I plan to ease myself off as slowly as I can — I don’t care how long it takes as long as I can get off it. No matter how you do it, though, everyone says to go slow; you cannot rush it.

Friday, July 7th, 2000 (continued). This is a repost of someone else’s posting, but I think it’s a good one:

For all of you new people who are just stopping cold turkey, please listen up. Paxil needs to be withdrawn from very slowly. You can not just stop, or stop at 10mg. You need to wean off of it. (Most doctors do not know this). If you go too fast, you will experience severe headaches, nausea, dizziness, electrical zaps, etc., in your brain. I’m telling you this because I’ve been seeing a lot of newcomers trying to get off Paxil quickly and experiencing bad side effects. This is your brain you’re dealing with. Please take it slow. For anyone interested, this is how I did it. 20mg one day, 15mg the next, alternating for three weeks. Then 15mg one day, and 10mg the next, alternating for another three weeks. Then 10mg one day and 5mg the next day, alternating for another three weeks. Then you can go down to 5mg for three weeks. I realize that everyone is different. But this is a sensible way to withdraw. It might take you longer, but it shouldn’t take less time. Give yourself a good three months at least. If you experience any dizziness, you can take Xanax, Dramamine or bonine (or consult your doctor). I just hate to hear about someone stopping cold turkey. Please take good care of yourselves and wean, wean, wean.

Saturday, July 8th, 2000.

I began taking Paxil last year after experiencing a series of traumatic events which left my spirit drained, less humorous, less alive, less caring about living, etc. I wasn’t severely depressed, but it was beginning to interfere with my responsibilities at work, my social relationships, my personal relationships, everything. I eventually took the Paxil at 20mg/day, and it did help.

Meanwhile back on the farm…

I got on the paxilprogress.org forum a few days ago because I was experiencing “brain zaps” after my third day off Paxil cold turkey (doctor’s orders), and I knew I had to do something. For anyone who doesn’t know what “brain zaps” are: It feels like a mild (if there’s such a thing) electric current going through the front of your head, except it’s inside your head. It occurs in fairly regular intervals (for me it was about once every 10 or 20 seconds) — and it kicked in whenever I tried to go sleep on the third day of going cold turkey. It’s not really a “zap” though, more like a surge of electricity, like a thunder storm building up over the horizon, except it’s inside your head and it surges up from zero to overload in about 2 seconds and wipes you out.
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Friday, July 14th, 2000.

There is no way I will be silent about what’s happened to me. But right now I’m back on the Paxil only because the brain zaps were killing me. Today is my 7th day back on Paxil (previous to that I was experiencing withdrawal syndrome), and only in the past day or two have I been feeling like myself again.

My plan is to wean myself off the Paxil eventually. If you’ve only been off four days cold turkey, it’s going to worse before it gets better. Some people bear it out; I couldn’t, and you may want to go back on it too — knowing that you can wean yourself off it. And weaning is definitely less traumatic than cold turkey.

Saturday, September 9th, 2000.

Today is my 4th day of weaning myself off Paxil, but this time I’m doing it slowly. The first time I stopped was cold turkey because my doctor said it was okay to do that. That was a few months ago, and I haven’t been the same since.

It took me this long to get my courage back up to give it another try. Outwardly, I appear pleasant and calm, but inside I’m scared and have been at least for the past month anticipating getting off the Paxil again. As well informed as I’ve become since the hell of my initial withdrawal experience, I’m still scared. Everything I went through during my withdrawal has definitely left an impression on me, and one that I’d much rather have done without.
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Wednesday, September 20th, 2000.

Colin said:

I can’t believe I’m going to do this. After almost a month, I caved in and called my doctor. I get a Paxil refill this afternoon. I’m scared to go back on it but I’m also scared to be off of it. Can anyone help me?

You may have mentioned before how you went off the Paxil, but I lose track of who says what around here, so forgive me if you’ve outlined how you went about it. If I were to take a guess, though, I’d say you got off the Paxil cold turkey — and if not cold turkey then way too fast. That’s my best guess.

I went cold turkey a few months ago, lasted 6 days and on the 7th day had go back on the Paxil. I felt suicidal a few weeks later. Losing control like that — and not having control like that — just doesn’t jive well with me. I’m much better now, but it was definitely one experience I could have done without.
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Thursday, September 21st, 2000.

Carol said:

I am just so upset because I was put on this for depression and the depression is worse getting off this stuff. I just want my life back.

I want my life back too. I’m in the middle of weaning, and although it’s going relatively smooth, I can still feel the Paxil in me. I don’t think I’m going to feel like myself again until it’s completely out of my system.

As far as feeling depressed again, I got really depressed after my cold turkey withdrawal — and this is after having gone back on the Paxil. I just couldn’t handle not having control over my life again. This is a general feeling I’ve been dealing with since my bout with post-traumatic stress last year. Since then I’ve gone through a series of experiences where I couldn’t do anything about what was happening to me, and then just when things started to look settled again, I followed my doctor’s orders in July and went off the Paxil cold turkey, and wham-o, down I go again. I’m weaning myself slowly off the Paxil now; I’m more or less standing on my own again, but my legs still feel pretty wobbly.
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Thursday, September 21st, 2000 (continued). Responding to a concern someone had about a weird lump in their throat:

From my own experience of cold turkey withdrawal from Paxil (which lasted six days before I had to go back on it), from what I’ve read at paxilprogress.org and from what I’ve been able to read in the medical literature, Paxil — and withdrawing from it — plays havoc with your immune system.

Almost everyone (especially those who go cold turkey) seems to come down with flu symptoms while they’re trying to get off Paxil — but that’s just the tip of the iceberg.

When I tried getting off Paxil, besides coming down with the worst flu of my life, the brain zaps and blurred vision, I also had cancerous-like growths show up inside my mouth, particularly under my tongue. Eventually these painfully large growths seemed to fill with blood and begin to bleed whenever I ate something that rubbed against them. I had one particular tumour that didn’t go away for a month, then disappeared for a week and then came back. Several times I thought of going to the doctor because I was sure I had some kind of cancer, but some days the tumour was there and some days it wasn’t. Eventually it went away.

That’s just my little story.

If you don’t take vitamin supplements already (e.g., B-Complex, at least 50mg a day), then start now. Extra doses of Vitamin C and Calcium/Magnesium wouldn’t hurt either.

But my feeling is that you don’t have anything wrong with your throat. Once the Paxil and everything else is flushed out of your system, that lump in your throat will go away. By now you probably think you have throat cancer (and I know how convincing the experience can be), but I think when everything is over done with, you’ll be fine.

Tuesday, September 25th, 2000 (continued). In response to a post at paxilprogress.org:

According to what I’ve been reading, if you took at least 20mg of Paxil for more than 4 months, then it will take you at least two months to wean yourself to zero without experiencing any major withdrawal symptoms.

I know that everyone is different, and I’ve read of people who managed to go from 20mg to zero is less then a month. Whippee for them, but I’m more inclined to think that that’s the exception, not the rule.

The rule is: GO SLOW. Everyone, it seems, who does not wean slowly, usually experiences more severe and prolonged withdrawal symptoms.

I don’t think you’re going crazy. You just may have gone off the Paxil too fast. And you may have to go back to a comfortable dose and then gradually wean yourself off the Paxil — slowly.
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Preface - February 5th, 2001: This is the first post where I included one of the responses to what I’d written. After this I began to keep a better record of all the conversations and exchanges that took place.

Thursday, September 28th, 2000. In response to a post at paxilprogress.org:

Everything I know tells me that alternating 20mg/10mg of Paxil is too much of a drop. The most anyone should alternate or lower a dosage is by 5mg. If you stick to that regiment, it should work. I’m down to 10mg right now, and so far so good.

I told my doctor last week, “You better give me something just incase the brain zaps start creeping up on me, because I am NOT going through that again.” He gave me a prescription for Xanax (aka Alprazolam) which he said is often used to get people through withdrawal from many neurochemical dependencies. No more than twice I day I’ve taken at the most half of a 0.25mg pill (very small amount; sometimes I take a quarter of a pill), and it allows me to walk up and down stairs without experiencing too much dizziness. I am nowhere near 100%, but I’m semi-functional, which I consider an accomplishment.

So by alternating dosages by a maximum of 5mg and taking a little Xanax to “take the edge off,” I’m getting through it. When you try weaning again, the slow route might be the way to go.
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Sunday, October 8th, 2000.

Today’s my 32nd day of weaning. Still levelled off at 10mg.

Two days ago I was feeling like a zombie. But since then, things have been different. The next day, just before I went to bed, I began to feel better. And all day today I’ve been feeling almost normal. (It feels almost abnormal to feel normal again. Weird.)

About an hour ago I began to feel a bit of a headache, and that’s the only possible symptom of withdrawal I’ve experienced today. I haven’t felt dizzy or off balance or any of the usual things. I think the withdrawal is still happening, but it’s amazing how when you’ve experienced the worst of it (i.e., cold turkey withdrawal), the degree of the withdrawal can be measured down to the slightest fraction. Anyone notice that? If cold turkey withdrawal (namely the brain zaps) is a 10 in severity, then what I’ve experienced today is a 1, maybe a 2. It’s what we who have lived through this junk call a Good Day.

In terms of my diet and exercise and the usual things I do to keep the electrical surges at bay, I haven’t done anything different in the past two days. Perhaps it was just my body and brain finally adjusting to the 10mg level.

But I have another theory. It’s more of a curiosity, I suppose. Not much of a theory, but it’s something I’ve noticed a few times since I began the weaning process. Until now I just didn’t think it was plausible. But who knows. This is what happened:
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Wednesday, October 18th, 2000 (continued).

In a previous message I mentioned feeling suicidal at times. I know that’s the kind of thing that scares people off, but most people who go through this kind of thing eventually get around to feeling something like it. The problem with actually admitting it out loud is that people think you’re crazy — and nobody listens to crazy people, right? (Right.)

But the fact that I can say it out loud demonstrates, I hope, that I’m probably more healthy than the people who don’t say it out loud. And the last thing I’m going to do is smile and pretend everything is a.o.k. when it isn’t. I see people every day like that who are living in Disneyland and it’s a way of life for them. (And between you and me and that wall over there, these are the people who are nuts. Seriously.)

Despite all the depressing things I’ve experienced because of the Paxil, I am not depressed. Believe me, I know depression, and this isn’t it. This stuff is a headache, and there’s no joy to be found in any of it, but my personality is still relatively intact, and I’m not depressed.
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Monday, October 30th, 2000. A journal entry:

I’m feeling better today. I was going to say much better, but that’s probably pushing it. I got up at 7:30 this morning to help a friend move some things into a new office. I haven’t been sleeping lately, so I was expecting to be tired, grumpy and out of sorts when I got up, and I was. Never too hungry that early in the morning, I had a slice of toast with honey, my usual handful of vitamin supplements, a bottle of water and off I went — hit the road in the pickup truck (someone else driving).

I immediately got dizzy and off balance lifting things and walking up and down the stairs. I wasn’t long popping my first Xanax (electrical sensations were beginning to stir behind my eyes). It took a couple hours to do the work, then I had soup and a bun from doughnut shop. By the time I got home about an hour or so later, I felt good. Not nearly as lousy as I’ve been feeling for the past few weeks, on-and-off suicidal and all that.

This wanting to live stuff is tricky business.

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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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.

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.)

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). 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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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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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 (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, April 8th, 2001.

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.

May 29th and July 26th, 2001.

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.
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