Archive for the 'My withdrawal (Part 1: Cold turkey)' Category
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.
Thursday, July 6th, 2000 (continued). An email to a friend:
My head feels like it’s filled with helium. This is the weirdest physical sensation I have ever experienced. It’s a physical feeling in my head, which is an unusual place to experience physical sensations other than headaches. And if this doesn’t show any signs of letting up by tomorrow, I’m going on the pills again. It’s almost a physical disability; there’s no way I could work while this is going on.
Dr. Wyndham said I could stop taking the pills without easing myself off it, so that’s what I did. But since I’ve been feeling these whacked out after-effects, I’ve done my own research on the ‘net, and every source I’ve found has said that one should not stop taking Paxil cold turkey, that the best way to go is to ease oneself off it.
I realize the ‘net may not be the most reliable source at times, but everything I’ve read so far from professional sites tells me to do the opposite of what Dr. Wyndham told me — and seeing how I’m feeling some seriously whacked out effects here, I’m a little concerned, and I’m thinking about going back on the Paxil. Dr. Wyndham said I shouldn’t have to go back on it unless going off it made me feel suicidal or severely depressed. I’m not really experiencing any kind of major depressive thoughts or feelings — but sometimes I think I easily could; I don’t know why I’m not.
So naturally I’m concerned. There’s no way I can work 9 to 5 while this is going on.
I had insomnia for most of last night. My appetite seems to have come back today. But I am so light-headed as to be almost disabled — I’m serious. Two or three times a day I have moments where I want to cry uncontrollably and usually do (today’s the second day of that).
I’m probably going to go back on the Paxil tomorrow if these symptoms don’t let up. I’m not depressed (I don’t think so), but my head feels like it’s full of helium every second of my waking day.
I think I could slip into a severe depression if this keeps up much longer.
Friday, July 7th, 2000. Having received several responses to my previous posts, I responded with:
Thank you for your messages. Knowing that there’s a way out of this is an overwhelming relief for me at the moment as I’m still in the middle of severe withdrawal.
It’s disheartening to see so many other people going through this. It’s unbelievable that this can happen. But hearing from other people who have gotten through it, who are getting through it — it gives me strength. As understanding as the people who care about me can be, this message board is even better (and I only discovered it yesterday). Thank you so much. I can’t express it.
Friday, July 7th, 2000 (continued).
This is an email message I wrote to a professional counsellor I was seeing this past year (just wrote it today).
I went through some traumatic events this past year that eventually led to my taking 20mg of Paxil every day. The Paxil helped get me through the year. After I got my life back on track, I decided I didn’t want to be on the Paxil anymore (I didn’t want to be on it in the first place, but I was completely desperate at the time, and it did work well for me). So my doctor, who has been a good doctor for me and who I trust, said I could stop taking the Paxil cold turkey. He said I might have mild nausea, headaches, a little dizziness for a couple days, but that it would go away. (How many of you are laughing at that sentence?)
About six days ago, I stopped taking the Paxil. And for the past three days I’ve been barely functional. For the past 72 hours I’ve experienced these wonderfully debilitating electrical surges in my brain every time I move my eyes. (Try going through a day without moving your eyes.) I feel like I’m losing my mind.
Friday, July 7th, 2000 (continued). This is a response to someone’s question about weaning (I don’t have their original message):
From what I know (and I’ve learned an amazing amount in the past 24 hours), dropping from 40mg to 20mg is too fast. Just today I had to go back on it after six days of hell after going cold turkey (doctor’s orders, the cold turkey that is). Once I get back to myself again (already the brain zaps are gone), I plan to ease myself off as slowly as I can — I don’t care how long it takes as long as I can get off it. No matter how you do it, though, everyone says to go slow; you cannot rush it.
Friday, July 7th, 2000 (continued). This is a repost of someone else’s posting, but I think it’s a good one:
For all of you new people who are just stopping cold turkey, please listen up. Paxil needs to be withdrawn from very slowly. You can not just stop, or stop at 10mg. You need to wean off of it. (Most doctors do not know this). If you go too fast, you will experience severe headaches, nausea, dizziness, electrical zaps, etc., in your brain. I’m telling you this because I’ve been seeing a lot of newcomers trying to get off Paxil quickly and experiencing bad side effects. This is your brain you’re dealing with. Please take it slow. For anyone interested, this is how I did it. 20mg one day, 15mg the next, alternating for three weeks. Then 15mg one day, and 10mg the next, alternating for another three weeks. Then 10mg one day and 5mg the next day, alternating for another three weeks. Then you can go down to 5mg for three weeks. I realize that everyone is different. But this is a sensible way to withdraw. It might take you longer, but it shouldn’t take less time. Give yourself a good three months at least. If you experience any dizziness, you can take Xanax, Dramamine or bonine (or consult your doctor). I just hate to hear about someone stopping cold turkey. Please take good care of yourselves and wean, wean, wean.
Saturday, July 8th, 2000.
I began taking Paxil last year after experiencing a series of traumatic events which left my spirit drained, less humorous, less alive, less caring about living, etc. I wasn’t severely depressed, but it was beginning to interfere with my responsibilities at work, my social relationships, my personal relationships, everything. I eventually took the Paxil at 20mg/day, and it did help.
Meanwhile back on the farm…
I got on a Paxil-withdrawal website a few days ago because I was experiencing “brain zaps” after my third day off Paxil cold turkey (doctor’s orders), and I knew I had to do something. For anyone who doesn’t know what “brain zaps” are: It feels like a mild (if there’s such a thing) electric current going through the front of your head, except it’s inside your head. It occurs in fairly regular intervals (for me it was about once every 10 or 20 seconds) — and it kicked in whenever I tried to go sleep on the third day of going cold turkey. It’s not really a “zap” though, more like a surge of electricity, like a thunder storm building up over the horizon, except it’s inside your head and it surges up from zero to overload in about 2 seconds and wipes you out.
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.
Sunday, July 9th, 2000.
Some people have stronger reactions to Paxil. I know people who are taking Paxil, 20mg a day, and they look sedated. They say when they take the Paxil in the morning, they’re high the rest of the day — so they don’t take the Paxil in the morning; they take it at night just before they go to bed and it works for them better that way. These are people I know who can’t function without Paxil and will probably take it for the rest of their lives.
That’s not the situation I’m in and I plan to wean myself off it eventually. But as someone who has recently experienced the horror of going off it cold turkey like my doctor said I could, my advice (and the advise of everyone on this board [similar to paxilprogress.org]) is to wean yourself off it slowly whenever you do decide to stop taking it. Also, it’s possible that the longer you’re on it, the harder it is to get off it. And if after 3 months on Paxil you’re still feeling somewhat sedated or dulled, you may want to try lowering the dosage by 5mg (or take the pill before you go to bed).
I wouldn’t recommend staying on the Paxil for more than a year. Talk to your doctor but listen to the people on this board too. (It seems that most doctors are not very well informed.)
Monday, July 10th, 2000.
Today is my 3rd day back on Paxil after going through the hell of cold turkey withdrawal by my doctor’s orders (my plan now, of course, is to wean myself off it slowly). The electrical surges in my brain immediately disappeared — and that’s the only thing I care about — and I’ve been feeling sleepy with a slight headache ever since. I’m sleeping like a dog, although the timing is still a little bit off (I’m working on that).
Also, my immune system is back to normal. I didn’t realize it at the time, but my immune system went right down the toilet the second I went off the Paxil cold turkey. I had a slight sore throat at the time, which, along with the inside of my mouth, immediately became inflamed and incredibly sore. One side of my gums were swollen and painful and my throat was killing me the whole time.
It’s my 3rd day back on the Paxil and most of that has cleared up on its own.
Did anybody else experience flu symptoms while they were trying to get off the Paxil?
Postscript – February 3rd, 2001: The answer to my question, Did anybody else experience flu symptoms while they were trying to get off the Paxil?, was of course YES. I lost count how many people said YES. I experienced then what those who have lived through paroxetine withdrawal call The Paxil Flu. It’s more than a bad case of the flu. It’s closer to a total breakdown of the immune system. Before I began to wean myself off the Paxil, I started to take daily vitamin supplements, B-Complex especially. That, along with as much regular exercise as I could manage, helped keep me healthy for the duration of my withdrawal (which lasted close to seven months).
Tuesday, July 11th, 2000.
Okay, here we go.
I’ve talked to several men and women who have been on Paxil and know exactly what the sexual side effects are (including myself) — and there’s one basic side effect:
Delayed orgasm or inability to have an orgasm, and/or: it takes a lot more work to have an orgasm.
That means — for both men and woman — “it” pretty much requires constant stimulation. Stop for more than five seconds and you’re going to lose it.
For women, it takes longer to get aroused “down there,” and for men it takes longer (and constant stimulation remember) to “get it up.” Sexual function is possible, but it just takes a lot more work (and some practice).
If you have an understanding partner, you can work through it (noting that, regardless, you don’t want to be on Paxil for the rest of your life).
And if you’re alone, you got all the time in the world to figure it out. In a way, being alone is an ideal situation in which to work out the kinks, if you know what I mean. Hope that helps.
Tuesday, July 11th, 2000 (continued).
Today’s my 4th day back on the Paxil and all of my withdrawal symptoms are gone completely.
I’ve been writing a lot. I don’t know what that means, but I’m not complaining because I love writing. I’m still feeling tired like I could use a cup of coffee every half hour — but I’m not drinking any caffeine or anything at all that I could experience withdrawal from; I’ve been on that boat and I’m never jumping back on, I don’t care how big or small it is.
I feel somewhat depressed (or maybe I’m just still upset and shaken from the trauma of the withdrawal), but I’m going to get moving today regardless.
I’ve had to fight off the sleepiness I’ve experienced since going back on the Paxil (with — never forget — the intention of weaning myself off it once things have settled back to normal). I had to fight off the sleepiness during the day so I’d be tired at night and get my rhythms back on track. It seems to be working.
Tuesday, July 11th, 2000 (continued). This is an excerpt from an email I sent to someone who has also gone through Paxil withdrawal:
Most of the stories I’ve read on various bulletin boards are not happy stories, but nonetheless, from what I can tell there are varying degrees of the “brain zaps,” depending on how long someone was initially on the drug, how much they took, and how fast they tried to get off the Paxil. It’s easy to do the math: cold turkey will always put you through hell (not one single person said their cold turkey withdrawal wasn’t a living hell), and the more you take and the longer you’ve been on it, the worse the withdrawal (cold turkey) will be.
My withdrawal was a “horror” like Brando says at the end of Apocalypse Now. And to avoid coming anywhere close to that kind of experience again, I’ll be weaning myself off Paxil very slowly. That means, for me, lowering my dosage from 20mg to 15mg every other day, alternating between 20 and 15 until I’m feeling brave enough to lower it by another 5mg. And then I plan to keep going like that however long it takes. I don’t care about a decreased sex drive or any of the other side effects; compared to the withdrawal I experienced, it’s a walk in the park. I’m not going to try to go off the Paxil for at least another week or two, not until I start feeling completely myself again; then I’ll probably stay there for awhile before I find the guts to try to wean myself off the Paxil. But I’m guessing, for me, starting from the first day I lower the dosage by 5mg, it’ll take me at least three months to get off it.
Your weaning off it may not have to be as slow though. I think you’ll know how fast you can go by how well you’re reacting to the withdrawal. You might want to get through it as fast as you can, but don’t. Take it as slow as you can; that seems to be the least traumatic way for everybody who has successful gotten off it.
I’m not overweight (although I think I may have put on some love handles while on Paxil) and I’m in good heath and good spirits (except for the withdrawal), and my side effects were extreme dizziness and the brain zaps. Sleeping was almost impossible; my appetite was totally whacked; I had flu symptoms; my bowels weren’t very pleasant; and I kept sweating through the sheets whenever I tried to sleep or whenever I walked around for more than 15 minutes. When I wasn’t walking or sleeping, I didn’t sweat. When I did sweat, I stunk like an open sewer.
Wednesday, July 12th, 2000.
It’s true that some doctors are now becoming aware of Paxil withdrawal. I sent an email to my doctor after I experienced the living hell of cold turkey withdrawal, and yesterday he got back to me. I’ve included his reply in this message just so some of you (at least in Canada) can get an idea where general practitioners are in their understanding of Paxil. It seems that those of us who experience extreme withdrawal are learning about it as our doctors are learning, if not faster.
I’ve edited my doctor’s email message here, removing any remarks that could identify him:
I am sorry that you had such a bad experience on stopping the Paxil. You are right when you state that I was ill-informed when I advised you that withdrawal symptoms would likely be mild and transient. I gave you that information based on the year 2000 edition of the Compendium of Pharmaceuticals and Specialties [C.P.S.] which is the information source most widely used by physicians in Canada. You should be pleased to know that physicians are becoming aware of distressing adverse effects of withdrawal from SSRIs such as Paxil… I recently attended a continuing medical education session on the management of depression where the speaker who is a psychiatrist spoke at some length on ‘withdrawal syndrome’ and the need to taper SSRIs rather than stopping ‘cold turkey.’ I plan to report your experience (without identifying you) to the Canadian Adverse Drug Reaction Monitoring Program at Health Canada in Ottawa. Hopefully they will include a warning to Canadian physicians in the next issue of their Adverse Drug Reaction Newsletter.
P.S. (Sept. 2006): I wonder if doctors are any more aware today of the effects of paxroxetine withdrawal. Is the CPS still “the information source most widely used by physicians in Canada”? Is the CPS still heavily financed by the pharmaceutical industry? I wonder how much has changed in 6 years.
Wednesday, July 12th, 2000 (continued).
Today is my 5th day back on Paxil after going through cold turkey withdrawal.
I felt tired yesterday and a little depressed, and then around 10:00pm I seemed to get a second wind (after eating a large supper). But it also left me wide awake and I couldn’t go to sleep, not until about 1:30 in the morning.
I woke up this morning feeling depressed. My dreams seem to have a strong effect on my moods. I’ve never been a morning person, but I hate waking up feeling like I don’t want to get out of bed.
I’m tried to have a good breakfast and put good things into my body (I’m learning more about proper nutrition). Before my going cold turkey, I was feeling really good. No depression at all, positive spirits, no “social anxiety,” no fear underlining my actions. Now, having gone through the hell of withdrawal and then going back on the Paxil at my regular dose, all of those things have been affected. — And I’m am dying for a coffee and a cigarette (but saying no to both).
Wednesday, July 12th, 2000 (continued).
This is still my 5th day back on the Paxil after trying to cold turkey. I’m taking 20mg, my regular dose, but if you can believe it, I’m considering increasing it.
Before I went off the Paxil cold turkey as my doctor ordered, I was feeling fine. Happy, functional, smiling joe. Now my 5th day back on Paxil after my terrible cold turkey withdrawal experience, all of my withdrawal symptoms have long gone, and the headaches and the sleepiness I experienced when I first got back on the Paxil have also disappeared.
All I’m left with now is feeling depressed. My body feels fine, but emotionally I’m feeling depressed and easily saddened.
I plan to wean myself off the Paxil, but I need to feel not depressed before I do that. Right now — or at least today — I don’t have the guts to do anything. And I’m not used to feeling like this. It’s not overwhelming yet, but it is interfering with my ability to do what I want to do; that irrational, underlying fear is there. I’m fine when I do talk to people, but I’m not feeling as brave and easy-going as I was before.
I don’t want to increase my dosage. I’m trying to eat well, trying to get outside, trying to be positive, but I don’t feel like any of it. I’m hoping this will pass. I’m hoping I don’t have to increase the Paxil.
I’ll be making a doctor’s appointment today, but does anyone whose been through this having any suggestions? (I hate this shit!)
P.S. (Sept. 2006): That’s the vicious cycle of Paxil. You take it because you feel depressed or you’re axious in social situations. But once you stop taking it, whatever depression or social anxiety you experienced before doesn’t just come back — it comes back with a vengence. Some call this relapse, but how do you relapse into a condition that is worse than what you started with? This is one of the many ways paroxetine messes with your nervous system. Paroxetine may not be considered officially an addictive drug, but I’ve heard from heroin addicts who had an easier time going clean. (See also the Wikipedia entry for SSRI discontinuation syndrome and paxilprogress.org’s Published Withdrawal Studies.)
Thursday, July 13th, 2000.
Okay, today is my 6th day back on Paxil after my attempt going cold turkey. I still plan to wean myself off it, but not yet.
After going back on the Paxil, all the withdrawal effects disappeared — to be replaced by sleepiness. And then on the 4th day, I felt a tiny bit depressed and still sleepy. On the 5th day, I didn’t feel sleepy, but I felt definitely depressed. And today, the 6th day back on the Paxil, I just woke up and I’m not feeling the depression I felt yesterday (at least not yet; I just woke up 30 minutes ago).
So judging from the first day I went off the Paxil cold turkey (as my doctor ordered), up until today, about two weeks of my life were pretty much a write-off. That’s how much of my time this crap wasted.
But I’m trying not to dwell on that, because that’s depressing. I’m certainly not happy any of this happened.
I have noticed, though, that I feel considerably better after I’ve eaten a good meal. And I’m learning what better food to put into my body to give me more energy, which usually translates into more positive mental energy.
Postscript – February 26th, 2001: Here I am grieving over two weeks of my life which were stolen from me because of my initial withdrawal experience. Considering that the worst of the withdrawal would stay with me for about another seven months, it’s no wonder that my perception of time became distorted.
Thursday, July 13th, 2000 (continued).
I’ve been reading a lot about weaning recently, and everything I’ve read seems to show that decreasing one’s dosage by 5mg can have an immediate effect on how someone feels and the withdrawal they experience — and it’s usually not good.
Lowering the dose by 5mg every other day for at least a week seems to be the least painful way of going about it. It’s like giving your body and your brain a taste of what it’s like every other day. So you get a taste of the lower dose one day, then the next day you (and your body and your brain) can rest on the regular dose. So that gives you a week (or more) to get used to the lower dose. Then lower it again and keep alternating for another week or so — or whenever you feel ready to lower it again.
Doctors right now are learning about weaning as we are; they don’t necessarily know any better. They’re saying lower it by 5mg one week, and then another 5 the next week, but it doesn’t necessarily have to go that way. Your body doesn’t necessarily work on a weekly schedule. You may have to gradually lower it by alternating with the lower dosage, and you may have to take longer than a nicely rounded 7-day week before you begin lowering it further. Everybody is different, so this can’t be an exact science.
If you don’t like how you’re feeling, you can probably make adjustments to how you’re weaning yourself off the Paxil. You may want to talk to your doctor. And don’t let him or her push you around.
If it doesn’t feel right to you, then it probably isn’t. You can dictate your own treatment.
Postscript – February 4th, 2001: When I began weaning myself off the Paxil, I followed the alternating method as described in this post. I didn’t have a bad reaction to this method, but there are people who do. The thing to always remember is that everyone is different. You have to find out what works best for you.
P.S. (Sept. 2006): I’m not sure if this information is out-of-date, if new less-painful withdrawal methods have been discovered. But if anyone wants to leave a comment with more info (if there has been a change in the past 6 years), I’d be more than willing to post it.
Thursday, July 13th, 2000 (continued). In response to a comment on left on a Paxil-withdrawal website that I have since misplaced:
I didn’t have dilated pupils when I went on Paxil. The main thing I felt was a bit of numbness is my hands and a slight lethargy, kinda dragging myself around a little. Which at the time was exactly what I needed because I was going through too much stuff at once and my nervous system was on overload. Feeling the numbing effects of the Paxil gave me something to fight against. Seeing how everything else in my life was out of control and I was beginning to lose my determination, fighting against a little pill was a synch.
Friday, July 14th, 2000.
There is no way I will be silent about what’s happened to me. But right now I’m back on the Paxil only because the brain zaps were killing me. Today is my 7th day back on Paxil (previous to that I was experiencing withdrawal syndrome), and only in the past day or two have I been feeling like myself again.
My plan is to wean myself off the Paxil eventually. If you’ve only been off four days cold turkey, it’s going to worse before it gets better. Some people bear it out; I couldn’t, and you may want to go back on it too — knowing that you can wean yourself off it. And weaning is definitely less traumatic than cold turkey.
Tuesday, July 18th, 2000. An email to a friend:
That withdrawal experience was more traumatic than I realized. It’s left a mark on me. It was like the final straw. I’m feeling better now, but I’m not feeling nearly as good as I was before it happened. I’m struggling through my days in a way that I haven’t for a long time. It took away a lot of my strength. I’m having a hard time really caring about anything anymore.
I’m tired of caring about people, about everything.
I’m pretty damn close to checking myself into a hospital. If anything else happens, I won’t be able to handle it. I need something to go my way soon. This whole year has been too much. I can’t take much more.
Friday, July 21st, 2000.
In my previous posts I mentioned that I’ve been back on Paxil for about a week or so after the hell of going cold turkey, and that, although I’m feeling better than I was during the withdrawal, I was feeling depressed occasionally in a I-don’t-want-to-live sort of way. I’ve been doing my best to walk it off, so to speak, but last night I made an effort to go to bed early and not stay up late as is my tendency.
It made a difference. I slept all night and woke up feeling more myself. I’m not feeling depressed; I can usually tell the second I wake up whether I’m feeling depressed or not and whether I’m going to feel depressed or not. And right now I feel good.
I read that during deep sleep, serotonin production increases. So I didn’t have to take a pill; I just had to get some good, natural, unmedicated sleep. It did the trick. I’m not going to begin weaning myself of the Paxil just yet, but I wanted to mention that a good night’s sleep can make a big difference (for those of you who stay up late and wonder why you’re feeling depressed). I’m going to do more research on this.
I spent most of August 2000 trying to find the courage to begin the process of weaning myself off the Paxil. I was pretty shaken up by my initial withdrawal experience, and I wasn’t looking forward to taking a ride on that boat again any time soon.
I eventually decided to wean by alternating 20mg with 15mg for a week or so, level off at 15mg for another week, then begin alternating between 15mg and 10mg and so on.
The weaning process began during the first week of September. I took my last dose of Paxil around the first or second week of November. The actual weaning process took about two months (which is fast compared to most of the people I know), but the severity of the withdrawal didn’t let up until near the middle of January 2001.