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.

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.

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.

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.

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.

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.

I seem to be having the same sexual side effects (the dysfunction) that I had when I first took the Paxil, but what I’m experiencing now seems to be even worse. I’m not in an intimate relationship with anyone now, so it’s not a major problem, but still, it does kind of worry me.

So I’m wondering if anyone has experienced this while going through withdrawal (or post-withdrawal), and if you have, do things get better, or will I have to take Viagra for the rest of my life?

This is one thing I could definitely do without.

First response:

Speaking from a female perspective, the sexual thing did not get better with time for me. I’ve tried everything — it ain’t working. It’s as though the part of my brain that is involved in this process was damaged… and I think that’s just what happened.

Second response:

I have been off Paxil for about two months now and I feel very good, just an occasional brain creep here and there. The sex stuff I was embarrassed to talk about at first and I normally don’t post about it. Someone who visits paxilprogress.org once said that when his libido came back, it came back with a vengeance, and that is what happened to me. As I was reducing, it would come back like that for a week and then subside. When I was off completely it was bad for a couple of weeks. I could not even think straight half the time. Then it subsided way back. But now I am normal again, just right. So I think maybe you will be normal again it just may take you a little longer.

Postscript – February 7th, 2001: There were peaks and valleys (I preferred the peaks), but my sexual vitality eventually returned to normal. It took about a month or so. Right now I wouldn’t say I’m flying off the charts, but for a 30-year-old male, I’m probably right where I should be. (Sure enjoyed those peaks though.)

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.)

When my doctor prescribed me the Paxil, he didn’t inform me that anything like this could happen — because he didn’t know. GlaxoSmithKline knew all along but deliberately kept this information from the medical community. They deliberately misinformed everyone. Having experienced this injustice as intimately as anyone could, I find it very disturbing. If I knew someone was clearly getting away with murder, and the murder of a loved one, I might find it just as disturbing. Anyone who doesn’t recognize this as an injustice has got their head up their ass.

Under these circumstances, there’s plenty of reason to feel extreme levels of anger, frustration, depression, anxiety, and so on. The point is: I didn’t start off like this. Paxil did this to me. Paxil has taken away five months of my life (so far). I have been physically and mentally debilitated by this experience — in trying to get off this drug. I know what has happened to me. I’m not just having a string of bad days at work. Unless one genuinely does have a history of this sort of thing, I’d say it’s naïve to think that this is caused by everyday stress. No way, sister.

This is a neurological pathology brought on by Paxil withdrawal. Having electrical surges kicking in from behind my eyes is in no way caused by stress and anxiety. It’s the other way around. Speaking only for myself, I don’t have a single doubt about it.

First response:

Oh, the zaps are definitely Paxil related. I have NO doubt about that. The first time I got them was when I missed a couple of doses. I got “the flu,” but I kept telling people I’ve never had a flu bug like this that made me unable to move my head without — can’t remember what word I used at the time, but — a zap.

I have told friends who know what I am going through that a zap is like touching an electrical fence. Except, that instead of touching it with your hand, it is like the wire is touching your brain. That is where it starts, and then it goes down your back, front and down your arms and fingers. I can have one, or three in a row.

Second response:

I totally agree with you! I have had migraine headaches in the past, but these are different! Sometimes I think it is just another sinus headache, but it feels different. It’s in the eyes and there’s a vertigo feeling. The electrical impulses in the brain are misfiring. It only makes sense if you think about it.

I am still on my miserable 7.5mg a day, but I am beginning to feel (I think). Today while driving home from work I began to feel sad and I started to cry. I was thinking about some unresolved issues that were the impetus to me taking Paxil in the first place. At first I was depressed about feeling depressed, but I began to realize, “Hey… I am feeling again! This is a good sign, not a bad sign!”

Paxil is a mind controlling drug. No better way than to turn us into Zombies by shorting out our brains. Accident?… I wonder!

Thanks! You always make me think, and just at the right time. Keep the information coming. It makes me want to keep fighting! I needed that tonight!

Third response:

I feel the same about the electrical charges. They can be horrible. They make it impossible to concentrate. At times I was afraid to move my head. One day on a weekend I layed on the bed and with my eyes closed all day. Every time I would open my eyes the charges would surge. If you haven’t had them it is difficult to explain to anyone. Concentration was nil, along with moving my head.

When I mentioned this to the doctor he looked dumbfounded — he has been in practice as a psychiatric doctor for years. His reply was that he had heard of people getting them in their legs. I knew I was in trouble then.

I do not know if other SSRIs do this when withdrawing. I would have liked for him to have had experience with SSRIs first hand so he would have had a better understanding of my situation. I told him this in a very nice why. He grinned. Yeah, funny.

Half these doctors need to listen a little more to the patient and forget what the drug representative tells them over a cocktail.

Fourth response:

You’re right. The electrical charges surging through our brains are NOT stress-related. I swore that I was either being electrocuted or having a seizure. And there were times when I swore that my braining was FRYING! Taking Paxil is the worst thing I have ever done in my life. This has been three years of hell. My life will NEVER be the same.