Paxil Free

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.)

Thursday, February 22nd, 2001.

I spent a solid seven months withdrawing and recovering from Paxil. Only recently have I been able to get on with my life, or at least begin to take the first steps. I feel confident in moving forward, but at the same time I feel uneasy. It’s as if I don’t know if I’m the same person I was before all this began. Has anyone who has survived withdrawal experienced this apprehension?

Sometimes I seem to slip into a state of shock when I’m struck by the fact that seven months of my life were consumed by withdrawing and recovering from Paxil. I become almost bawled over by a tremendous sense of loss. It’s emotionally numbing. The more I get out into the world again, the more I realize how much of my life I’ve lost, and it doesn’t feel so good; it’s surreal and sad at the same time. I should be feeling good that I’m getting on with my life after the Paxil withdrawal, but all I seem to be feeling is this sense of loss. I didn’t expect to feel this way.

First response:

November 3rd, 2000. That was the day I ingested my last Paxil pill (I was down to 5mg for a month). It was a day of celebration for me! This was my fourth and last attempt to leave that fog I was in. My family couldn’t understand why I was so excited. They have been supportive but I don’t think they can truly understand! Since that day I have experienced a whole new set of problems, I would say at the neurological level.

I understand how you’re feeling. Everyone that has suffered bad effects from Paxil have had differences, but we have all suffered. I’ve read stories about people who feel great after finally getting off. I am not one of them and you may not be either. I can’t measure my recovery day by day. I can only look back from month to month and see improvement.

I sense you are strong and determined to get better and that’s part of it. I am better than I was three months ago, but I still feel I have a way to go. Please keep telling yourself you can do it. There are us out here that are willing to support you.

Second response:

You’re where I was after I spent one solid year trying to recover from the withdrawals of Paxil. One day I declared that it was officially “over” (little did I know), and then was overcome by the most profound grief I had ever experienced. Not only did I mourn the amount of time I’d spent being in hell, but I was mourning some part of me that I felt had been robbed — eradicated — by Paxil. I felt disconnected to a world through which I once moved so swiftly and easily.

I now viewed the world as a hostile environment; after all, the doctor I had trusted lied to me and coerced me and then betrayed me. I no longer had my innocent trusting nature. I felt as though I had been held hostage and was now released into a world that I didn’t like very much. It was the most devastating experience of my life.

It took another year for me to comprehend what true damage this drug had done to me and with each realization I became madder and madder (at least that was better than sobbing every day). Someone told me that my anger would get me through it quicker than anything else because it seemed that I was going through the stages of grief that one experiences when a loved one has died. It took another year for me to get to the acceptance stage, albeit reluctantly. I was not happy that I’d been changed, but I just kept telling myself that it was okay — there were still plenty of things for me to do besides what I did in my previous career.

So you are not alone. I think all these feelings, troubling as they might be, are perfectly normal. We have been robbed of a period of our lives and we can never get back even one day that we spent with the headspins, the visual lags or the zaps. So good to hear your update. I wish it were more positive, but I do believe that you will still continue to get better as time goes on.

Third response:

I’m so glad you posted this. Here’s why:

During the worst of the withdrawal symptoms, I called around trying to find a good talk therapist because I felt so upset — I felt I’d benefit from talking with someone about this. I saw someone this past Tuesday. It was just a consultation appointment; I like to check these people out first before getting into my feelings. What really took me by total surprise was that very intense emotions welled up inside me and came out in that brief session. I even cried! I couldn’t believe how hurt and sad I felt. I told this therapist that I had no idea all these feelings were so intensely deep inside and that I wasn’t sure what to do with them all.

She was a DUD therapist and didn’t offer even a glance of empathy, so that made it all the more painful. But, I discovered during that experience that I’m grieving a tremendous loss and feeling of having wasted years on this medication. My feelings are just incredibly intense regarding my concerns about what this drug may have done to me. It’s overwhelming at times.

Know that you’re not alone. I’m so glad you shared this.

Fourth response:

Yes, I identify with your feelings a lot. I wouldn’t be surprised if many people feel a grieving over their experience. Just wait: some dorky psychologist will coin the phrase “Post Traumatic Paroxetine Disorder” to address this. I hope not, but there is a need for a time of valid grieving in my opinion. It would make sense.

There has been tremendous betrayal and loss with the experiences we share. We’ve been abused by the drug industry, basically, and cheated by our doctors, who should have known better. And yes, as you put it so well, the time and the life we’ve lost and the horror and fear we’ve experienced during withdrawal have been great. I alternate between feelings of grieving and sadness — and feelings of anger towards the medical “profession” (along with plenty of mixed feelings towards friends who were far from friendly with me during my withdrawal). I’ve really lost respect towards the medical profession in general. I think it’s become so specialized that the right hand doesn’t know what the left hand is doing, and we’re all suffering for it. Plus, no one in the profession really holds peers accountable for their actions. Their little comradery on the golf course is more important than the ethics of their job.

Wednesday, March 14th, 2001.

One of the psychological side effects of feeling alone and being alone throughout most of my withdrawal is that every human contact, however slight, takes on the greatest importance. Actually, you don’t have to be alone throughout your withdrawal to feel this way. All you have to do is live through it.

One of the worst things for me about my Paxil experience is that I need people more than I normally would, but that when most people get a whiff of that need, they flee, they disappear, etc. I know this. I understand this. And I hate it that I am in such a needful condition, that I need people so badly now (eight months now since my initial withdrawal, and I still don’t have my life back, myself back). When I don’t hear from someone for awhile, it doesn’t take me long to miss my contact with them. I hate admitting to this. I hate being in the state I’m in.

There’s no dignity in what my withdrawal has put me through, in any of this, and I just want to go home to a place where I can rest. I have often wished that that place of rest was with someone, someone I could touch, someone who is really there for me. But it’s not. And it’s so hard sometimes — it’s been so hard — not to have that kind of home. I just don’t know how much longer I can last like this. Definitely a bad day for me.

First response:

I, too, find myself needing people more. I wish someone would just touch my shoulder and say, “Hey, how are you? I am glad that you are here.” But no one does that, so I feel really alone. My so-called friend of years asks me what’s new, and I mention lightly that I have been through a depression — and that was the end of the emails. At least there’s paxilprogress.org

Friday, April 6th, 2001.

This is something I wrote in an email today. I don’t have the energy to explain the context of the conversation, but basically it’s about the paradox of beginning to feel healthier, having survived my withdrawal, but instead of feeling better, I feel an apprehension, not necessarily a resurgence of depression, but a kind of insecurity.

I wrote:

“At this point in my life, recovering from my Paxil Experience and about to return to life as I used to know it, I feel an apprehension, a feeling that the foundation I used to stand on, my personal history (which has been sort of blank since last July when my withdrawal began), that my history (the experience that makes us) isn’t there as firmly as it used to be. And it’s almost as if the healthier I become, the more insecure I feel.”

First response:

I can understand wanting to get back to “normal” in a hurry, but sometimes it just doesn’t work like that. Slow for someone else may not be slow enough for you. The one thing I have learned is that I now take as much time as I need to get over some things. Like at this point in my life I am still kind of getting over the shock of how the person I was seeing before my withdrawal experience ended our relationship. It has been about a year and a half and I am just now slowly beginning to trust people again. That is how much time I needed for it and maybe even a little more.

Do you know just this past year I have met men that actually admit to crying? I know it feels bad but it is really a good release. I do think from reading your posts and what you’ve just said that you need to say “stop” and try to start with the little things, like how the sky looks. I still have this “awe” for things, it’s so hard to explain.

Sunday, April 8th, 2001.

Peter wrote:

Well, it’s day 9 on 10mg from 15mg and it’s like the 4th of July in my head. The zaps appear when I move my eyes. They still squeak too. Everyday when this crap begins, oh, and it’s funny how it doesn’t start until around 3-4 p.m. I’m so tempted to just take another 5mg and this will all be over, but I keep telling myself, “I’ve made it this far, let’s try another day.”

Here’s hoping for “zapless” days once again.

My response:

As someone who has been there (and back), let me tell you that it will get better, but it’ll never get better as fast as you want it to.

But if the zaps don’t kick in until around supper time, that’s a good sign. As you go on you may experience some days of extraordinary clarity of mind and other things related to “The Paxil Window.” That might last for awhile and then as the window closes you might get hit with the zaps again. It’s a roller coaster at times.

I took Xanax (Alprazolam) on the days I didn’t think I could take it, but I just wanted you to know that if the zaps aren’t kicking in until later on in the day, that means that the end is getting nearer.

Speaking as someone who’s been there.

First response:

Just hearing from you, that if the zaps only come later in the day that it will be better soon, well, I nearly cried with joy. I was so happy to hear that.

Thanks you.

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.
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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.
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April 21st, 2002.

I had someone ask me this in an email: “What were you like while taking the Paxil? Did it help you deal with matters better, keep you in control of your emotions? Did you feel better than you do now?”

I didn’t do anything to take care of myself while I was on Paxil, except wake up every morning and take that little pink pill. Talk about taking the easy way out. But yes, it did help me deal better with my emotions. I realized afterwards that I was detached and numbed out from my feelings and the reality of my life, that I didn’t cry once while I was on Paxil. But at the same time I seemed to feel good, relaxed, easy going, both socially and emotionally. Paxil did work for me — I was depressed, then I took the Paxil and wasn’t depressed.

I did feel better then than I do now, but I’m dealing with myself and life differently now, being more honest with myself — not ignoring my emotions by taking Paxil. My life is a hell of a lot harder now than it’s ever been, but that’s the choice I’ve made. Real life can’t be easy all the time. It’s work.

Instead of taking a pill, I’ve decided to face life more honestly and actually identify and work through the underlying issues that caused me to feel depressed in the first place. It would be a hell of a lot easier to start taking Paxil again, but I want to build a foundation of emotional health that is real, not neurochemically induced.

That’s my personal choice, and it’s definitely the hard road, the road less travelled. But I’m giving it a try (it may take years), because if I do managed to live a healthier life where I don’t feel depressed all the time (it’s still a battle for me), it’ll be because I’ve worked on developing more positive and healthier attitudes towards myself, towards taking the action of taking care of myself.
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