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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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 on the Paxil-withdrawal forums.

Thursday, September 28th, 2000. In response to a post at a Paxil-withdrawal forum [similar to 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 in case 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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Tuesday, September 25th, 2000.

Well, today it my 20th day of weaning off Paxil. I am now down to 10mg, alternating with 15mg for three days (today happens to be a 10mg day), and for whatever reason, I’m feeling okay. I occasionally have a mild tension around my head, but no headaches, no feeling like the brain zaps are just around the corner, hardly anything.

Easily for the past three days I’ve been walking around holding on to the walls, grabbing onto something every time I stood up, not making any sudden movements (especially with my eyes), avoiding loud noises, being extremely careful walking up and down stairs, and absolutely not driving the car.

Then around 10 o’clock last night as I’m watching the Olympics, I start getting tired, and as I do my head clears up and I don’t have any symptoms for the rest of the night.

Then when I woke up this morning, my head was still clear — but seeing how everything usually kicks in about an hour after I get up, I wasn’t very hopeful.

But, to my surprise, I’ve been okay all day. I was not expecting to feel like this today. I picked up a Xanax prescription from my doctor today to help “take the edge off” if the withdrawal got any worse — and worse is definitely what I was expecting — but so far so good.

Tomorrow may be completely different, but what I’m experiencing now is definitely a surprise. I’m still moving slowly and cautiously, but I almost feel like I don’t really need to.

Go figure. Who’d expect to have a good day when they get down to 10mg? Not me.

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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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.

Tuesday, October 31st, 2000. A journal entry:

I woke up this morning around 4:00am with a clarity of mind that I would describe as unusual. I’d fallen asleep in the living room/rec room while watching a TV show I had on tape. I picked myself up and walked to my bedroom. I didn’t go back to sleep right away though; it wasn’t in me.

I lay there wrapped in the blankets thinking. My body didn’t feel wide awake, but my mind was going on a ride. One thing would lead to another, and then another, and I’d say this went on for at least two or three hours.

There were so many thoughts — some to do with my own philosophy of things, arguing my way through it so I could clearly stand behind what I was saying. The thoughts were so clear and strong and well worked out that I doubt they will fade from my consciousness any time soon. I was able to find some peace in all of it. A peace of mind, and of heart and soul, that is hard to come by in the condition I’m in.

I’m down to about 2.5mg of Paxil a day, with at least 0.5mg of Xanax to take the edge off. I don’t know how I’m going to feel once I’m completely off the stuff.

Today is Tuesday. By this weekend I’m hoping to be off it completely. That won’t mean the end of the withdrawal. But that’ll be it for the pills.

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.

May 16th, 2001.

Thinking the worst was over, I began looking for work on February 16th, 2001, about three months after I got off Paxil. I began to take what I thought were the first steps towards living my life again. I still had a hypersensitivity to light and sound, but it didn’t seem to kick in until much later on in the day, usually somewhere between 7 and 8pm, which was manageable to me and which seemed to indicate the withdrawal effects were gradually working themselves out of my system.

Psychologically, the transition was more difficult than I thought it would be. Just being around people again in a normal social environment took some getting used to. I found myself feeling apprehensive, hesitant and less spontaneous than I was used to being. But after seven months of social isolation, I suppose this was understandable. Socially, I was feeling a little rusty, but I was confident that I’d be all right as soon as I could find a job, get into a routine and develop a normal structure of social relationships again, all that good stuff. I’d been in starting-from-scratch situations before and, although I had my down days, I knew I could get through it if I kept pushing myself.

The social adjustment wasn’t easy. Things were made even more difficult when I began having bad headaches after the first week. I now understand what people mean when they refer to a “pounding headache.” It was as if I could feel my heart pounding — but inside my head; it was a pulsating pain. I took every kind of headache pill to fight off the headaches, but nothing worked. As the headaches continued, the hypersensitivity began to set in earlier during the day until I was eventually hypersensitive all the time, twenty-four hours a day.

It was a sinking realization the day I said to myself, “It’s still not over.” The withdrawal seizures were over and done with, but my life still wasn’t mine. I was determined not to let this experience take away any more of my life, and so I tried to jump back on the horse the first chance I had. But that determination may have gotten the better of me.

I can’t say for certain, but I probably shouldn’t have pushed so hard so soon after my withdrawal. My body, physiologically, neurologically, was still in recovery and in need of healing. I don’t know what the hell I should have done (sitting around on my ass out in the country by myself was driving me crazy), but I probably should have given myself another month to take it easy, to give myself more time to heal instead of throwing myself into a situation that was more stressful than I anticipated. It’s as if I was trying to will my life back, but my body wouldn’t let me. Mind over matter, my ass.

The headaches and the hypersensitivity got so bad that I could barely function. Trying to put on a pleasant face during an interview or any kind of social interaction was — well, it wasn’t working. I couldn’t fake it. I was so physically miserable that my spirit couldn’t fight it anymore. And after a month or so of trying to walk it off, I had to give in to the damn withdrawal again. At this point I may have wanted to blow my brains out. I wasn’t exactly taking track and was having a hard time really giving a damn about anything anymore.

That was about two months ago as I write this. I’m taking a small dose of Xanax to help with the headaches, and although I can still feel a pounding in my head, it’s not killing me like it was before, and my hypersensitivity is gone. (But I don’t know how long I want to keep taking these pills.)

In the opening to her novel, Ordinary People, Judith Guest writes that to have a reason to get up in the morning, it is necessary to possess a guiding principle, a belief of some kind; even a bumper sticker will do. But I don’t know what the hell keeps me going anymore. I don’t know what my next move is. I’m still waiting around for the withdrawal to work itself out of my system, I guess.

I’m not so sure how high my confidence is flying right now, or even if it’s confidence that I’m lacking. Which leads me to a question of faith (not religion). This is a big one.

I’ll leave my final thoughts on that, though, for when we get to the end of this blog. Until then, what follows is a sample of how my post-withdrawal experience played itself out between February and July 2001. (July 2001 would be a year since my initial withdrawal experience.)

Monday, May 14th, 2001.

Alice wrote:

I was wondering, is it possible that going off 30mg of Paxil cold turkey may have affected me neurologically?

My response:

Yes, it may have affected you neurologically, and I often wonder the same thing, whether my cold turkey experience caused permanent neurological damage. And, despite my optimism at times, I don’t really know the answer to that question.

I have been off Paxil since November, but I am still feeling the effects of the withdrawal. Maybe the cold turkey withdrawal did cause permanent damage of some kind. I’m not sure. I can only wait and see how things go. My body and my mind have gradually been readjusting to being Paxil-free, but, for me, the adjustment is still going on, so I’m not able to say how permanent any of the damage is yet.

I can’t judge my level of anxiety or my mental state too well right now either because there’s nothing about my present situation which is socially normal. In February I tried to get back into the real world and find a job, etc., but I got hit with extremely bad headaches for a month before I finally had to come back to where I am now, out in the middle of nowhere, sitting around doing nothing, feeling useless.

My problem hasn’t been anxiety, per se. What I’ve been experiencing is extreme muscle tension, especially in my head and neck, but not exclusive to my head and neck. If you know how to crack your knuckles — my whole body makes that sound. I’ve tried to describe this before, but I’m afraid of sounding like some guy who wears a tinfoil hat to keep the alien signals from penetrating his brain through the fillings in his teeth. When I describe this stuff, it seems as crazy to me as it does to anyone else. But imagine the sound of your knuckles cracking. I get that around my head. My head feels like it’s filled with wet cement. It’s not like the electrical shock sensations, but it’s not much better either.
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