Archive for the 'Hypersensitivity to light and sound' Category
If you were prescribed Paxil or a similar drug, there is a strong possibility that your doctor didn’t do any research or fact-checking when they told you about the side effects of the drug — and that’s probably why you’re here. Most likely your doctor simply read to you from the Compendium of Pharmaceuticals and Specialities, which is the information source most widely used by physicians in Canada. (The U.S. equivalent of the CPS is the PDR or the Physicians’ Desk Reference.) Here’s a quote from a critical analysis of the CPS:
The Compendium of Pharmaceuticals and Specialities (CPS) is the most widely used source of drug information in Canada, and is heavily financed by the pharmaceutical industry. A close examination of its contents comparing a computer-drawn, randomized sample of monographs from its “White Pages” to standard pharmacological reference works demonstrates certain of its characteristics: it uncritically includes many inadequate preparations; it overstates the benefits and understates the adverse qualities of many preparations; and it contains little or no information on relative indications, efficacy, or price. These characteristics serve to promote the marketing goals of the drug manufacturers and severely limit the volume’s usefulness as an objective source of drug information.
And this is where most doctors get their information about the drugs they prescribe. So please be careful when listening to your doctor’s advice. With all due respect to their training, they may not know what they’re talking about, especially in regards to a drug like Paxil whose manufacturer, GlaxoSmithKline, has never been too forthcoming about the real side effects of the drug.
September 5th, 2006.
Some of you might actually know who I am from the original version of this blog back when blogs didn’t really exist the way they do today. I first uploaded Paxil Free sometime in 2001; I don’t remember the exact date. I kept the website up for a couple years, then took it down after it became too much to deal with.
I never wanted to become an authority on Paxil withdrawal. My withdrawal experience was thrown in my face, and although I survived it, it made me feel like a different person — except I didn’t ask to feel like a different person.
So it made me angry. I was glad so many people were able to find comfort through reading about my experiences, but I didn’t want to have anything to do with it. I answered all the emails to the best of my ability, but I didn’t feel like a willing participant in any of it — because I was still angry. I was alive and grateful, but I had nothing good to say about the experience. I was not the person to turn to for inspiration and hope. Emailing me to ask how I got through it all, I didn’t have any secrets or words of wisdom to pass on. I was uncomfortable having people turn to me for anything.
I was also embarrassed by much of what I’d written on the site. I subsequently decided to take some time to revise it and get myself out of the loop for a while. So I took the site down, and immediately it felt like a burden had been lifted. I could just leave the whole withdrawal experience in the past and be done with it. I did make some revisions, but I didn’t stick with it. I felt like moving on instead.
So I did.
March 25th, 2001. (Basic Facts – continued)
My hypersensitivity to light and sound (especially to sound) began after I’d completely weaned myself off the Paxil. But, as is the case with all the symptoms I’ve listed here, it can happen before, during or after one has stopped taking the Paxil. Bright lights or quickly changing shades of light, such as a strobe light or even fast-paced edits in films or videos, become physically painful to watch. You may find yourself dimming or turning off many of the lights in your house (fluorescent lights and LCD monitors are the worst). Staring at a television screen or computer monitor can quickly become painful on the eyes (neurologically painful, I guess).
Along with this is a hypersensitivity to sound similar to that which one might experience during an alcoholic hangover. The slightest unanticipated sound sends a shot of adrenalin through your system that makes you jump about ten feet in the air every time it happens. (Irritating sounds such as someone clipping their fingernails or crunching candy in their mouth can become ultra-irritating.) This hypersensitivity is also comparable to what one might experience from a migraine episode. It can take several months to completely dissipate, in which case it may not be easy to live with, but eventually it goes away. Patience.
P.S. (Sept. 2006): I was still very sensitive to fluorescent lights for about a year or two after I got off the Paxil. Which sucks, because fluorescent lights are everywhere. Those weren’t exacty good times for me. I had more than a few days and nights where I thought, “Is this ever going to end?” Thankfully, it did.
This post is the beginning of the journal portion of this blog — the almost-daily record of my Paxil withdrawal experience from July 2000 to January 2001. I haven’t decided how much of it I’m going to revise or delete. I’ll just work my way through it and see how it goes.
Postscipts and comments were added to the original Paxil Free website. New postscripts and comments will be dated and will appear in italics…
…including this postscript (June 9, 2010): I drop by here maybe once a year. Inevitably I end up reading the website and feel like rewriting some of it. So I do (particularly the angry blaming parts of it). Sometimes I make small changes to the text. Other times I add new post scripts. So don’t be surprised if you read a page and come back to it at a later date to discover that it’s changed a bit.
Thursday, July 6th, 2000.
I stopped taking Paxil about five days ago. I went through a major trauma last year, and taking the Paxil during that crisis did make a difference. It helped. But I didn’t want to be on it forever, so when I asked my doctor about a month ago he said, “The good thing about Paxil is you can stop taking it cold turkey; you don’t have to be weaned off it.” He told me this with confidence — and he’s been a good doctor for me and I trusted him. I found it hard to believe, but I trusted him. He’s a good guy. But like most doctors… well, they speak with authority even when they don’t really know any better than you.
Someone at a Paxil-withdrawal support group wrote: “When my doctor told me to take such drastic steps to reduce [i.e., cold turkey], I was suspicious but figured he knew better than me — I’ll never make that mistake again.” And neither will I.
My advice to everyone is go with your gut feeling — trust yourself first. My feeling was that I should be weaned off the Paxil — and I don’t care what anyone says, that is exactly what you have to do. Cold turkey my ass. I know that what I’m going through right now cannot be good.
Saturday, July 8th, 2000 (continued).
Kathy said, “My eye specialist said there is no connection between Paxil and intrasocular pressure.”
I don’t think the medical community really knows the full effects of Paxil. FACT: The long term effects are UNKNOWN. As for the effects on the eyes or eye-related nerves and muscles — I think there is most definitely an effect on eyesight. During my 6th day of Paxil, when I looked at anything which emitted light (such as a television, a bright window, a computer monitor), the objects looked at if they were faded or being drowned out by a bright overhead light source, and it took my eyes longer to focus. Plus, when I moved my eyes from left to right I experienced the “electrical surges” in my temples.
I don’t think the medical community really knows what Paxil does. When looking up professional articles on Paxil (probably the ones your doctor has read), many of the side-effects of taking Paxil are listed, but I don’t know any which list the effects of withdrawal. By the 6th day of withdrawal, though, my vision was definitely affected.
P.S. (Sept. 2006): All names have been changed to protect the privacy of the individuals involved (including my old doctor). “Kathy” was someone who used to post on a message board.
Preface – February 5th, 2001: This is the first post where I included one of the responses to what I’d written. After this I began to keep a better record of all the conversations and exchanges that took place on the Paxil-withdrawal forums.
Thursday, September 28th, 2000. In response to a post at a Paxil-withdrawal forum [similar to paxilprogress.org]:
Everything I know tells me that alternating 20mg/10mg of Paxil is too much of a drop. The most anyone should alternate or lower a dosage is by 5mg. If you stick to that regiment, it should work. I’m down to 10mg right now, and so far so good.
I told my doctor last week, “You better give me something just in case the brain zaps start creeping up on me, because I am NOT going through that again.” He gave me a prescription for Xanax (aka Alprazolam) which he said is often used to get people through withdrawal from many neurochemical dependencies. No more than twice I day I’ve taken at the most half of a 0.25mg pill (very small amount; sometimes I take a quarter of a pill), and it allows me to walk up and down stairs without experiencing too much dizziness. I am nowhere near 100%, but I’m semi-functional, which I consider an accomplishment.
So by alternating dosages by a maximum of 5mg and taking a little Xanax to “take the edge off,” I’m getting through it. When you try weaning again, the slow route might be the way to go.
Tuesday, September 25th, 2000.
Well, today it my 20th day of weaning off Paxil. I am now down to 10mg, alternating with 15mg for three days (today happens to be a 10mg day), and for whatever reason, I’m feeling okay. I occasionally have a mild tension around my head, but no headaches, no feeling like the brain zaps are just around the corner, hardly anything.
Easily for the past three days I’ve been walking around holding on to the walls, grabbing onto something every time I stood up, not making any sudden movements (especially with my eyes), avoiding loud noises, being extremely careful walking up and down stairs, and absolutely not driving the car.
Then around 10 o’clock last night as I’m watching the Olympics, I start getting tired, and as I do my head clears up and I don’t have any symptoms for the rest of the night.
Then when I woke up this morning, my head was still clear — but seeing how everything usually kicks in about an hour after I get up, I wasn’t very hopeful.
But, to my surprise, I’ve been okay all day. I was not expecting to feel like this today. I picked up a Xanax prescription from my doctor today to help “take the edge off” if the withdrawal got any worse — and worse is definitely what I was expecting — but so far so good.
Tomorrow may be completely different, but what I’m experiencing now is definitely a surprise. I’m still moving slowly and cautiously, but I almost feel like I don’t really need to.
Go figure. Who’d expect to have a good day when they get down to 10mg? Not me.
Saturday, November 25th, 2000 (25th day off Paxil).
Someone said, “It is the pressure in my head and behind my eyes that gets me down. I feel as if I must force myself to focus.”
I should have had those words stamped to my forehead for the past 80 days since I’ve been weaning off the Paxil.
Because I’ve taken multivitamins up the gazoo, I haven’t experienced the Paxil Flu. But right now I seem to have the body aches, and I’m in a mood. I don’t know what kind of mood, but it’s a mood alright.
Anyway, that’s just me. Trying to walk it off. No major brain zaps anymore, but the pressure behind the eyes is still there. That’s the one constant throughout all of this.
This is a serious impairment on my brain function.
There is not a curse loud and long enough to express my anger and frustration.
P.S. (Sept. 2006): The pressure behind the eyes mentioned in this post is part of the brain zaps or electrical surges that, for me, began in my eyes and then went through my head and the rest of my body. There was always that weird pressure inside my eyes that made it feel like a brain zap was about to hit me any second. I’m sure the hypersensitivity to light was connected this insane electrical pressure in my eyes. (I just added Vision / Eye Problems as a category, though for the most part eye problems will be convered by the categories for the electrical surges and hypersensitivity to light and sound.)
Wednesday, December 6th, 2000 (continued). Responding to a message on paxilprogress.org:
If you’re down to 5mg and feeling really good, you may be experiencing the mysterious “Paxil window” where one’s vitality and overall sense of well-being feels about as good as it gets. It seems that for some people the window never closer; they get off the Paxil completely and things only get better. But for others it really is a window and it eventually closes.
That’s what happened to me. When I was at the dose you’ve got yourself down to (around 5mg), I was feeling really good. Specifically, I experienced a sexual rejuvenation that made me feel like I was in my teens again. No complaints there. But eventually the window closed (it was open for about two weeks) and I became completely impotent. I got worried about that, but luckily it didn’t last too long. It’s been about two weeks since things became… limp? (Whatever adjective suits you.) But within the past three or four days things have returned to normal. I don’t think they’ll ever reach the peak I experienced during my “Paxil window,” but I can at least step up to the plate again. While I was at the stage you are right now, though, I was hitting a home-run every single time. Nice.
Friday, December 22nd, 2000 (52nd day off Paxil).
The update of how I’m doing is kind of melodramatic. It’s not as good as I’d like it to be, or as good as I thought it first was, but here it is.
Anyone who has read my previous postings knows that I’ve been off Paxil for over a month now, but many of the withdrawal effects were still lingering, namely the electric-shock sensations that seemed aggravated by fast eye movements, bright lights — all that crap. I was getting really, really sick it. Really close to the end of my rope.
Then about 10 or 11 days ago I decided to do one those cleansing fasts where one doesn’t eat anything for two or three days, only water and fruit juices. None of my usual vitamin supplements, nothing; just water and pure fruit juices.
Well… it worked. Like many of the things we do to make ourselves better, it wasn’t much fun while it was happening, but within a day or two after I finished the fast (which lasted about 2 and a half days), I began to feel better. But more importantly…
I woke up last Saturday (6 days ago), and the electrical sensations were gone. There’s no other way to describe it except to say they were gone. I immediately returned to my fully alive, animated self, ready to jump up and down and hit a home run. I could feel it in my eyes that it was gone. I still had a painful sensitivity to bright light, and sudden loud noises still made me jump about ten feet in the air, but the electrical sensations behind my eyes, in my head, everywhere, were gone.
Tuesday, January 2nd, 2001 (63rd day off Paxil). A message about my Paxil progress:
I think it’s been about two months since I took my last tiny sliver of Paxil, and I think it may be over soon.
I don’t have any of the electric-shock sensations shooting through my head and my eyes anymore. What I’m experiencing now is still somewhat severe, but it’s gradually becoming less severe, and I think it may be the last of the withdrawal effects.
Mostly all I have now is an extreme sensitivity to light and sound, which is similar to a hangover sensitivity, except it’s there all the time, not just in the morning. (Note: These are still debilitating withdrawal effects, but I think they’re the last of them.)
The other thing I have, probably related to the painful sensitivity to light, is bad headaches, like the kind of headaches that come from caffeine withdrawal; all the Tylenol in the world won’t make them go away. It’s an ache that reaches every part of my body, not just my head (my bones are aching). It’s a constant drag on my energy — but a walk in the park next to the electrical sensations. Sometimes the headaches get so bad that I become a little dizzy or disoriented, but that doesn’t happen often.
From everything I know about withdrawal (Paxil withdrawal, Valium withdrawal, heroin withdrawal, etc.), this is probably the end of the line — mainly because I’ve experienced every other withdrawal symptom anyone could have. There’s just nothing left to go through.
I think this may be progress. If things continue to go the way they are, except for the psychological scars, which are significant, I should be able to return to the land of living within a few weeks. I hope.
If the promised land really is in sight, if that’s really what I’m looking at right now, I probably won’t be around for awhile once I get back on my feet, mainly because I just want to live and make up for all the months that were stolen from me while I was going through withdrawal (which began last July; that’s how much of my life this junk has taken from me).
If I finally am getting better, one thing I will do before I take on the world again is set up a website which will contain all the significant post I have made to paxilprogress.org, and all the informative responses that I received from them. Looking back over these messages, I find that they capture the history of this experience better than any story I have the energy to write. I have detailed records of my experience from the first day of withdrawal up to the present day, and I think it may provide an excellent picture of what the experience is really like. Most people probably won’t have as hard of a time as I have had, but that’s what makes it valuable. It’s an accurate history of just about everything that could happen to someone.
This experience has completely consumed six months of my life. The end is in sight.
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.)
Saturday, January 6th, 2001 (67th day off Paxil).
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?
Thursday, January 11th, 2001 (continued).
I want to reproduce a short exchange Matt and I just had in case you missed it.
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?
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.
Sunday, January 21st, 2001 (82nd day off Paxil). Email to a friend:
I’m beginning to think of my future now. I still have a hypersensitivity to light and sound — the slightest unanticipated sound, like the house creaking or even the sound of someone clipping their nails, makes me jump about 20 feet in the air — and in the run of my day, this is what takes up most of my energy. But I’m not waiting around for it to get better. Whatever kind of work I eventually find will have to be tolerable to these remaining withdrawal symptoms. I get bad headaches and my bones ache when I walk around too much, but I’m basically at the point now where I’m ready to move on. I am far from 100%, but as long as I take it slow and carefully, I think have a chance of eventually making a full recovery.
May 16th, 2001.
Thinking the worst was over, I began looking for work on February 16th, 2001, about three months after I got off Paxil. I began to take what I thought were the first steps towards living my life again. I still had a hypersensitivity to light and sound, but it didn’t seem to kick in until much later on in the day, usually somewhere between 7 and 8pm, which was manageable to me and which seemed to indicate the withdrawal effects were gradually working themselves out of my system.
Psychologically, the transition was more difficult than I thought it would be. Just being around people again in a normal social environment took some getting used to. I found myself feeling apprehensive, hesitant and less spontaneous than I was used to being. But after seven months of social isolation, I suppose this was understandable. Socially, I was feeling a little rusty, but I was confident that I’d be all right as soon as I could find a job, get into a routine and develop a normal structure of social relationships again, all that good stuff. I’d been in starting-from-scratch situations before and, although I had my down days, I knew I could get through it if I kept pushing myself.
The social adjustment wasn’t easy. Things were made even more difficult when I began having bad headaches after the first week. I now understand what people mean when they refer to a “pounding headache.” It was as if I could feel my heart pounding — but inside my head; it was a pulsating pain. I took every kind of headache pill to fight off the headaches, but nothing worked. As the headaches continued, the hypersensitivity began to set in earlier during the day until I was eventually hypersensitive all the time, twenty-four hours a day.
It was a sinking realization the day I said to myself, “It’s still not over.” The withdrawal seizures were over and done with, but my life still wasn’t mine. I was determined not to let this experience take away any more of my life, and so I tried to jump back on the horse the first chance I had. But that determination may have gotten the better of me.
I can’t say for certain, but I probably shouldn’t have pushed so hard so soon after my withdrawal. My body, physiologically, neurologically, was still in recovery and in need of healing. I don’t know what the hell I should have done (sitting around on my ass out in the country by myself was driving me crazy), but I probably should have given myself another month to take it easy, to give myself more time to heal instead of throwing myself into a situation that was more stressful than I anticipated. It’s as if I was trying to will my life back, but my body wouldn’t let me. Mind over matter, my ass.
The headaches and the hypersensitivity got so bad that I could barely function. Trying to put on a pleasant face during an interview or any kind of social interaction was — well, it wasn’t working. I couldn’t fake it. I was so physically miserable that my spirit couldn’t fight it anymore. And after a month or so of trying to walk it off, I had to give in to the damn withdrawal again. At this point I may have wanted to blow my brains out. I wasn’t exactly taking track and was having a hard time really giving a damn about anything anymore.
That was about two months ago as I write this. I’m taking a small dose of Xanax to help with the headaches, and although I can still feel a pounding in my head, it’s not killing me like it was before, and my hypersensitivity is gone. (But I don’t know how long I want to keep taking these pills.)
In the opening to her novel, Ordinary People, Judith Guest writes that to have a reason to get up in the morning, it is necessary to possess a guiding principle, a belief of some kind; even a bumper sticker will do. But I don’t know what the hell keeps me going anymore. I don’t know what my next move is. I’m still waiting around for the withdrawal to work itself out of my system, I guess.
I’m not so sure how high my confidence is flying right now, or even if it’s confidence that I’m lacking. Which leads me to a question of faith (not religion). This is a big one.
I’ll leave my final thoughts on that, though, for when we get to the end of this blog. Until then, what follows is a sample of how my post-withdrawal experience played itself out between February and July 2001. (July 2001 would be a year since my initial withdrawal experience.)