Paxil Free

A personal record of Paxil withdrawal.

Archive for the 'Cold turkey' Category


Introduction (2001)

February 28th, 2001.

I began taking Paxil, paroxetine hydrochloride, for depression and post-traumatic stress shortly after a traumatic event in November of 1999. By July 2000, ten months later, my doctor and I agreed that I was doing well enough to stop taking the medication. So I followed his medical advice and discontinued the Paxil. Within 24 hours, I experienced such severe paroxetine withdrawal that I eventually became suicidal — and it scared the hell of me. The neurological trauma of paroxetine withdrawal was more physically and mentally debilitating than any kind of depression I had ever experienced.

Most of the records I kept during my withdrawal experience were in the form of messages I posted to Paxil withdrawal support groups similar to paxilprogress.org. Saved on this blog are the most informative of those messages. The postings appear in the order in which they were written, along with all the relevant responses I may have received.

It is a record of my withdrawal experience, not because I’m vain and I like listening to myself talk, but because it’s the only record I kept, and having reviewed all of it recently, I can see that it presents the reality of the experience more accurately than anything else I’d have the energy to put together right now. Along with a support group such as paxilprogress.org, I can’t think of anything more valuable for someone living through paroxetine withdrawal than to read exactly how someone else survived it.

While it’s true that there isn’t a whole lot of fun to be had for someone living through the effects of Paxil withdrawal, the important thing to remember is that you can survive it. That may not sound like much right now, but I have done it and so have many others who had it worse than me. If there’s one thing to learn from the record and testimony on this site, perhaps it’s how to smooth out some of the bumps in the road ahead so that when the worst of it comes at you, it doesn’t knock you so far down that you can never get up again. It can be overcome. As unbearable as it may seem at times, it will eventually go away, and you’ll be all right.

Okay, maybe not all right, but I’m pretty sure you’ll feel at least a thousand times better.

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.

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.

My First Reaction

Friday, July 7th, 2000 (continued).

This is an email message I wrote to a professional counsellor I was seeing this past year (just wrote it today).

I went through some traumatic events this past year that eventually led to my taking 20mg of Paxil every day. The Paxil helped get me through the year. After I got my life back on track, I decided I didn’t want to be on the Paxil anymore (I didn’t want to be on it in the first place, but I was completely desperate at the time, and it did work well for me). So my doctor, who has been a good doctor for me and who I trust, said I could stop taking the Paxil cold turkey. He said I might have mild nausea, headaches, a little dizziness for a couple days, but that it would go away. (How many of you are laughing at that sentence?)

About six days ago, I stopped taking the Paxil. And for the past three days I’ve been barely functional. For the past 72 hours I’ve experienced these wonderfully debilitating electrical surges in my brain every time I move my eyes. (Try going through a day without moving your eyes.) I feel like I’m losing my mind.
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Weaning Slowly

Friday, July 7th, 2000 (continued). This is a response to someone’s question about weaning (I don’t have their original message):

From what I know (and I’ve learned an amazing amount in the past 24 hours), dropping from 40mg to 20mg is too fast. Just today I had to go back on it after six days of hell after going cold turkey (doctor’s orders, the cold turkey that is). Once I get back to myself again (already the brain zaps are gone), I plan to ease myself off as slowly as I can — I don’t care how long it takes as long as I can get off it. No matter how you do it, though, everyone says to go slow; you cannot rush it.

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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Different Effects

Sunday, July 9th, 2000.

Some people have stronger reactions to Paxil. I know people who are taking Paxil, 20mg a day, and they look sedated. They say when they take the Paxil in the morning, they’re high the rest of the day — so they don’t take the Paxil in the morning; they take it at night just before they go to bed and it works for them better that way. These are people I know who can’t function without Paxil and will probably take it for the rest of their lives.

That’s not the situation I’m in and I plan to wean myself off it eventually. But as someone who has recently experienced the horror of going off it cold turkey like my doctor said I could, my advice (and the advise of everyone on this board [similar to paxilprogress.org]) is to wean yourself off it slowly whenever you do decide to stop taking it. Also, it’s possible that the longer you’re on it, the harder it is to get off it. And if after 3 months on Paxil you’re still feeling somewhat sedated or dulled, you may want to try lowering the dosage by 5mg (or take the pill before you go to bed).

I wouldn’t recommend staying on the Paxil for more than a year. Talk to your doctor but listen to the people on this board too. (It seems that most doctors are not very well informed.)

My Immune System / Back on Paxil

Monday, July 10th, 2000.

Today is my 3rd day back on Paxil after going through the hell of cold turkey withdrawal by my doctor’s orders (my plan now, of course, is to wean myself off it slowly). The electrical surges in my brain immediately disappeared — and that’s the only thing I care about — and I’ve been feeling sleepy with a slight headache ever since. I’m sleeping like a dog, although the timing is still a little bit off (I’m working on that).

Also, my immune system is back to normal. I didn’t realize it at the time, but my immune system went right down the toilet the second I went off the Paxil cold turkey. I had a slight sore throat at the time, which, along with the inside of my mouth, immediately became inflamed and incredibly sore. One side of my gums were swollen and painful and my throat was killing me the whole time.

It’s my 3rd day back on the Paxil and most of that has cleared up on its own.

Did anybody else experience flu symptoms while they were trying to get off the Paxil?

Postscript – February 3rd, 2001: The answer to my question, Did anybody else experience flu symptoms while they were trying to get off the Paxil?, was of course YES. I lost count how many people said YES. I experienced then what those who have lived through paroxetine withdrawal call The Paxil Flu. It’s more than a bad case of the flu. It’s closer to a total breakdown of the immune system. Before I began to wean myself off the Paxil, I started to take daily vitamin supplements, B-Complex especially. That, along with as much regular exercise as I could manage, helped keep me healthy for the duration of my withdrawal (which lasted close to seven months).

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.

Most Doctors Don’t Know

Wednesday, July 12th, 2000.

It’s true that some doctors are now becoming aware of Paxil withdrawal. I sent an email to my doctor after I experienced the living hell of cold turkey withdrawal, and yesterday he got back to me. I’ve included his reply in this message just so some of you (at least in Canada) can get an idea where general practitioners are in their understanding of Paxil. It seems that those of us who experience extreme withdrawal are learning about it as our doctors are learning, if not faster.

I’ve edited my doctor’s email message here, removing any remarks that could identify him:

I am sorry that you had such a bad experience on stopping the Paxil. You are right when you state that I was ill-informed when I advised you that withdrawal symptoms would likely be mild and transient. I gave you that information based on the year 2000 edition of the Compendium of Pharmaceuticals and Specialties [C.P.S.] which is the information source most widely used by physicians in Canada. You should be pleased to know that physicians are becoming aware of distressing adverse effects of withdrawal from SSRIs such as Paxil… I recently attended a continuing medical education session on the management of depression where the speaker who is a psychiatrist spoke at some length on ‘withdrawal syndrome’ and the need to taper SSRIs rather than stopping ‘cold turkey.’ I plan to report your experience (without identifying you) to the Canadian Adverse Drug Reaction Monitoring Program at Health Canada in Ottawa. Hopefully they will include a warning to Canadian physicians in the next issue of their Adverse Drug Reaction Newsletter.

P.S. (Sept. 2006): I wonder if doctors are any more aware today of the effects of paxroxetine withdrawal. Is the CPS still “the information source most widely used by physicians in Canada”? Is the CPS still heavily financed by the pharmaceutical industry? I wonder how much has changed in 6 years.

5th Day Back on Paxil

Wednesday, July 12th, 2000 (continued).

Today is my 5th day back on Paxil after going through cold turkey withdrawal.

I felt tired yesterday and a little depressed, and then around 10:00pm I seemed to get a second wind (after eating a large supper). But it also left me wide awake and I couldn’t go to sleep, not until about 1:30 in the morning.

I woke up this morning feeling depressed. My dreams seem to have a strong effect on my moods. I’ve never been a morning person, but I hate waking up feeling like I don’t want to get out of bed.

I’m tried to have a good breakfast and put good things into my body (I’m learning more about proper nutrition). Before my going cold turkey, I was feeling really good. No depression at all, positive spirits, no “social anxiety,” no fear underlining my actions. Now, having gone through the hell of withdrawal and then going back on the Paxil at my regular dose, all of those things have been affected. — And I’m am dying for a coffee and a cigarette (but saying no to both).

So-called Relapse

Wednesday, July 12th, 2000 (continued).

This is still my 5th day back on the Paxil after trying to cold turkey. I’m taking 20mg, my regular dose, but if you can believe it, I’m considering increasing it.

Before I went off the Paxil cold turkey as my doctor ordered, I was feeling fine. Happy, functional, smiling joe. Now my 5th day back on Paxil after my terrible cold turkey withdrawal experience, all of my withdrawal symptoms have long gone, and the headaches and the sleepiness I experienced when I first got back on the Paxil have also disappeared.

All I’m left with now is feeling depressed. My body feels fine, but emotionally I’m feeling depressed and easily saddened.

I plan to wean myself off the Paxil, but I need to feel not depressed before I do that. Right now — or at least today — I don’t have the guts to do anything. And I’m not used to feeling like this. It’s not overwhelming yet, but it is interfering with my ability to do what I want to do; that irrational, underlying fear is there. I’m fine when I do talk to people, but I’m not feeling as brave and easy-going as I was before.

I don’t want to increase my dosage. I’m trying to eat well, trying to get outside, trying to be positive, but I don’t feel like any of it. I’m hoping this will pass. I’m hoping I don’t have to increase the Paxil.

I’ll be making a doctor’s appointment today, but does anyone whose been through this having any suggestions? (I hate this shit!)

P.S. (Sept. 2006): That’s the vicious cycle of Paxil. You take it because you feel depressed or you’re axious in social situations. But once you stop taking it, whatever depression or social anxiety you experienced before doesn’t just come back — it comes back with a vengence. Some call this relapse, but how do you relapse into a condition that is worse than what you started with? This is one of the many ways paroxetine messes with your nervous system. Paroxetine may not be considered officially an addictive drug, but I’ve heard from heroin addicts who had an easier time going clean. (See also the Wikipedia entry for SSRI discontinuation syndrome and paxilprogress.org’s Published Withdrawal Studies.)

Time Wasted

Thursday, July 13th, 2000.

Okay, today is my 6th day back on Paxil after my attempt going cold turkey. I still plan to wean myself off it, but not yet.

After going back on the Paxil, all the withdrawal effects disappeared — to be replaced by sleepiness. And then on the 4th day, I felt a tiny bit depressed and still sleepy. On the 5th day, I didn’t feel sleepy, but I felt definitely depressed. And today, the 6th day back on the Paxil, I just woke up and I’m not feeling the depression I felt yesterday (at least not yet; I just woke up 30 minutes ago).

So judging from the first day I went off the Paxil cold turkey (as my doctor ordered), up until today, about two weeks of my life were pretty much a write-off. That’s how much of my time this crap wasted.

But I’m trying not to dwell on that, because that’s depressing. I’m certainly not happy any of this happened.

I have noticed, though, that I feel considerably better after I’ve eaten a good meal. And I’m learning what better food to put into my body to give me more energy, which usually translates into more positive mental energy.

Postscript – February 26th, 2001: Here I am grieving over two weeks of my life which were stolen from me because of my initial withdrawal experience. Considering that the worst of the withdrawal would stay with me for about another seven months, it’s no wonder that my perception of time became distorted.

Initial Effects of Paxil

Thursday, July 13th, 2000 (continued). In response to a comment on left on a Paxil-withdrawal website that I have since misplaced:

I didn’t have dilated pupils when I went on Paxil. The main thing I felt was a bit of numbness is my hands and a slight lethargy, kinda dragging myself around a little. Which at the time was exactly what I needed because I was going through too much stuff at once and my nervous system was on overload. Feeling the numbing effects of the Paxil gave me something to fight against. Seeing how everything else in my life was out of control and I was beginning to lose my determination, fighting against a little pill was a synch.
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Better to Wean

Friday, July 14th, 2000.

There is no way I will be silent about what’s happened to me. But right now I’m back on the Paxil only because the brain zaps were killing me. Today is my 7th day back on Paxil (previous to that I was experiencing withdrawal syndrome), and only in the past day or two have I been feeling like myself again.

My plan is to wean myself off the Paxil eventually. If you’ve only been off four days cold turkey, it’s going to worse before it gets better. Some people bear it out; I couldn’t, and you may want to go back on it too — knowing that you can wean yourself off it. And weaning is definitely less traumatic than cold turkey.

Sleeping

Friday, July 21st, 2000.

In my previous posts I mentioned that I’ve been back on Paxil for about a week or so after the hell of going cold turkey, and that, although I’m feeling better than I was during the withdrawal, I was feeling depressed occasionally in a I-don’t-want-to-live sort of way. I’ve been doing my best to walk it off, so to speak, but last night I made an effort to go to bed early and not stay up late as is my tendency.

It made a difference. I slept all night and woke up feeling more myself. I’m not feeling depressed; I can usually tell the second I wake up whether I’m feeling depressed or not and whether I’m going to feel depressed or not. And right now I feel good.

I read that during deep sleep, serotonin production increases. So I didn’t have to take a pill; I just had to get some good, natural, unmedicated sleep. It did the trick. I’m not going to begin weaning myself of the Paxil just yet, but I wanted to mention that a good night’s sleep can make a big difference (for those of you who stay up late and wonder why you’re feeling depressed). I’m going to do more research on this.

The Passage of Time Changes

Sunday, September 3rd, 2000.

Background information: I began taking Paxil last year after some unfortunate but traumatic events led me into a depression. After getting over all these experiences, and in a position to move onto greener pastures, I followed my doctors orders and stopped taking Paxil cold turkey. That was a couple months ago.

When I tried getting off the Paxil cold turkey, I went crazy for six days, and then decided to go back on it. But since then I haven’t been the same. Besides the trauma of the withdrawal, which I was totally misinformed and uninformed about, I’ve been feeling more apathetic than I was before I was even on the Paxil. If I told my new doctor this, he’d probably want to up my dosage. Screw that.
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The Weaning Begins (Day 4)

Saturday, September 9th, 2000.

Today is my 4th day of weaning myself off Paxil, but this time I’m doing it slowly. The first time I stopped was cold turkey because my doctor said it was okay to do that. That was a few months ago, and I haven’t been the same since.

It took me this long to get my courage back up to give it another try. Outwardly, I appear pleasant and calm, but inside I’m scared and have been at least for the past month anticipating getting off the Paxil again. As well informed as I’ve become since the hell of my initial withdrawal experience, I’m still scared. Everything I went through during my withdrawal has definitely left an impression on me, and one that I’d much rather have done without.
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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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Day 16: Wanting My Life Back

Thursday, September 21st, 2000.

Carol said:

I am just so upset because I was put on this for depression and the depression is worse getting off this stuff. I just want my life back.

I want my life back too. I’m in the middle of weaning, and although it’s going relatively smooth, I can still feel the Paxil in me. I don’t think I’m going to feel like myself again until it’s completely out of my system.

As far as feeling depressed again, I got really depressed after my cold turkey withdrawal — and this is after having gone back on the Paxil. I just couldn’t handle not having control over my life again. This is a general feeling I’ve been dealing with since my bout with post-traumatic stress last year. Since then I’ve gone through a series of experiences where I couldn’t do anything about what was happening to me, and then just when things started to look settled again, I followed my doctor’s orders in July and went off the Paxil cold turkey, and wham-o, down I go again. I’m weaning myself slowly off the Paxil now; I’m more or less standing on my own again, but my legs still feel pretty wobbly.
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Wanting Rest

Thursday, September 21st, 2000 (continued).

I began therapy for post-traumatic stress (PTS) last year. It helped more than anything else could have. It was absolutely the best thing I could have done. Since then I have had other things happen (including my initial Paxil withdrawal) where I felt like I didn’t have any control over my life. I have dealt with the PTS, and I don’t have anymore symptoms (no “flashbacks,” etc.), but so many other things have happened (nonstop it seems) since my initial PTS experience that I just haven’t had the time to rest and recover, to re-evaluate, etc.

I was feeling ready to get on with my life this past July, and so — following my doctor’s orders — stopped taking Paxil cold turkey. And you know how the story goes from there. The only thing I’m afraid of now is what’s going to happen to me next as I continue to wean myself off the Paxil. I keep trying to stay composed, but I am scared out of my mind every step of the way. I can feel those ***king brain zaps ready to pounce on me once I go down to 10mg, and I am not looking forward to it. That’s the only fear that I’m feeling. And that’s a real fear whereas the fear from PTS is largely irrational. PTS was no fun at all, but Paxil sure the hell doesn’t make it any better.

In my work, I can usually write two to three thousand solid words a day. I doubt I’ve written that much in all of the past two weeks. I’m getting through this, but I’m getting sick of it too. I know all about PTS. But most of what I’m experiencing now is just a pain in the ass.

Havoc on the Immune System

Thursday, September 21st, 2000 (continued). Responding to a concern someone had about a weird lump in their throat:

From my own experience of cold turkey withdrawal from Paxil (which lasted six days before I had to go back on it); from what I’ve read online; and from what I’ve been able to read in the medical literature, Paxil — and withdrawing from it — plays havoc with your immune system.

Almost everyone (especially those who go cold turkey) seems to come down with flu symptoms while they’re trying to get off Paxil — but that’s just the tip of the iceberg.

When I tried getting off Paxil, besides coming down with the worst flu of my life, the brain zaps and blurred vision, I also had cancerous-like growths show up inside my mouth, particularly under my tongue. Eventually these painfully large growths seemed to fill with blood and begin to bleed whenever I ate something that rubbed against them. I had one particular tumour that didn’t go away for a month, then disappeared for a week and then came back. Several times I thought of going to the doctor because I was sure I had some kind of cancer, but some days the tumour was there and some days it wasn’t. Eventually it went away.

That’s just my little story.

If you don’t take vitamin supplements already (e.g., B-Complex, at least 50mg a day), then start now. Extra doses of Vitamin C and Calcium/Magnesium wouldn’t hurt either.

But my feeling is that you don’t have anything wrong with your throat. Once the Paxil and everything else is flushed out of your system, that lump in your throat will go away. By now you probably think you have throat cancer (and I know how convincing the experience can be), but I think when everything is over done with, you’ll be fine.

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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Thoughts of Suicide (Day 60)

Preface (Sept. 2006): For awhile after my initial withdrawal experience, I thought I might actually have a chance of getting on with my life if I pushed hard enough. I was wrong, though I didn’t know it at the time. Psychologically, I was in fragile condition. Then one day an incident occured that pushed me over the edge. I’ve decided to remove all the details of it because I don’t want the person involved in the incident to think they drove me to near-suicide. If the following post doesn’t make a lot of sense, that’s why; it’s heavily edited. I was also in a very messed-up state of mind at the time, and it shows.

Sunday, November 5th, 2000 (5th day off Paxil). A journal entry:

…the effects of the cold turkey Paxil withdrawal were totally unexpected and disturbing. Debilitating and nearly constant electrical surges in my brain; they wiped me out. Unable to take any more of it (I gave it a week, a week where every day it got progressively worse), I started taking the pills again. The symptoms went away, but, in a sense, something else went away. And I haven’t been myself since.

A couple weeks after my cold turkey withdrawal, I was driving alone down a long stretch of highway and I pulled over to the side. I reached down into a bag on the floor of the passenger side, looked over my shoulder to make sure I wasn’t about to be ploughed into the ditch by an 18-wheeler, pulled out my notebook and scribbled down a thought that had just occured to me.

The car was still running. I don’t know how long it took me write down the words, probably no more than five minutes. I looked at what I’d written to make sure my handwriting was at least semi-legible. It was. I then got the car going down the shoulder of the highway as fast as I could without crashing, turned onto the highway and away I went…
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Bursts of Anger (Day 79)

Sunday, November 24th, 2000 (24th day of Paxil).

Sarah wrote:

I have been off Paxil for 10 months now, and I still get very upset for no reason. I would assume most people don’t after getting off Paxil, but I do! I had a very, very hard time getting off Paxil, and I never wish to go through that again.

Paxil changed my whole personality when I was taking it, but when I got off Paxil, I found it very hard to find the personality that I once had.

Through reports and research that I have done on Paxil, this seems to be a common factor. They don’t know why or how. But I will tell you, and you probably already know, Glaxo SmithKline has yet to accept any responsibility. Through reading and studying about Paxil, there seems to be many changes in personality that do take place. Read Medscape on the internet for any update information. It is a very informative database.
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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.

Trying to Lead a Normal Life

Friday, December 1st, 2000 (continued).

Anne said: “I have a test Monday evening, and I am having a hard time trying to get into it.”

Since I’ve been weaning off the Paxil, I’ve been bunked out in my parents’ basement, living with them way out in the country, not doing much of anything, not seeing much of anyone. I was about to enter the second year of my graduate programme when, following my doctor’s orders, I tried to get off the Paxil cold turkey in early July, and my life hasn’t been mine since.

The stuff that I study in university takes some heavy duty brain power, and I knew that I’d never be able to perform at the expected level, so I managed to get a leave of absence from my programme for this year. If I hadn’t been granted a leave of absence, by now I would have failed out of the programme, without a doubt.

All I meant to get at here is how amazed I am that anyone can live a normal life while going through Paxil withdrawal and post-Paxil withdrawal. As well as I’ve been able to keep it together, I don’t think I’d be able to do it if my parents weren’t letting me live with them rent-free and if I hadn’t gotten the leave of absence from my programme.

I give a tip of the hat to anyone who has managed to live a relatively normal life while going through all this. I don’t know how you do it.

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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Everyone is Different

Wednesday, December 6th, 2000 (continued).

Someone said:

“Do you think how one gets off Paxil depends on why one went on it in the first place? Like if someone went on it for bad depression as opposed to someone (like me) who went on it for other reasons than depression? Maybe that is why it was easier for me to get off it?”

You’re probably right. The longer you were taking it probably makes it harder to get off it too.

Also, I’m not sure about this one, but anyone who manages to wean themselves off the Paxil slowly is, perhaps, less likely to have a rough ride — as opposed to someone who found out the hard way by trying to get off Paxil cold turkey and ended up having go back on it and start all over again.

I followed my doctor’s orders and stopped taking the Paxil cold turkey and went through a week of pure hell. I think that experience was such a shock to my brain and my neurochemistry that my nervous system has never fully recovered and, subsequently, the weaning process has been more harsh for me than it would have otherwise been.
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Losing It (Day 100)

Friday, December 15th, 2000 (45th day off Paxil).

Dave wrote:

My emotions are all over the place. I keep bursting into tears very suddenly and out of the blue. Also, in the evenings/nights the last few days I have had really frightening feelings that I’m going to suddenly do something really awful and will just lose control. I feel like something inside me that usually inhibits these actions has come undone and is in danger of activating. It’s really scary.

Has anyone else felt this? It’s not a feeling of wanting it all to end — it’s a feeling that it just suddenly will with some rash action. This is very hard to write — probably to read to. Please reply if you’ve felt the same. I just want to hear there are others going through the same thing — please don’t write and tell how SSRIs are thought to induce suicide — I can’t handle that.

My response:

I know the feeling. You don’t have to describe it to me, and I don’t feel like elaborating on it. I know it too well to want to think about it too much. Since my first attempt at cold turkey withdrawal, I have experienced what you’re describing more than once (the last time I experienced it was about five days ago). I’ve experienced it at various times during my withdrawal and in many variations, but it’s all basically the same thing. It’s extremely difficult and scary to describe, but it’s like a knowledge that I could die now; a human being can only take so much, then something’s gotta give. But that doesn’t even come close to it.

Anyhow, I have lived through it, and continue to do so, because I’m able to avoid things that could set me off.

How I’ve managed to live through these moments, I don’t know. Recently, I even wrote a suicide note. Then I spent an hour or so polishing it up. And so I wrote a note instead of jumping off a bridge. By the time I finished polishing up the note, I’d managed to live through it, and although I wasn’t feeling too hot, I was no longer in danger. It’s the scariest thing I’ve ever had to face. And maybe I survived it by not facing it, by doing something else. Or maybe by actually facing it through writing and saying, “You won’t get me, you motherf**ker!” I don’t really know, and I’m not sure I can talk about it because it’s still very fresh in my mind.

But I’ve survived it and done most of it alone. There are times when I don’t want to talk to anyone, and don’t. I know when I have to be careful. That’s probably what got me through it, a knowledge that, “I have to be careful now.” And I run from everything — probably not the best thing to do (social isolation is usually not a good thing), but when even the slightest thing can set me off, can push my buttons in the wrong way, I make sure not to bump into anything or anyone who could push me more over the line.

Don’t push yourself. Know that now may be a time to be careful. Very careful.

None of this is probably any comfort to you, but what I can I tell you? I’ve been feeling extremely worn down lately and I don’t have as much to give as I used to. But I’m still alive.

Fall head-first into the agony of it. Live through it. Whatever it takes. Maybe that’s what I did. Maybe you can do it too. The main thing is don’t kill yourself. It isn’t you, remember; it’s the damn Paxil withdrawal.

Simple Pleasures

Tuesday, December 19th, 2000 (49th day off Paxil).

Scott said:

“I was driving into work through the most beautiful countryside this morning and remembering something someone said about how the colours are so much more vibrant when you are off the Paxil, and I was thinking about the fact that nothing has really touched me since I went on the Paxil, and that I don’t feel like I’ve really experienced things deeply — colours or smells or joy or excitement.”

This is something I can relate to. It’s something I’ve noticed even more since I began weaning myself off the Paxil, which completely messed with my normal capacity to appreciate the world around me. Over the years I’ve developed an appreciation and a connection to simple things, uncomplicated things. Things which are diminished by words: sunshine, gut-driven laughter, a compassionate touch, a genuine smile, a cool breeze that can lift you out of the weight of your days, poetry. All that good stuff.

I can remember the last time I had a moment like this. It was somewhere between the hell of my cold turkey withdrawal and the beginning of my weaning off the Paxil. I was on shaky ground, but I remember taking a walk behind our house in the woods with my father’s dog. I was walking past a crab apple tree in our backyard just at the edge of the woods when I heard a thump. It didn’t make me jump ten feet in the air like it would later on in the withdrawal.

I turned slowly and looked around, trying to figure out what had made the sound. I was standing there looking at this crab apple tree, a crab apple tree that was weighed down with these huge red and yellow apples. Then I knew it: One of those big apples had fallen out of the tree and thumped against the ground. That was the sound. And just as I was thinking that, another apple fell free, and I smiled.

It was one of those moments that wouldn’t have happened had I been three footsteps further down the path when the first apple fell. The whole thing probably took less than a minute to be over and done with, but I can still remember the joy of being able to appreciate that moment, the calm and the quiet of it all. Reading this you may not have any idea what I’m talking about it. But it was a moment of deep of appreciation, of being glad to be alive.

That sort of appreciation requires a certain kind of willingness, a certain kind of calm that allows a moment like that to happen in the first place. And since I’ve been living in Paxil Hell, I haven’t lived a single second like that. Believe me, I have wanted to die.

But there is a happy ending to this (I think). But I’ll tell you about that in a day or two. I’m not ready yet.

Life After Paxil

Monday, May 14th, 2001.

Alice wrote:

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

My response:

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

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

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

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