Paxil Free

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.

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.