Paxil Free

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.

Thursday, September 28th, 2000. In response to a post at 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 incase 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.

Someone said, “I guess what is so frustrating is I can’t stand it that this drug has so much control over my body.”

You can put that on the top of my list too. You spend a good chunk of your life working out all the kinks of your personality, learning what works for you and what doesn’t, until you get to the point where things are pretty good. You’re more or less doing what you like and you’re pretty much a self-actualized happy camper. Some people even look at you with admiration. It was a bumpy ride, but you finally got it together and you know it, and it feels good.

Then you take a little pink pill called Paxil — and you can take the dignity of everything you’ve accomplished in your life and kiss it goodbye. The foundation of your personality turns to sand. Everything goes to hell and everyone sees you at your worst.

It’s what I hate the most. Absolutely the most. I’m not sure if I could live through something like it again. There’s no dignity to any of this.

Just had to say that’s one thing I really hate. Can I hear an Amen!

Response:

I started out at 2.5mgs the first two weeks, 5mgs the next two weeks. From the first day, I didn’t like the way I felt. Everything seemed unreal and unworldly. The doctor said the side effects would pass and that I should up my dose to 10mgs, which I did for the entire next month.

What side effects did I have? All of them — dry mouth, dizziness, urination problems, nightmares, zaps, brain slosh. You name it. When I again complained to the doctor, I was told I wasn’t even taking a “therapeutic dose” and that I really needed to take 20mgs.

For the third month, I did take 20mgs, but the problems did not go away — in fact, they intensified, so I stopped taking it altogether without a clue as to what lay ahead. Five days later, the withdrawal hit hard and fast, and I was completely debilitated with dizziness, zaps, vertigo, etc. My doctor was no help at all, insisting still that I should continue with 20mgs, or even go higher.

I was so ill that I called the pharmacist and he said I would have to go back on at least 10mgs and wean from there, which is what I did. I took 10mgs for a week or so, then went down to 5. At that point, I was shaving the tablets with a razor blade every day. When I got down to about 2.5mgs (where I stayed for a month), I went cold turkey. But the side effects persisted, lessening in some respects, but never completely going away. They gradually diminished over the next two years, but I’m still left with a host of weird glitches, word retrieval problems and memory loss being the two most debilitating, as well as light and sound sensitivity.

I thought that this was just me — until I really began to network with others whose problems also had not subsided, even though they had been off either Prozac or Paxil for months, and sometimes years. While most people eventually fully recover from the experience, there appears to be a segment of SSRI users whose recovery takes much longer. How long? There’s no way to know. There are people on the Prozac board who claim it took them five years to get back to their old selves. And this is my big problem with these drugs. There just doesn’t seem to be any way to predict who will have no withdrawals, who will have mild withdrawals, and who will have protracted symptoms. It appears to be totally unrelated to dosage, or length of time on the med. I’m really happy that these drugs have helped many people, but if I knew then what I know now, I would have never taken it at all. Nor would I wish my experience on anybody.

So, I guess it comes down to that saying “caveat emptor” — buyer beware [although we often place too much trust in our doctors for them to be aware, when clearly they're no more aware of the dangers than we are]. Everyone who takes Paxil (especially) has to weigh the short-term benefit against the possible eventual withdrawals. And this is something that the doctors don’t prepare you for — at least mine didn’t, and if you’ve read other stories, there is a haunting similarity.

P.S. (Sept. 2006): The added words in square brackets after “buy beware” are mine. Before I’m done re-posting Paxil Free, I think I’ll have to expand the Basic Facts list to include word retrieval problems. The person who responded wrote: “[The withdrawal effects] gradually diminished over the next two years, but I’m still left with a host of weird glitches, word retrieval problems and memory loss being the two most debilitating, as well as light and sound sensitivity.” As I mentioned on the first day of my re-posting of all this stuff, it’s been 6 years now and I still have problems expressing myself because I can’t think of the word I want to say — and I’m not the only one to experience these “glitches” (which is a good word for it). I also confuse written words so often these days that it’s embarassing. Words like your and you’re; were and we’re; there and their. I have completely given up on ever trying to remember whether I want to use affect or effect. I’ve resigned myself to the fact that I’m going to get it wrong at least half the time now. It’s kind of depressing, especially for anyone who writes for a living… Is it possible to retrain my brain, to relearn all these words again? What the hell happened there? How did so many words and their meanings get wiped from my memory? Kind of disturbing, isn’t it?