JULES: We should be fuckin’ dead now, my friend! We just witnessed a miracle, and I want you to fuckin’ acknowledge it!

VINCENT: Okay man, it was a miracle, can we leave now?

Friday, January 26th, 2001 (87th day off Paxil). A journal entry:

I’m still trying to get used to the feeling of being in the land of the living again. I’ve been gone for a long time — on a trip that I never chose to take and wouldn’t wish on anyone. The feeling that, Holy shit, I’m still here — alive. It’s a feeling that will take some getting used to. It’s not going to happen overnight. Jesus, I shouldn’t be alive right now. And here I am.

The best I can do right now is to put one leg in front of the other (and not to dwell on anything for too long). To look forward, and to walk forward. Not walk fast, but forward. It’s not just the best I can do; it’s all I can do.

I guess it’ll have to do, but because I don’t think I can do anything else.

During my withdrawal, I had peaks and valleys of cognitive ability. Except for one brief period, writing anything was a challenge. Around the middle of November, a few weeks before I got down to zero milligrams (my last “official” dose was on November 1st, but I had to take an occasional sliver of Paxil for a couple weeks afterwards), I lost my ability to read and retain more than one paragraph at a time. Nothing seemed to hold my interest, and nothing I read seemed to stay with me. My memory was going right down the toilet. I couldn’t retain or recall anything. It sucked. Conversationally, I’m normally more animated than most people I know, but between November and December, I became the shy guy in the corner who kept to himself (I’m still somewhat affected by this).

Only recently, within the past few weeks, have I been able to read on a fairly consistent basis again and to remember what I was reading. It’s like I’m being re-introduced to the world of thought again. Conversationally, I’m not nearly as lively as I used to be, mainly because the withdrawal threw me so far out of the loop that it had a negative effect on my self-confidence. I’ve had plenty of experiences related to my Paxil withdrawal that have beaten down hard on my faith in humanity, but I expect that that, too, will gradually recover. And my self-confidence will probably recover along with it.

It takes time to return to normal after an experience like this. I try not to let it bother me, but often it does bother me that I’m not as lively as I’m used to being and as people are used to seeing me. But I’ve survived a severe neurological trauma (i.e., the Paxil withdrawal, which stole away almost seven months of my life). After surviving something like this, it’s only natural that our legs are going to feel a little wobbly at first. It takes time to get one’s strength back.

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.

Hi everybody,

I want to reproduce a short exchange Matt and I just had in case you missed it.

Me:

By the way, the zaps, which for me were in my eyes, behind my eyes and in my head, and for others can spread to just about any part of the body (e.g., the face, arms and legs, etc.) — if you look up the paresthesia of sensory epilepsy, you’ll see that the electrical sensations and the pattern of the surges are remarkably similar. The surges begin with one overwhelming surge and then continue, dissipating in strength, but in a continuous rhythm, in waves. I’m talking about SENSORY EPILEPSY. Sound familiar?

Matt:

I work in the area of disability — and recently had a presentation by a colleague on epilepsy. She said the jolts people experience on falling to sleep (big with Paxil usage) are called clonic seizures and are a form of epileptic activity — I’m sure the zaps are too. I don’t want to scare anyone with this — because we all have the propensity for this as we are all “electric” — I just thought it explained a lot.

I think it explains a hell of a lot too (especially since I noticed that the zaps, and now, since I got off the Paxil, my hypersensitivity to unanticipated sound, occur with greater frequency when I’m trying to go to sleep).

Take note: Within this short exchange, Matt and I have proposed an hypothesis. It’s an hypothesis which probably, when compared to the current medical literature on paroxetine withdrawal, is at the cutting edge of the medical research in this area — which isn’t hard to believe once you consider the general ignorance of the medical community with respect to paroxetine withdrawal.

The similarity between epileptic activity and the paresthesia of Paxil withdrawal cannot be just coincidence.

Randy said:

I saw a psychiatrist yesterday for the first time ever. Of course he doesn’t know of Paxil withdrawal to any degree. He wanted to talk about my birth experience! He does not agree that my symptoms are due to withdrawal and wants to talk about my early childhood and relationships. F*** off! What’s the point!

My response:

Tell me about it, man. When I began weaning off Paxil, I decided to do it under the supervision of a shrink — not a psychologist, a psychiatrist. As a medical supervisor, he knows what he’s doing. He, like many psychiatrists, knows how to deal with a psychological problem with drugs. If you feel this, take that. If you feel that, take this. Utterly useless. When he actually does have an insight, it seems to be something right out Psychiatry for Dummies. Talking to my dog is more therapeutic.

This guy I’m seeing comes from an older generation of psychiatrists who seem to work under the principle, Give the patient a pill and see what happens. Don’t bother talking to him. Don’t bother really listening to him. Don’t bother trying to understand him as a person.

Our health, diseases, and reactions… can only be understood with reference to us, as expressions of our nature, our living, our being-here… in the world. Yet modern medicine, increasingly, dismisses our existence… seeing our diseases as purely alien and bad, without organic relation to the person who is ill.

The psychiatrist I’m seeing now seems to work with “the idea that one must attack the disease with all the weapons one has, and that one can launch the attack with total impunity, without a thought for the person who is ill.” (Awakenings, continued from page 228, 1990 edition.)

Whenever I show any strong emotion in front of this man, his immediate reaction is, “Perhaps you should think about trying another anti-depressant.” It’s as if he can’t deal with real people. Forget about actually listening to me. Forget about the fact that I’m an actual person and not some chemical reaction gone awry. I’m able to trust this guy (or at least give it a try) and show him my feelings, and he wants to pump me up full of pills — more pills. This was the antithesis of therapy, folks.

Therapy comes from the Greek word therapeia, which means healing. I reach out to this psychiatrist for help, and he wants to give me a bottle of pills. He’s making his hundred dollars an hour off me, but I wonder if he’s doing anything else. Trust me on this one: the ancient Greeks are turning in their graves.

I’ll continue to see him so he can medically supervise my withdrawal from the Paxil, but as soon as I’m feeling raring to go, I’m gone. This man has made a living for the past thirty years by not listening to people who need to be listened to, who are in need of that healing (paxilprogress.org is so much better). People turn to him thinking that he’s helping, but mostly he’s just make a living off them. It’s kind of hard not to think that sometimes.

I’ll be seeing him probably at least another three or four times, and who knows, maybe I’ll get something from it. Perhaps if I can package my problems in an intellectual manner which he can grasp more easily, I might actually be able to get something useful from these conversations.

So, from what I’m hearing from other people, and from my own experience, I’m inclined to believe that psychologists are the best bet, because they don’t rely on medications to solve the situation as quick and easy as possible (easy for doctors, not us). I think a psychologist is more inclined to listen whereas a psychiatrist is more inclined to prescribe. They are two completely different approaches to healing. And in my opinion, one of them works and the other one doesn’t.

You could probably have the same experience you’re talking about with a psychologist, but I think the chances are less likely. I say this from my own personal experience. My experience may be rare or it may be common, but I think it’s probably more common than not.

You said, “What’s the point?” And I say, “I know the feeling.”

I’ve spent the last six months trying to get off Paxil, and I’ve done it. It was the most debilitating hell I have ever experienced. I no longer have the worst of the withdrawal symptoms — namely the electrical surges behind my eyes and in head.

But now that I’m off the Paxil for good, it feels as if my entire nervous system is being rewired — that is to say, it’s painful. My body and my bones feel like one big painful ache. A few years ago I experienced a full-body migraine that put me out of commission for about a week, and this seems very similar to that, except most of the pain is coming from my body and not my head. Also, throughout the withdrawal, I’ve experienced varying degrees of sensitivity to light and sound, but within the past few days, this sensitivity has gone through the roof. Every sound, not just loud and sudden sounds, is filling my system with adrenalin and wiping me out.

I’m wondering if anyone has experienced this during this period of their withdrawal, how long it lasts, what can be done about it, etc. It doesn’t compare to the electrical surges, but it seems to be as equally debilitating.

Man, when is this going to end?

First response:

You hit the nail on the head. Your entire neurological system is rewiring itself. For the entire first year after getting off this garbage, I ached. I felt as if I had aged 100 years. I could do nothing, and I do mean nothing! As for the light and sound thing — it’s very common in traumatic brain injuries, even acquired brain injuries, such as those caused by toxins. There was one point for me where even the wind was too loud. Certain sounds will make my brain feel as if it’s frying or short-circuiting. Certain lights will make me feel as though I’m going to have a seizure, especially those headlights with the bluish tint (like a strobe light). I am unable to drive in traffic at night. I’ve heard from other SSRI survivors that this can go on for several years.

Second response:

My theory is that since Paxil has a dulling effect, that life feels very raw without it. This happens because before Paxil, you were already generally desensitized from repeated stimuli. Paxil hides experiences enough so that you have to get used to the little things again. So give it some time and your senses will adjust to comfortable levels again.

Third response:

I too have a sensitivity to light and sound that I didn’t have before my Paxil withdrawal. I prefer dim lighting and I’m always turning lights off in the house. Other than that I feel much better, just very overweight from this crap.

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.)

Occasionally everything falls into place. Even a broken clock tells the correct time twice a day. Whoever was the first to say that has earned my admiration. The poem falls into the right hands at the right moment, and it works perfectly.

I just read a poem by a friend of mine who is a well-known writer. On another day this poem would have meant nothing to me. I wouldn’t have felt it — that is, it wouldn’t have been as real to me as it is right now.

It’s a poem about him and his son walking through a graveyard where some famous writers are buried. His son has “passed beyond boredom into resignation” and would rather be doing anything else. The groundskeeper, who acts as their informal guide and happens to be French and doesn’t speak a word of English — he “would as soon being doing this as something else.” The son in the poem speaks fluent French and acts as the translator. Listening to his son and the guard speaking, recognizing a word here and there but unable to grasp anything that’s being said, “It’s as if he and the guard are old friends now, and I’m there to be humoured.”

Like I said. Perfect. Perfect because I know the feeling.

Or maybe you had to be there.

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.

This felt like the greatest relief of my life. I was in the bathroom taking my morning shower, and about halfway through it I realized that my eyes were okay, that my head was okay, that everything was clear. I don’t know how long I stood there not washing, just standing there crying under the shower. I couldn’t believe it.

I got dressed and went on with my day and didn’t tell anyone, because it was still a bit unbelievable to me, and I was half expecting it not to last. But it did last — for two whole days. And they were the best two days I’ve been able to live in the past six months.

Then on the third day I started getting headaches, extreme body aches; every time I stepped on the ground too hard, I felt like I was about to get a migraine. Physically, my head and my body were just one big ache.

Most of that has faded, although today I’m still feeling stiff, and my eyes are feeling that way too. I wouldn’t say the electrical sensations have come back, but it kinda feels like they could. It kind of hurts to move my eyes if I move them too far to the left or the right. It’s as if the muscles that control my eyes are sore and stiff. It’s hard to explain.

Perhaps it’s a residue of the brain zaps I had at varying degrees for the past three or four months. I don’t know. I’m sick of theorizing. Maybe the worst is over, maybe it’s coming back — I don’t know. But I’ve been feeling pretty lousy these last few days. Last Saturday and Sunday were amazing, and now I don’t know how I’m doing. This may be progress, or it might just be more of the same. I can’t tell anymore.

I think I’m going to try another fruit juice fast right after Xmas. I’ll just keep doing what I can.

But anyhow, that was my news. I had two solid days of pure consciousness, nothing getting in the way of my nature; relaxed, flowing thoughts and feelings. Everything running smoothly. Not a sign of withdrawal.

I don’t know what’s going to happen next, but we’ll see.

For those two days, it felt like the greatest thing in the world.

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.