Paxil Free

A personal record of Paxil withdrawal.

Archive for the 'Dizziness – Vertigo' Category


Basic Facts – #1: Electric Shock Sensations

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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#2: The Paxil Flu

March 11th, 2001. (Basic Facts – continued)

The Paxil Flu is also known as a complete shut-down of the immune system. It’s most likely to occur at its worst by withdrawing from Paxil cold turkey (which should NEVER be done; if your doctor told you otherwise, you need to find yourself a new doctor NOW). The Paxil Flu also occurs for some people even while they’re weaning slowly. Paroxetine withdrawal is a neurological trauma, and like any traumatic or stressful event, it can have a drain on your vitality, your health and your overall strength. Therefore, you might want to take supplements of certain vitamins which will become depleted by the stress of the withdrawal (B-complex, Vitamins C and E for starters).

Often included with the Paxil Flu are unusual ailments which doctors have no explanation for — and which, in their ignorance, they don’t connect to paroxetine withdrawal. Your doctor may perform every kind of test on you and then say, “I don’t know what’s causing it,” or the classic, “There’s nothing wrong with you” — while in the meantime you feel like you’re dying.

During my cold turkey withdrawal, besides extreme dizziness, headaches and body aches that could register on the Richter Scale, I developed growths under my tongue which were painful and would bleed at the slightest touch. Eventually I had a biopsy performed and my doctor said,”It’s normal tissue.” Great.

It seems to me that most of these medical anomalies are related to the effects of paroxetine; we just don’t how — and neither does the medical community.

The good news about the Paxil Flu is that it can be prevented through a proper use of vitamin supplements, a healthy diet (which does not include caffeine, cigarettes or alcohol) and regular exercise. It’s a simple straight-forward solution, and you’d be surprised at how well it works.

P.S., If you smoke cigarettes and you know you’re hooked, don’t try getting off them now. Caffeine you can probably wean yourself off without too much harm, but nicotine is another story.

#4: “But Paxil Saved My Life”

March 15th, 2001. (Basic Facts – continued)

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

In order to make their billions of dollars in profits from this drug, GlaxoSmithKline, by not being upfront about the potential effects of paroxetine, essentially lied to the FDA to get approval for Paxil and then continued to perpetuate that lie by hiding the information they had about the full effects of Paxil withdrawal from the medical community.

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

When I first took Paxil, it did help. But when the time came to stop taking it, I suffered through the worst hell of my life — and all of it could have been prevented had GlaxoSmithKline told the truth from the start.
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#12: Fatigue and Nausea

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

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

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

* * *

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

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

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

#13: Depersonalization.
#14: Verbal and cognitive difficulties such stuttering, stammering, poor concentration, word-retrieval problems and loss of memory.
#15: Sleep disturbances such as nightmares and vivid and unusual dreams.
#16: Depression and so-called relapse.
#17: Digestive problems like diarrhea.
#18: Feeling scared most of the time.

You know, fun stuff!

Check out paxilprogress.org’s FAQ page for more info.

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

My Side of the Story

April 7th, 2001.

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

However, the Paxil did provide a certain calm which allowed me to deal more effectively with the emotional trauma of the experience I had gone through. (For my own privacy, I’ve chosen to withhold the exact details of that experience.) It seems to me that Paxil regulates one’s emotions so that they are more manageable. How exactly it does this nobody really knows, but there are a few theories out there which I think have some validity to them.
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Never Stop Cold Turkey (2000)

This post is the beginning of the journal portion of this blog — the almost-daily record of my Paxil withdrawal experience from July 2000 to January 2001. I haven’t decided how much of it I’m going to revise or delete. I’ll just work my way through it and see how it goes.

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

…including this postscript (June 9, 2010): I drop by here maybe once a year. Inevitably I end up reading the website and feel like rewriting some of it. So I do (particularly the angry blaming parts of it). Sometimes I make small changes to the text. Other times I add new post scripts. So don’t be surprised if you read a page and come back to it at a later date to discover that it’s changed a bit.

* * *

Thursday, July 6th, 2000.

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

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

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

Thursday, July 6th, 2000 (continued). An email to a friend:

My head feels like it’s filled with helium. This is the weirdest physical sensation I have ever experienced. It’s a physical feeling in my head, which is an unusual place to experience physical sensations other than headaches. And if this doesn’t show any signs of letting up by tomorrow, I’m going on the pills again. It’s almost a physical disability; there’s no way I could work while this is going on.

Dr. Wyndham said I could stop taking the pills without easing myself off it, so that’s what I did. But since I’ve been feeling these whacked out after-effects, I’ve done my own research on the ‘net, and every source I’ve found has said that one should not stop taking Paxil cold turkey, that the best way to go is to ease oneself off it.

I realize the ‘net may not be the most reliable source at times, but everything I’ve read so far from professional sites tells me to do the opposite of what Dr. Wyndham told me — and seeing how I’m feeling some seriously whacked out effects here, I’m a little concerned, and I’m thinking about going back on the Paxil. Dr. Wyndham said I shouldn’t have to go back on it unless going off it made me feel suicidal or severely depressed. I’m not really experiencing any kind of major depressive thoughts or feelings — but sometimes I think I easily could; I don’t know why I’m not.

So naturally I’m concerned. There’s no way I can work 9 to 5 while this is going on.

I had insomnia for most of last night. My appetite seems to have come back today. But I am so light-headed as to be almost disabled — I’m serious. Two or three times a day I have moments where I want to cry uncontrollably and usually do (today’s the second day of that).

I’m probably going to go back on the Paxil tomorrow if these symptoms don’t let up. I’m not depressed (I don’t think so), but my head feels like it’s full of helium every second of my waking day.

I think I could slip into a severe depression if this keeps up much longer.

One Method of Weaning

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

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

The Brain Zaps

Saturday, July 8th, 2000.

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

Meanwhile back on the farm…

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

Tuesday, July 11th, 2000 (continued). This is an excerpt from an email I sent to someone who has also gone through Paxil withdrawal:

Most of the stories I’ve read on various bulletin boards are not happy stories, but nonetheless, from what I can tell there are varying degrees of the “brain zaps,” depending on how long someone was initially on the drug, how much they took, and how fast they tried to get off the Paxil. It’s easy to do the math: cold turkey will always put you through hell (not one single person said their cold turkey withdrawal wasn’t a living hell), and the more you take and the longer you’ve been on it, the worse the withdrawal (cold turkey) will be.

My withdrawal was a “horror” like Brando says at the end of Apocalypse Now. And to avoid coming anywhere close to that kind of experience again, I’ll be weaning myself off Paxil very slowly. That means, for me, lowering my dosage from 20mg to 15mg every other day, alternating between 20 and 15 until I’m feeling brave enough to lower it by another 5mg. And then I plan to keep going like that however long it takes. I don’t care about a decreased sex drive or any of the other side effects; compared to the withdrawal I experienced, it’s a walk in the park. I’m not going to try to go off the Paxil for at least another week or two, not until I start feeling completely myself again; then I’ll probably stay there for awhile before I find the guts to try to wean myself off the Paxil. But I’m guessing, for me, starting from the first day I lower the dosage by 5mg, it’ll take me at least three months to get off it.

Your weaning off it may not have to be as slow though. I think you’ll know how fast you can go by how well you’re reacting to the withdrawal. You might want to get through it as fast as you can, but don’t. Take it as slow as you can; that seems to be the least traumatic way for everybody who has successful gotten off it.

I’m not overweight (although I think I may have put on some love handles while on Paxil) and I’m in good heath and good spirits (except for the withdrawal), and my side effects were extreme dizziness and the brain zaps. Sleeping was almost impossible; my appetite was totally whacked; I had flu symptoms; my bowels weren’t very pleasant; and I kept sweating through the sheets whenever I tried to sleep or whenever I walked around for more than 15 minutes. When I wasn’t walking or sleeping, I didn’t sweat. When I did sweat, I stunk like an open sewer.

Day 13 of Weaning

Monday, September 18th, 2000.

Today is my 13th day of weaning off Paxil. One week of alternating between 20mg and 15mg, then one week of just 15mg. I’m beginning to think I should have alternated for more than a week. I was going to begin alternating between 15mg and 10mg this Wednesday, but I’m having second thoughts; I may wait a little longer.

I’ve been having headaches for the past few days, I was extremely tired one day, and when I stand up fast I get dizzy. It’s a regular dizziness that doesn’t even compare to the dizziness of cold turkey withdrawal. My spirits aren’t nearly as positive as they were during the first week of weaning.

But what I’m feeling right now feels like a precursor to more severe symptoms. It feels like the worse is about to come. And I’ve begun to feel a little uneasy again, a little worried. I have a feeling the “weepiness” is going to hit me soon. And I hate this not having control of my life. Again, what I’m experiencing now is nothing compared to my cold turkey withdrawal from a few months ago, but that doesn’t give me much comfort.
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Day 15: Having to go Back on Paxil?

Wednesday, September 20th, 2000. From a Paxil-withdrawal forum similar to paxilprogress.org:

Colin said:

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

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

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

Tuesday, September 25th, 2000 (continued). In response to a post from a Paxil-withdrawal forum:

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

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

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

I don’t think you’re going crazy. You just may have gone off the Paxil too fast. And you may have to go back to a comfortable dose and then gradually wean yourself off the Paxil — slowly.
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Day 23: Weaning and Xanax

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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Day 20: A Good Day

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.

Day 32: Spiritual Healing Theory

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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Day 53: Feeling Better

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.

The Electrical Surges = Stress (Day 83)

Tuesday, November 28th, 2000 (28th day off Paxil). In response to a message on paxilprogress.org:

I don’t think the paresthesia/electrical sensations in my eyes and my head are caused by anxiety and stress. I had plenty of anxiety and stress before I went on and subsequently tried to get off Paxil, and it’s NEVER felt like this. I have had tension headaches in the past, but what I’m experiencing now is something completely different altogether.

The zaps are the cause of the anxiety and stress, not the other way around.

This isn’t an argument to me. It’s a statement of fact. I tried getting off the Paxil and immediately, for the first time in my life, began experiencing the brain zaps. This is the most obvious, simple, straight forward equation. It’s a neurochemical reaction that’s happening in my brain because of this drug. If I’m feeling any anxiety, depression or stress, 95% of it is coming from this experience of trying to get off this drug.

Overall, I have been physically and mentally healthy my whole life. My doctor keeps asking me, referring to the brain zaps and the electrical heaviness in my eyes, “Are you sure you’ve never experienced anything like this before?” I’ve never taken an anti-depressant before Paxil, I’ve never “experimented” with LSD, cocaine or anything stronger than pot, and when I did, I was never a dopehead. I’ve never been an alcoholic. I don’t have a history of this sort of thing. I have no doubt that these electrical sensations in my head are caused by the Paxil.

I wasn’t feeling any stress or anxiety until I tried getting off the Paxil, and what I’m experiencing now is not due to any pre-existing condition that I know of. I may be feeling depressed, and I may be experiencing some anxiety — but my brain goes into an electrical seizure every time I move too suddenly or move my eyes too fast or have any kind of bright light shone in my face. Is not a little stress and anxiety a normal reaction to such a disturbing experience? I’d say it is. (Some people may say to this, “Get over it. ” But I’ll get over it once it stops.)
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Weaning (Day 86)

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.

Setbacks

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.

Suicidal Feelings Again

Friday, December 1st, 2000 (continued). Responding to a post on paxilprogress.org:

I’ve always been able to deal with the emotional symptoms (e.g., the suicidal feelings) easier than the other symptoms (e.g., the electrical surges). The electrical sensations just about drive me insane. More than any of the other symptoms, they’ve made it impossible to be me and to do what I love to do.

I have felt on-and-off suicidal since my first cold turkey experience in early July. I still haven’t completely shaken the feeling, but I can tell you that it subsides to the point where it’s just a faint echo of what you’re feeling now. You’ll remember it, and in a sense it’ll still be there, but you won’t feel any urge to go through with it.

The only way to get through now it is don’t kill yourself (simple, right?). Your body and your brain are going through one serious motherload of a neurochemical adaptation. You have to give yourself a chance to get through it and to go through it. As you know, there are some sudden benefits to getting off the Paxil — I’d say focus on those right now and enjoy them as much as you can. And the next thing you know, you’ll be feeling crappy, but you won’t be feeling suicidal. And that’s progress. And gradually everything gets better. That’s the only thing I can say with some confidence.

It’s been a long dragged out experience, but a little tiny bit at a time, I’ve gotten better. So don’t kill yourself and you will too. And don’t forget to take plenty of B Complex.
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Progress (118 Days of Weaning)

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.)

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