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.)

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.

Hi everybody,

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

Me:

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

Matt:

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

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

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

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

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

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

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

Man, when is this going to end?

First response:

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

Second response:

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

Third response:

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

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

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

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

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

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

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

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

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

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

First response:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Perhaps your window will stay open forever. Perhaps it’ll gradually close and then return to normal, as it did with me, as you continue to wean yourself off the Paxil. Whichever way the wind blows, if you got it good right now, I’d say make the most of it.

You might want to stay at 5mg until you’re ready to continue with the weaning. If you’re feeling really good right now, maybe hold on to that until after the holidays.

When I decided to go down to zero, I think I took 5mg every other day for awhile. Then I stopped altogether. Things got a little rough again at this point. On really bad days I took another 5mg, maybe once or twice. Then, still more or less at zero, I took an occasional sliver of a Paxil pill to ease my sensitivity to light and the electrical heaviness in my eyes, but I only did that once or twice over a period of a few weeks. I can’t remember how long I’ve been Paxil-free, but it’s been at least three or four weeks now, and although things still aren’t the way I’d like them, things have been getting slowly but progressively better.

I think when you decide to go down to zero, you just have to wing it. See what works for you.

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.)

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.

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.

Someone said, “I guess what is so frustrating is I can’t stand it that this drug has so much control over my body.”

You can put that on the top of my list too. You spend a good chunk of your life working out all the kinks of your personality, learning what works for you and what doesn’t, until you get to the point where things are pretty good. You’re more or less doing what you like and you’re pretty much a self-actualized happy camper. Some people even look at you with admiration. It was a bumpy ride, but you finally got it together and you know it, and it feels good.

Then you take a little pink pill called Paxil — and you can take the dignity of everything you’ve accomplished in your life and kiss it goodbye. The foundation of your personality turns to sand. Everything goes to hell and everyone sees you at your worst.

It’s what I hate the most. Absolutely the most. I’m not sure if I could live through something like it again. There’s no dignity to any of this.

Just had to say that’s one thing I really hate. Can I hear an Amen!

Response:

I started out at 2.5mgs the first two weeks, 5mgs the next two weeks. From the first day, I didn’t like the way I felt. Everything seemed unreal and unworldly. The doctor said the side effects would pass and that I should up my dose to 10mgs, which I did for the entire next month.

What side effects did I have? All of them — dry mouth, dizziness, urination problems, nightmares, zaps, brain slosh. You name it. When I again complained to the doctor, I was told I wasn’t even taking a “therapeutic dose” and that I really needed to take 20mgs.

For the third month, I did take 20mgs, but the problems did not go away — in fact, they intensified, so I stopped taking it altogether without a clue as to what lay ahead. Five days later, the withdrawal hit hard and fast, and I was completely debilitated with dizziness, zaps, vertigo, etc. My doctor was no help at all, insisting still that I should continue with 20mgs, or even go higher.

I was so ill that I called the pharmacist and he said I would have to go back on at least 10mgs and wean from there, which is what I did. I took 10mgs for a week or so, then went down to 5. At that point, I was shaving the tablets with a razor blade every day. When I got down to about 2.5mgs (where I stayed for a month), I went cold turkey. But the side effects persisted, lessening in some respects, but never completely going away. They gradually diminished over the next two years, but I’m still left with a host of weird glitches, word retrieval problems and memory loss being the two most debilitating, as well as light and sound sensitivity.

I thought that this was just me — until I really began to network with others whose problems also had not subsided, even though they had been off either Prozac or Paxil for months, and sometimes years. While most people eventually fully recover from the experience, there appears to be a segment of SSRI users whose recovery takes much longer. How long? There’s no way to know. There are people on the Prozac board who claim it took them five years to get back to their old selves. And this is my big problem with these drugs. There just doesn’t seem to be any way to predict who will have no withdrawals, who will have mild withdrawals, and who will have protracted symptoms. It appears to be totally unrelated to dosage, or length of time on the med. I’m really happy that these drugs have helped many people, but if I knew then what I know now, I would have never taken it at all. Nor would I wish my experience on anybody.

So, I guess it comes down to that saying “caveat emptor” — buyer beware [although we often place too much trust in our doctors for them to be aware, when clearly they're no more aware of the dangers than we are]. Everyone who takes Paxil (especially) has to weigh the short-term benefit against the possible eventual withdrawals. And this is something that the doctors don’t prepare you for — at least mine didn’t, and if you’ve read other stories, there is a haunting similarity.

P.S. (Sept. 2006): The added words in square brackets after “buy beware” are mine. Before I’m done re-posting Paxil Free, I think I’ll have to expand the Basic Facts list to include word retrieval problems. The person who responded wrote: “[The withdrawal effects] gradually diminished over the next two years, but I’m still left with a host of weird glitches, word retrieval problems and memory loss being the two most debilitating, as well as light and sound sensitivity.” As I mentioned on the first day of my re-posting of all this stuff, it’s been 6 years now and I still have problems expressing myself because I can’t think of the word I want to say — and I’m not the only one to experience these “glitches” (which is a good word for it). I also confuse written words so often these days that it’s embarrassing. Words like your and you’re; were and we’re; there and their. I have completely given up on ever trying to remember whether I want to use affect or effect. I’ve resigned myself to the fact that I’m going to get it wrong at least half the time now. It’s kind of depressing, especially for anyone who writes for a living… Is it possible to retrain my brain, to relearn all these words again? What the hell happened there? How did so many words and their meanings get wiped from my memory? Kind of disturbing, isn’t it?