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.

And that’s what I’ve been dealing with since February. Although I will never take Paxil or anything like it again, I had to give in and take a heavy-duty muscle relaxant to help with my present condition. I don’t have headaches or hypersensitivity to light and sound anymore, but neither do I feel like a normal human being. It kind of gets to you after a while (my first withdrawal experience was last July).

For the past week I’ve been trying out some breathing and muscle-stretching exercises, even some meditation sort of stuff, and it seems to help although I’m not too good yet at sticking to it. I hate resorting to this sort of thing. It goes against the whole grain of my personality. Waking up every morning and meditating before I start my day? Give me a break. No offense to anyone who meditates, but it’s just never been my kind of thing.

But this is what it’s come down to for me. If I want to get on with my life, and get on with a good life, I have to change the way I live. No more bacon and eggs every morning for breakfast. Now it’s yogurt and a piece of fruit. That kind of crap. I feel like a schmuck. But that’s just my tough luck. I have to learn to eat healthier, live healthier (no booze, no cigarettes, no “recreational” drugs, no caffeine) — all that jazz. Next thing you know I’ll be wearing tie-dye shirts and playing “hacky-sack.”

So I have extreme muscle tension instead of “social anxiety.” Or maybe I have both. But whatever it is, it’s probably my body’s way of saying, “You can’t keep living the way you have.” And I know it’s the truth.

And I have never felt more lost than I do now. I don’t know what the hell I’m doing, what the hell I can do, or what the hell I’m going to do next. It’s like someone who’s been writing on a typewriter their whole life and then given no choice but to learn how to use the latest version of WordPerfect or MS-Word. Go under “File” and select “Save As” and all that crap. I just want to write! You know what I’m saying?

But to bang home again what I’m saying here, whether it’s post withdrawal anxiety or muscle tension — or migraine headaches, digestive problems, chronic fatigue, fibromyalgia, eczema, sleep disturbances, asthma, muscle spasms or any of the other stress-related ailments — I think the message is loud and clear: “You can’t keep living the way you have.”

The solution is not as simple as taking a little pill. It’s a new lifestyle. I have to pay closer attention to my needs. I have to take better care of myself now, and that requires a willingness, a commitment really, to change. And when you’re 31 years old and used to living a certain lifestyle that has worked well for you for many years, it’s like trying to learn a new language. That’s the closest thing to a theory I got going right now.

First response:

Thank you so much for writing down your experience. I’ve been completely off Paxil for a year, having withdrawn slowly. I started to feel the effects over a year ago and I’m still going through withdrawal. I was on 40mg for a year, so I don’t know how long it’s going to take, but I think we all have that familiar refrain running through our heads of: “I just want my life back.”

I was also thrilled to read your earlier description of how time seems to expand and contract as this stuff goes on in our bodies — that’s something I was talking about with my doctor and with my family… and it’s not really understood. It’s got to do with disassociation. And thank you also for making the connection with epilepsy — I’ve always thought it was me creating metaphors trying to understand a body going through war, but it may be more literal than I thought…

I am lucky to have a supportive family, but I still hold them to such high standards. We need to let go of expectations and just accept the love they are capable of. And my doctor, well, he initially thought the withdrawal was a depressive relapse, and now that a psycho-pharmacologist acknowledged — in what felt like a really blasé manner — that what I was going through was withdrawal and not relapse, my doctor is now telling me to stop focussing on it and start focussing on living. He worries that by writing and reading the postings on the Paxil withdrawal message boards that I am wallowing. I know better.

Thanks again for your site and your story!

Second response:

Thank you for telling your story.

I am a professional writer, but have been in the lion’s mouth too deeply to write as you have. To read your story pierced me with its awful familiarity, and gave me courage. Most of all, reading your words helped me not feel so insanely alone. You have made a friend in me, and although you may not know it, I am sending you the good thoughts of one who is struggling for some kind of faith in this Paxil purgatory.

Basically, we are more or less “contemporaries” in our Paxil experience. I am just short of one month off the poison. I started taking Paxil in February 1999, and it bruised me from the start. I went through my first withdrawal in August/September 1999, but since my shrink had said nothing about problems I might encounter, I thought it was a nervous breakdown. I then tried to taper last summer which was aborted and then another doctor ramped me up to 45mg.

This January 1st I began a slow tape. I’m now using Trazodone, Valium, and Xanax to manage the “fresh hell” which greets me each day.

Your story touched me to the core. I admire your strength in even being able to write your story. Also, I think you’re a damn good writer.

I have a brave knight of a husband, and several stalwart friends, not to mention a fine psychiatric nurse, all of whom have helped hold me up. But I have no one in my life who has experienced this GlaxoSmithKline hell; finding your site has been a real comfort. Your understanding that suffering can have meaning, and that one can not only survive, but live to tell the tale brings me to a better place. I could quote from your writing here, but I think you get the picture. Thank you.

My response:

I appreciate everything both of you had to say. I think it’s fair to say that I can relate to everything you shared in your messages about your withdrawal experience, and it’s always good to hear from other people who know what I’m talking about. I’ve been Paxil free since mid-November, and even though I’m am gradually getting better, I can still physically feel it in my head and my body that I’ve been through a major neurological and physiological trauma.

Trying to describe some of the post-withdrawal effects to people who haven’t experienced it — well, I just don’t do that anymore, because I don’t need people looking at me like I’m nuts. And I’m not sure if I blame them; it is so difficult to find the language to describe what this stuff is like that even our trusted medical professionals think we’re nuts when we give it a try.

Anyhow, we’re not nuts, and I’m glad you were able to relate to what I wrote on this blog. That’s the reason it’s here.

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.

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.

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.

I was given Paxil because of post-traumatic stress that I experienced last year after, well, a traumatic event. But even before that, although I’d never taken an antidepressant until Paxil, I used to have periods of mild depression, and I’ve had them all my life. Perhaps that indicates some slight chemical imbalance, or maybe it’s just a part of the personality I have, which is that I have a tendency to think about things way too deeply.

I may not have the most normal or average personality profile, so maybe there is something a little bit out of whack, neurochemically speaking. But I think this slight out-of-whackness may account for my having the personality that I have (and I wouldn’t want to be anyone else). And it’s these little details, these quirks of personality, which I think may influence how someone reacts to getting off Paxil — and which are completely overlooked in the generalizations that are proliferated in the current medical literature.

Some people may be slightly predisposed to having a rough ride getting off Paxil.

And then there are people who have had chronic depression or severe depression (the two are not necessarily the same), an obsessive-compulsive disorder, or some other psychological or social disorder their whole lives, and who have probably taken other antidepressants before Paxil came along and will probably continue to take antidepressants their whole life. If anyone is going to have a hard time getting off Paxil, I would think this group must be at the top of the list. But I don’t know.

I think what a person was prescribed the Paxil for probably does plays a part in how well they’re able to get off it. And a lot can be explained by that. But there are other factors.

Personally, I have always had a low tolerance to any kind of drug. For instance, although I don’t drink caffeine or alcohol anymore, I can get pretty close to drunk off two beers. Whenever I found myself in a situation where someone passed me a joint, one drag and I’d be complete toast. Half a cup of coffee and I am zooming. I have always been like this.

So when someone with this kind of metabolism throws Paxil into their system — it’s no wonder it’s ruined my life. It’s no wonder that stopping Paxil cold turkey (imagine that, going cold turkey!) nearly killed me. The post-traumatic stress I was experiencing just before I started taking the Paxil was dealt with very effectively through communicative therapy, and nothing of that experience is an issue for me anymore. The continuing trauma of the Paxil withdrawal — now that’s another story altogether. I think I could have had a relatively smooth ride, but my doctor’s advice to stop taking the Paxil cold turkey was the wrong advice, and I wish to hell I hadn’t listened to him.

That’s my rambling take on why I have had a rough ride. I think it could have been avoided. But like you said, some people will inevitably have a rougher go at it. It is so important for people to be as well informed as they can be about this junk. When I initially took Paxil, and when I followed my doctor’s advice to go off it cold turkey, the principle of informed consent was completely ignored.

Hence, I have this overwhelming desire to sue GlaxoSmithKline for deliberately misinforming and not informing doctors and their patients of the withdrawal effects of Paxil. What can I tell you? I’m human.

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.

First response:

I am so excited that I can hear from people who are having similar experiences. Five days ago I decided to quit taking 20mg of Paxil. I did minimal weaning, but I had no medical guidance because I have been stealing Paxil from my mother. Anyway, I attend a prestigious university which is very demanding and I cannot, in no way, get any studying done. I’ve only been taking the drug for about four months and after feeling like an emotional zombie, decided I had enough.

However, these tremors and vertigo accompanied with fits of crying is making me nuts. My roommates and supposedly closest friends have no idea how bad this feels. All I wanted was someone to talk to who could relate to my experience at school and they instead turn their heads and go out for a night on the town. They are mad at me for taking the Paxil without a prescription, but where were they a year ago when I sank into my interminable depression? Where were they when they could have stood up for me in my terrible circumstance?

Thus, I’ve come home (thankfully close to school) and I’ve been bedridden for about three days. My parents think I’m lazy and I lash out at them with a newly acquired temper. No one understands! When are the symptoms going to end, and is this paranoia a result of the withdrawal or is there truth in my perceptions? I don’t know. I’m just rambling to pass time during these periods of insomnia.

Second response:

Yes! I remember that the one and only suicidal thought in my life happened after I accidentally went cold turkey off the Paxil. It is right back there as a faint memory but a very unpleasant one. I was at the sink washing some dishes and it felt like my brain was swelling and then the thought that I should get a gun and shoot myself in the head came and it wouldn’t go away, and then I began fighting with myself, wondering what was real and what wasn’t. That is the day I ran to the drugstore and got a refill on my Paxil only because I couldn’t really figure what else it was from.

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.

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.

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.

They have definitely proved that it is addictive, and it is like Dr. Breggins says,”You don’t know what these types of drugs are doing to your brain,” and it does not look very promising.

To this day, I still think Paxil affects me. After I went through withdrawal from Paxil, and I mean the withdrawal from hell, I felt quite good, but as time went on, I starting feeling weird, and different, like the problems associated with Paxil are forever here to stay.

I could say maybe I just need a little bit longer, but to be quite honest, I’m not convinced that Paxil did not do anything to my brain. I do believe it at least partially destroyed the serotonin site of the brain. I really think I lost the ability to release the serotonin I need, which plays a big part in your emotions.

The things I could tell you about Paxil would blow your mind. This drug is not magical. It is really a destructive drug! I would tell everybody not to take it, and of course I have studied so much about it, that now people are starting to ask me about the drug, and what problems it causes.

Paxil can get you to the point that you just can’t think right.

If only I could emphasize how bad it really was, I would do everything in my power to do so.

My doctor now, who took me off Paxil, knew the dangers of Paxil when it first came out, and I think it was 1992. He noticed a pattern among his clients that were taking Paxil, was not pleased with the results, and he stopped prescribing it. He tried to tell doctors, but they thought they knew it all.

Now though, since I came back, I got off Paxil successfully with my doctor’s help. Thank goodness for doctors who pay attention! My doctor has asked me to explain to other doctors, PhDs and counsellors with their Masters, about the dangers of Paxil, and why it should not be prescribed, and you would be amazed at what these so-called educated people don’t know. When I talk to them, I honestly have to explain what I mean, regarding Paxil. I was totally amazed! They have no idea of what Paxil can do.

Well, sorry about the long explanation, but yes, with Paxil, and after Paxil, I can get very angry. I am just not myself anymore.

In response, I wrote:

I can definitely relate to the anger situation. It didn’t kick in for me until I got down to around 5mg, but when it did I felt like I was about to kill anyone who tried to have a conversation with me. This lasted for about a week, and during that week I stayed away from people completely. Though most of that anger has passed, my tolerance for listening to certain opinions seems to be zero. I’m not as patient as I used to be.

I’ve been completely off the Paxil for about two weeks now (approximately two weeks; could be more, could be less; my sense of time is a bit out of whack). The closer I got to being completely off the Paxil, the more positive reactions I had. My sex drive (and endurance) suddenly reappeared — it was like I was in my teens again; intellectually I became more alive, reading and writing and with great bursts of energy; I began to feel more relaxed, more myself. All kinds of good stuff like that. I was still experiencing pretty bad withdrawal, but the moments of clarity were amazing and rejuvenating.

Since I’ve been off the Paxil completely, my withdrawal symptoms have not disappeared (digestive problems, sleeping problems, electrical sensations connected to my eyes, etc.), but they have gradually dissipated. I haven’t had a brain zap for two days now, although I am still a little wary of them.

I’ve heard other people talk about how they return to normal and feel ten times better once they get off the Paxil. I certainly had a few glimpses of that, but right now I wouldn’t say that’s how I’m feeling. Sex drive, intellectual vitality — all that stuff seems to have taken a back seat to what I’m going through now.

The last few weeks have been extremely emotional for me. And now, instead of experiencing some sort of rapture from having gotten through all this, if you asked me what I’m feeling, I would say I’m feeling nothing. The only thing I can think of is that I’m emotionally spent; I’m all used up, and I just don’t have the energy to feel emotional about anything. (Or maybe I’ve got one last motherload of anger and grief to let loose, and I just don’t want to be around for it.)

That, or I’m afraid to let myself feel… relaxed again. Like I can’t believe it’s over. It’s as if I’m afraid to let my guard down, to really let myself say, “It’s over.”

The other conclusion could be that I’m depressed again, but I don’t think so. I think I’ve been through a prolonged traumatic experience in trying to get off the Paxil, and even with the Paxil out of my system, psychologically, it’s left a mark on me. I’d like to say it hasn’t, but it has. I would like to jump up and down with joy, yelling out, “I made it!” But I can’t seem to let myself do that.

I’m not sure about any of this though.

I would like to hear from others who, even if your experience isn’t the same as mine, have gotten through this stage of withdrawal, or post-withdrawal…

Second response:

Boy, I couldn’t agree with you more. I know beyond the shadow of a doubt that I will never be the same after taking this drug. Thank you for telling it like it is. The more research I do, the more freaked out I get about what this shit may have done to my brain. Don’t expect GlaxoSmithKline to own up to any of this; after all, they’re the ones who said it was not addictive. I know one person who took Paxil shortly after it came out. She was a zombie while on it, and went completely ballistic trying to get off. Years later, I realized that this person had changed dramatically, and not for the better. Getting off this drug is only half the battle. The other half is reclaiming the lives we had before Paxil.

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…

…and I was down here in this bedroom lying on the bed with a knife to my throat, feeling the sharpness of the blade, knowing that I could very well, very efficiently, cut open my throat — I could feel my pulse through the blade — and that would be the end of it. I’d be done. I had tried and tried, and had loved and cared as much as I could, and I had come to a life that I didn’t want anymore. The desire was gone. I didn’t want to be witness to the things I’d been living with, to this depth of suffering and total loneliness. And I didn’t care what else there was, and what else there might be. I’d had enough and felt like I had good reason quit.

As it is, my body is still alive. As for the rest… I’m wondering if this feeling will ever leave me. Will I always know this? “Is this something I’ll have for the rest of my days?” Can I yell that one up to the skies? What is this knowledge doing to me? How am I going to live with this?

My notebook has been kicking around for a while now. I’ve been meaning to find a place for it. Cleaning up this bedroom, I nearly threw it out a few times. I’ve probably thrown away other things. Maybe it’s okay to hold on to death, to write about it like this, especially when it’s so personal. I don’t like the thought of this being true, but maybe this is all I have. Maybe this blog is me holding on to life. Here’s the unedited version of what I wrote on the side of the highway that day:

Suicide is almost a natural reaction to a trauma. In a physical trauma, such as a car accident, survivors often have no memory of the accident. The brain automatically blocks it out — it removes the trauma and the unpleasantness from your consciousness. Suicidal thoughts are the same thing, only your mind wants to block out your life, your entire living.

That’s the unrefined thought of it. There’s a lot I could add to it. And from where I’m standing, it seems to make a whole lot of sense. It doesn’t seem unreasonable at all. Pretty scary shit, ah?

P.S. (Sept. 2006): The day I had that knife to my throat was a day everything changed. I’ve never gotten over it. This is one crazy journal entry. It’s not difficult to see how close to the edge I was at the time — which was pretty much the whole time I was going through withdrawal. I’m amazed at how civilized I was during the whole thing. I was so close to the edge of my sanity, over the edge really, it’s a miracle I didn’t completely lose it and commit violence against myself or someone else. This might not make sense to most people, but under the extreme conditions of Paxil withdrawal, it seems insane NOT to go nuts and lose it. Who wouldn’t want to go nuts and let it all out? Many times I thought I would have been much better off if I’d simply had permission to say, “F**k being civilized! Put me in a sound-proof padded room and let me get it out of my system — now!” Except for places like paxilprogress.org, there is practically no outlet for the psychological trauma of Paxil withdrawal. Staying civilized in the midst of all that is a miracle. And I know the questions I asked sound crazy — What is this knowledge doing to me? How am I going to live with this? — but they’re still real. I’m not sure what kind of knowledge it is. A knowledge of my death. A knowledge that if I’m ever in that place again, in all likelihood I would kill myself. That knowledge scares the hell out of me, but maybe that’s a good sign. (I still sound crazy, don’t I? But trust me, you would too.)

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:

The night before last, I wrote a short letter to a friend of mine. It was a calm, quiet letter, short but well written. And here’s the thing: I felt good about it. Understand now that writing is the one activity I get more fulfillment from than any other. So even a short letter like this after two weeks of not being able to write a coherent word (Swiss Cheese Brain Syndrome I heard someone say) — it felt good. It was a small thing, but it felt like I’d actually done something. The first time in weeks I didn’t feel so useless.

The satisfaction from having done something with a bit of purpose seemed to lift my spirits in a subtle sort of way. I just… felt better.

Then I go to bed and this morning I wake up, and immediately before I even have breakfast or take my Paxil, I feel like writing about something. So I sit down and write about it… until lunch time. Normally, I’d be weak and fatigued from going this long without eating. But I sat there slowly writing without noticing the time or even if I was hungry. I’ve had to take a small dose of Xanax in the morning for the past week because of the withdrawal I’ve been experiencing. But this morning I didn’t have to (today’s the first day since I’ve had the Xanax that I haven’t had to take any).

So I woke up this morning and managed to do something which I found fulfilling. And having done some writing, I felt better again. But what I mean by that is that my energy level went up. My neurotransmitters started transmitting on just the right frequency or whatever you want to call it — but I felt good. The severity of my withdrawal was significantly decreased.

And if something can decrease the severity of Paxil withdrawal, even if it’s a bit of a stretch, it’s worth mentioning. I’ve noticed it before but didn’t say anything because I thought it was just coincidence. But I’m not so sure if it is.

A few weeks ago I had a moment of clarity where I was able to write a few excellent paragraphs, and the satisfaction of that feeling immediately cleared my head of the usual heavy-headedness of the withdrawal. There was also another occasion when I was told good news about someone close to me, and on hearing that good news, within seconds of hearing it, for an hour or so afterwards most of my withdrawal symptoms became a hell of a lot easier to bear. They were still there but with much less intensity.

I read in Oliver Sacks’s book Awakenings of Parkinsonian patients whose symptoms did not progress in severity as long as they had support of their family, something to look forward to, relationships and experiences of some kind that provided them with a sense of personal fulfillment and meaning. Take away these relationships and the feeling of fulfillment these experiences provide, and the patient would immediately fall back into severe Parkinsonian tremors.

I believe that perhaps I have experienced something akin to this. Sacks speaks of the power of a compassionate human touch to bring a patient out of the painful physicality of their disease. There is no medical explanation for it. But it’s as if the disturbances in the brain, at least temporarily, cease to exist, marking a profound change in, I suppose, the quality of consciousness.

There have been times since my initial withdrawal experience in July when I have clearly experienced an immediate and beneficial neurochemical change due to something happening to me psychologically. Medical doctors don’t like hearing this kind of thing (and those jerks at GlaxoSmithKline would probably take this as evidence that it was “all in my head” in the first place), but I can think of several occasions in which I would normally have had to take a Xanax to feel such an alleviation of my Paxil withdrawal. Instead, I experienced something spiritual, if you want to call it that, that made me feel good, and the withdrawal effects became less intense.

In the black cloud of Paxil withdrawal, there are these little rays of sunshine and warmth to be had. You just have to put yourself in the way of them I think. It’s just a theory, but there it is.

P.S., It’s very possible I’m losing track of the days. I say it’s day 32 of my weaning off Paxil, but I might be off plus or minus one day.