Paxil Free

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.

March 26th, 2001. (Basic Facts - continued)

I wasn’t going to list this one and the next one because they seem so obvious, but I might as well cover all the bases here.

Headaches? Yes. Bad headaches? Yes. Really bad headaches? Yes. Headaches go along with everything I’ve listed here. There’s no way around not having headaches. The body aches became particularly painful after my withdrawal. Some people don’t get this and some people do. I did. As I write this (on March 26th, 2001), I still have the body aches to a degree. For instance, I have to wear deep-soled slippers around the house now because I have become painfully sensitive to the vibration of my heels hitting the ground as I walk; it leaves me feeling a dull ache throughout my entire body that I’ve had to take a special pain medication for (regular pain relievers were useless). It hasn’t been easy (sometimes it’s like living in the Twilight Zone), but it’s slowly getting better with time.

P.S. (Sept. 2006): The headaches, body aches, fatigue and sleep disturbances that go along with Paxil withdrawal seem similar to those of fibromyalgia (FM). The cause of FM accorrding to the National [US] Fibromyalgia Association:

Most researchers agree that FM is a disorder of central processing with neuroendocrine / neurotransmitter dysregulation. The FM patient experiences pain amplification due to abnormal sensory processing in the central nervous system. An increasing number of scientific studies now show multiple physiological abnormalities in the FM patient, including… low levels of blood flow to the thalamus region of the brain… [and] low levels of serotonin and tryptophan…

The muscle pain I experienced during my withdrawal didn’t go away until about 2002, and even today I still feel a residual stiffness in my back and neck. I tried yoga but didn’t maintain the practice. I probably should have stuck with it.

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.

Current readers of this blog are welcomed to comment as much as they like. However, I don’t have the time to moderate comments, so they’ll be sent to my email account where I may eventually incorporate them into the blog anonymously. I’m still not comfortable giving advice, so I doubt very much I’ll respond to any comments. (I’d go to paxilprogress.org if you have any questions about Paxil withdrawal.)

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

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 paxilprogress.org 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.
Read more

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.

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.)

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.
Read more

Wednesday, September 20th, 2000.

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 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.
Read more

Tuesday, September 25th, 2000 (continued). In response to a post at paxilprogress.org:

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.
Read more

Tuesday, September 25th, 2000.

Well, today it my 20th day of weaning of Paxil. I am now down to 10mg, alternating with 15mg for three days (today happens to be a 10mg day), and for whatever reason, I’m feeling okay. I occasionally have a mild tension around my head, but no headaches, no feeling like the brain zaps are just around the corner, hardly anything.

Easily for the past three days I’ve been walking around holding on to the walls, grabbing onto something every time I stood up, not making any sudden movements (especially with my eyes), avoiding loud noises, being extremely careful walking up and down stairs, and absolutely not driving the car.

Then around 10 o’clock last night as I’m watching the Olympics, I start getting tired, and as I do my head clears up and I don’t have any symptoms for the rest of the night.

Then when I woke up this morning, my head was still clear — but seeing how everything usually kicks in about an hour after I get up, I wasn’t very hopeful.

But, to my surprise, I’ve been okay all day. I was not expecting to feel like this today. I picked up a Xanax prescription from my doctor today to help “take the edge off” if the withdrawal got any worse — and worse is definitely what I was expecting — but so far so good.

Tomorrow may be completely different, but what I’m experiencing now is definitely a surprise. I’m still moving slowly and cautiously, but I almost feel like I don’t really need to.

Go figure. Who’d expect to have a good day when they get down to 10mg? Not me.

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:
Read more

Tuesday, October 17th, 2000.

Angela wrote (on paxil progress.org/forums):

It has been three weeks since I have been off of Paxil. I’m terrified.

Every now and then I feel some withdrawal symptoms, nausea, severe headaches and total lack of focus and concentration. But what scares me most is the way my mind is working.

I have been so angry lately, I lash out at my friends, I already lost one, and almost lost my best friend because of the horrible things I was saying. I just spoke to my boyfriend, and hung up feeling terrible, because I keep having mood swings. One second I want to hurt someone, I want to punch, kick scream, anything — the next, I am sorry for feeling this way, and sorry for acting the way I do. Is this a result of a chemical imbalance created by the Paxil? Wow. I wonder if the chemistry of my brain is going to remain in this “schizophrenic” trance.

While I am no longer feeling depressed, I feel trapped. Like I’m in a jail, and I want to break through the walls that surround me. I want to kill myself because I am afraid of what I might do, who I might hurt, that I am a truly horrible person and that I do not deserve to live. I don’t know what to do, or think, or say.

Susan wrote:

My advice is not to be alone too much, and not to let your thoughts dwell on dying. You are not a terrible person — keep reminding yourself what you are going through, that it’s the Paxil withdrawal, not you.

I haven’t quit yet — I just lowered my dose from 10mg to 5mg every other day. About a month ago, I lowered my dose to 10mg and I noticed the ANGER more than anything. I don’t think I have any more anger inside me than the average person, and possibly less, but I felt furious for about a week or two. And I noticed that the worst seemed to be that time before my period. (The Paxil may have been buffering my emotions during that time.)

My boyfriend was over one evening, not feeling well himself, and said something that I normally could have handled, and I slammed the door behind him when he left. We tried to talk a few days later, but it didn’t go well — then we didn’t talk for nearly two weeks, but are now back on track.

My point is, I’m sure the change in my neurochemistry had a lot to do with it. I was so upset one evening, I got into the word processor on my computer and wrote down, “I am angry…” and then a list of all I was angry about. I came up with 23 things, and intended to come back to it. And a lot of the things were not concrete things that had been done or said, but my perceptions about what others thought about me, and the INJUSTICE of it all! I really felt vulnerable. (I am a little nervous about this upcoming week of my cycle.)

Please be kind to yourself, even if you are having a hard time feeling kindly towards others right now. If you had a daughter and she were experiencing what you are experiencing, how would you want her to think about herself? Try to be a kind parent to yourself. Take care.

My response:

Experiencing irritability problems? Kind of feeling like killing someone else or killing yourself? At this moment in time, I think I can relate…

The number one thing to do right now is not kill yourself. I’ve been weaning myself off Paxil for 41 days now (I’m almost down to 5mg), and that’s 41 days of my life not being mine. I’ve been smiling patiently the whole time, but I am so sick of it that I am ready blow, I am ready to lash out, and I have days where it seems that the most reasonable thing to do would be to kill myself. The clarity of this thought when it’s there is — how do I describe it? Talk about a mind trip. The only thing that keeps me going is the knowledge that everything I’m experiencing is being caused by the Paxil withdrawal, and that eventually the withdrawal itself will withdraw. I don’t know when, but for now I know that what I’m feeling isn’t my fault, and that I’m not crazy.

At the same time, while I know that I’ll be enduring this for some time to come (and I hate it that my life isn’t mine while this is happening, that I can’t even begin to live my life the way want to while this junk is making me into a zombie) — at the same time I know what I have to look forward to (it’s going to get worse before it gets better). On top of the frustration I naturally feel from having my life made unproductive, uncreative and useless by this wonderful little pill, I’m beginning to experience the irritability that comes from withdrawal — and it’s the kind of irritability where I don’t even want to look at some people, I don’t want them to look at me, I don’t want to listen to them open their mouth and say something stupid that I don’t have the energy for. I have become one big ball of sunshine. I have moments where I feel I could grab some people by the head and break their neck, or just punch them in the face and knock them unconscious so I won’t have to deal with them.

Kinda scary, isn’t it? Everybody thinks I’m handling this situation with ease. They don’t know the half of it. If it’s disturbing to read what I’m saying here, it’s a hell of a lot more disturbing being the one living it, believe me.

Right now I would like to live in a log cabin in the woods and be left alone. Not so that I can go off by myself and blow my brains out, but because I know that the more people I have to deal with everyday (especially stupid people, as well meaning as they may be), the more likely I am to punch somebody in the face or tell them to f*** off…

Well aware that this is where I am right now, I do everything I can to avoid people. This isn’t anti-social; at the moment it’s just a matter of survival. I would like to lock myself away until the worst of this is over with. Goddam Paxil.

But the point is, you’re not alone with the mood swings, with the extreme surges of anger, etc. — and after everything you’ve been through because of our little friend, Paxil, who the hell wouldn’t be? I’m ready to commit violence on some people because they have no idea how debilitating this experience has been — they have no idea what a challenge it has been for me to maintain my civility throughout all this.

I haven’t lost any friends yet, mainly because I’m staying clear of everyone as much as possible. I think most of us going through this have experienced some kind of personal loss due to the Paxil withdrawal. That’s doesn’t include the loss of the quality of our lives while we’re being put through this shit, the loss of our living. Regardless of the physiological effects of Paxil withdrawal (which are extremely unpleasant and often debilitating), the psychological effects aren’t exactly a walk in the park either. Let’s not forget this.

My own personal prediction of how my withdrawal will go is that all the feelings I would have normally experienced while I was taking the Paxil but were numbed out by the Paxil — every single one of them is going to come back with a vengeance. It doesn’t mean a relapse into a depression or anxiety; it means that all the feelings that the Paxil didn’t allow me to feel are going to be felt now. So regardless of the physical symptoms of withdrawal, of living without Paxil, the psychological experience itself will be a motherload. When I get off the Paxil, I don’t expect to bounce back to my good old self right away. It’s going to take time. That’s just a theory, my own speculations based on my previous experience of cold turkey withdrawal.

This Paxil withdrawal experience has affected everything in my life since it first happened in early July. I’ve been living a useless life ever since. That’s how it feels anyway. And now that I’m almost down to 5mg, I’ve got the mood swings, the sudden burst of anger, irritability on a level which is off the scale, insomnia, occasional suicidal feelings, dizziness, gastric disturbances (to put it kindly) — the works. The only thing that keeps me going right now is that I know it isn’t going to last. I don’t know how long it will last, but I know it will pass as long as I do everything in the meantime to keep myself healthy (vitamin supplements, exercise, staying away from annoying stupid people, etc.).

The other thing I’ve had to do recently is to tell the people who know that I’m going through withdrawal that I have reached the stage where I am extremely irritable and that they shouldn’t take my unfriendliness personally, and that the best thing they can do is to not push themselves on me. It other words, I’ve politely told them to get out of my face. While I’m going through the irritability stage, something as simple as that has made a difference.

First response:

Reading your message is like reliving my own nightmare. You have so very eloquently expressed feelings what I and many others have had as we journeyed through our withdrawals. I still have a lot of anger over the experience, but in our society you’ve got to be careful who you express those feelings to! You’ve done so much for us on this board in letting us know that our experiences weren’t out of the ordinary or unique — unless you’ve taken Paxil.

THANK YOU for sharing. It really means a lot to me to know that others have felt similar emotions.

Second response:

Thanks for being so candid and sharing your story. I’m gonna risk getting my neck broken here, but the rush of emotions that you will feel again when you complete withdrawal may not be as bad as you’re expecting. I’ve been reading posts here since July 2nd, and I’ve never read any that make it sound hard to deal with. On the contrary, most have said that it felt great to be able to cry again, etc. Tapering can be rough and the days after your final dose may be rough, but at that point, you know that the end is in sight. Your anger should subside. Hang in there, you’re probably in the worst of it right now. When you’re out of this, I hope you can spread the word about what Paxil did to you and prevent others from suffering. I sure have sympathy for you. Let us know how you’re doing.

Third response:

Thank you for your post. I felt myself choking up reading it and reliving the experiences you have described.

I, too, have been down that road. I have never been prone to angry outbursts, so it was really hard for me. I have felt so much shame for acting the way I have toward family (strangely I didn’t feel anger toward others). Many times they would just look at me “stunned” at what they were hearing come from little ole docile me! My rage was mostly ranting and raving. Thank God I didn’t feel suicidal or want to physically hurt anyone. My words were bad enough and I am sure they caused pain to others.

I have been off Paxil for 6 weeks after taking it for 6 years and can tell you that it will get better. My anger lasted for 2 weeks past my last pill and then went away. Some days it wasn’t too bad and others… well… let’s just say I wasn’t too much fun to be around.

I started taking St. Johns Wort about 3 weeks after my last Paxil and just quit taking it a week ago. I have been going through the anger period again just in the last week. I really think and hope it is from discontinuing St. Johns Wort. I am hopeful that I will get past this last bump too.

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

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

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

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

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

This is a serious impairment on my brain function.

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

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

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

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

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

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

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

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

Friday, December 22nd, 2000 (52nd day off Paxil).

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

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

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

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

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

Tuesday, January 2nd, 2001 (63rd day off Paxil). A message about my Paxil progress:

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

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

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

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

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

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

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

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

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

First response:

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

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

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

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

Sunday, January 21st, 2001 (82nd day off Paxil). Email to a friend:

I’m beginning to think of my future now. I still have a hypersensitivity to light and sound — the slightest unanticipated sound, like the house creaking or even the sound of someone clipping their nails, makes me jump about 20 feet in the air — and in the run of my day, this is what takes up most of my energy. But I’m not waiting around for it to get better. Whatever kind of work I eventually find will have to be tolerable to these remaining withdrawal symptoms. I get bad headaches and my bones ache when I walk around too much, but I’m basically at the point now where I’m ready to move on. I am far from 100%, but as long as I take it slow and carefully, I think have a chance of eventually making a full recovery.

May 16th, 2001.

Thinking the worst was over, I began looking for work on February 16th, 2001, about three months after I got off Paxil. I began to take what I thought were the first steps towards living my life again. I still had a hypersensitivity to light and sound, but it didn’t seem to kick in until much later on in the day, usually somewhere between 7 and 8pm, which was manageable to me and which seemed to indicate the withdrawal effects were gradually working themselves out of my system.

Psychologically, the transition was more difficult than I thought it would be. Just being around people again in a normal social environment took some getting used to. I found myself feeling apprehensive, hesitant and less spontaneous than I was used to being. But after seven months of social isolation, I suppose this was understandable. Socially, I was feeling a little rusty, but I was confident that I’d be all right as soon as I could find a job, get into a routine and develop a normal structure of social relationships again, all that good stuff. I’d been in starting-from-scratch situations before and, although I had my down days, I knew I could get through it if I kept pushing myself.

The social adjustment wasn’t easy. Things were made even more difficult when I began having bad headaches after the first week. I now understand what people mean when they refer to a “pounding headache.” It was as if I could feel my heart pounding — but inside my head; it was a pulsating pain. I took every kind of headache pill to fight off the headaches, but nothing worked. As the headaches continued, the hypersensitivity began to set in earlier during the day until I was eventually hypersensitive all the time, twenty-four hours a day.

It was a sinking realization the day I said to myself, “It’s still not over.” The withdrawal seizures were over and done with, but my life still wasn’t mine. I was determined not to let this experience take away any more of my life, and so I tried to jump back on the horse the first chance I had. But that determination may have gotten the better of me.

I can’t say for certain, but I probably shouldn’t have pushed so hard so soon after my withdrawal. My body, physiologically, neurologically, was still in recovery and in need of healing. I don’t know what the hell I should have done (sitting around on my ass out in the country by myself was driving me crazy), but I probably should have given myself another month to take it easy, to give myself more time to heal instead of throwing myself into a situation that was more stressful than I anticipated. It’s as if I was trying to will my life back, but my body wouldn’t let me. Mind over matter, my ass.

The headaches and the hypersensitivity got so bad that I could barely function. Trying to put on a pleasant face during an interview or any kind of social interaction was — well, it wasn’t working. I couldn’t fake it. I was so physically miserable that my spirit couldn’t fight it anymore. And after a month or so of trying to walk it off, I had to give in to the damn withdrawal again. At this point I may have wanted to blow my brains out. I wasn’t exactly taking track and was having a hard time really giving a damn about anything anymore.

That was about two months ago as I write this. I’m taking a small dose of Xanax to help with the headaches, and although I can still feel a pounding in my head, it’s not killing me like it was before, and my hypersensitivity is gone. (But I don’t know how long I want to keep taking these pills.)

In the opening to her novel, Ordinary People, Judith Guest writes that to have a reason to get up in the morning, it is necessary to possess a guiding principle, a belief of some kind; even a bumper sticker will do. But I don’t know what the hell keeps me going anymore. I don’t know what my next move is. I’m still waiting around for the withdrawal to work itself out of my system, I guess.

I’m not so sure how high my confidence is flying right now, or even if it’s confidence that I’m lacking. Which leads me to a question of faith (not religion). This is a big one.

I’ll leave my final thoughts on that, though, for when we get to the end of this blog. Until then, what follows is a sample of how my post-withdrawal experience played itself out between February and July 2001. (July 2001 would be a year since my initial withdrawal experience.)

Wednesday, April 25th, 2001.

It’s been about five months since I took my last bit of Paxil, and right now the main thing I’m still feeling is difficult to describe, but it feels like my head is full of concrete — and concrete that hasn’t set yet.

Don’t give me that look. I know how strange that sounds, but try describing any of this Paxil-related stuff to anyone and chances are they’re going look at you like you’re a nut and you’ll never hear from them again.

Anyhow, this unsettled concrete head feeling. I’m taking a heavy duty muscle relaxant to fight it off, and it’s working. I don’t have headaches nor any of the hypersensitivity I used to have. Which is good. But my head, or the inside of my head, still feels a bit twitchy (I can’t find the language to describe it).

Then I notice that my muscles are stiff. For instance, whenever I do any kind of stretches, my muscles don’t stretch — they crack. Every single muscle in my body is like this, including my neck muscles and my head muscles.

So naturally I’ve come to the conclusion that I am really tense, but I don’t want to keep relying on medication to loosen myself up. First of all because it doesn’t loosen me up that much anyway, and secondly, I don’t want to get addicted to tranquilizers and then go through another withdrawal experience.

Anyone have any non-medical suggestions to easing this tension, something I can physically do that helps release tension? Man am I tense. I’m thinking about signing up for yoga.

First response:

Just wanted to let you know two things: Firstly, that my muscles and joints are cracking all the time now (for the past few months), and this is definitely new and Paxil-related. I never suffered from social anxiety, so I know its no “relapse.” Secondly, I just wanted to contribute a new metaphor for the unset concrete in your (and my) head. I’ve likened it to Jell-O pudding — just as an add-on to the mushy brain metaphor.

Also, I think yoga is a great idea. When I started it in September to help deal with all this, it was so good for me. I love it because it’s the only exercise you can do on your own at home with only a small space, as well as with your eyes closed. And of course, yoga will help those joints. But just as a warning, it will take a while to notice a difference.

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.
Read more

May 29th and July 26th, 2001.

I want to talk about the common thread which I think is apparent in the experiences of everyone who has been through paroxetine withdrawal; and, in big bold letters, that common thread is THE FEELING OF BEING CUT OFF FROM THE WORLD. Often it’s not just a feeling; it’s a reality. There are plenty of other crappy things I could single out, things others may consider more important issues, but for me, this is the big one because I’m still working on it; it’s the one which I think causes the most damage and requires the most healing.

Oliver Sacks addresses this in his book, Awakenings (1990 edition), when he describes how a disease can consume a person’s life, consume all of their energy and attention for such a long period of time that (from page 240): “they feel, on the one hand, cut-off or withdrawn from the world, on the other hand immersed, or engrossed, in their illness,” a feeling which I’m sure anyone living with paroxetine withdrawal can relate to. Then he goes on to speak about the ‘awakening,’ or the recovery, in which one ceases to feel the presence of the dis-ease, but is instead naturally drawn towards and engaged by the presence of everything in the living world around them.

It’s been just over a year since my initial withdrawal experience and I wish I could say that I no longer feel the presence of this disease, but I can’t. (Paroxetine withdrawal, and post-withdrawal, is a dis-ease. I’d love to meet someone going through withdrawal who’s sitting back at ease with all of it.) It is less present than it used to be for me, but, along with other symptoms which I am too sick and tired of to describe in detail, I have chronic pain (as in all the time) which disrupts the relaxed flow of my thoughts and feelings and kind of takes the fun out of things; it gets to me at times. It is this cognitive disruption, one which seems physiological in origin, that interferes with my fully feeling the presence of the world around me like I used to, of my fully being able to be myself. I’ve been trying to “walk it off” all this time, but I can’t.

Throughout my Paxil Experience I’ve had people full of good intentions pass on to me the age-old advice, “Don’t dwell on what’s happening to you. Just go outside and enjoy the sunshine and the simple things. You’ll feel a whole lot better.” That’s a simple solution that works, and I know it works because I’ve lived by it for many years — but it works for people who have their health, not for someone who feels like they’ve been hit in the head with an aluminum bat from the withdrawal seizures and the constant headaches and body aches. Let’s crack one of these good-intentioned people across the head with a two-by-four and then tell them not to focus on the pain (impossible); tell them to go out for a leisurely walk while their head is pulsing with pain and enjoy the sunshine which will surely make them feel so much better. Maybe then they’ll realize how misplaced and absurd some of that age-old wisdom can be, especially when it comes from people who don’t have the experience to back it up.
Read more