Paxil Free

Saturday, July 8th, 2000 (continued).

Kathy said, “My eye specialist said there is no connection between Paxil and intrasocular pressure.”

I don’t think the medical community really knows the full effects of Paxil. FACT: The long term effects are UNKNOWN. As for the effects on the eyes or eye-related nerves and muscles — I think there is most definitely an effect on eyesight. During my 6th day of Paxil, when I looked at anything which emitted light (such as a television, a bright window, a computer monitor), the objects looked at if they were faded or being drowned out by a bright overhead light source, and it took my eyes longer to focus. Plus, when I moved my eyes from left to right I experienced the “electrical surges” in my temples.

I don’t think the medical community really knows what Paxil does. When looking up professional articles on Paxil (probably the ones your doctor has read), many of the side-effects of taking Paxil are listed, but I don’t know any which list the effects of withdrawal. By the 6th day of withdrawal, though, my vision was definitely affected.

P.S. (Sept. 2006): All names have been changed to protect the privacy of the individuals involved (including my old doctor). “Kathy” was someone who used to post on a message board. Furthermore, many of these messages originally appeared on a Paxil withdrawal message board that was eventually overun by trolls. All references to that message board have been removed and replaced with paxilprogress.org, which I assume is still a good forum for discussing Paxil withdrawal.

Tuesday, September 25th, 2000.

Well, today it my 20th day of weaning of 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.

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, 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.

Saturday, November 25th, 2000 (25th day off Paxil).

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

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

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

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

This is a serious impairment on my brain function.

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

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

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

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

I mentioned to him today how my libido went through the roof a few weeks ago and stayed that way for about two weeks, but how that peak period of vitality has since come and gone. This was around the period in the weaning when I was almost off the Paxil completely. It might have kicked in during the last few days I was on 5mg. That peak period lasted about two weeks after that and now it’s gone.
Read more

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.)
Read more

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.
Read more

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.

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

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

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

Friday, December 8th, 2000 (38th day off Paxil).

From Joe:

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

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

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

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

Friday, December 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.
Read more

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?
Read more

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.

Read more

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.