There IS hope ...

[stellamaz]

Hello everyone. I’m new here, but wanted to post my story as maybe a way to give hope to someone out there ...

I am a 57-year-old woman. I started taking Paxil in April 2006 for the first time to treat anxiety and depression. My initial does was 10 and it was eventually ramped up to 20. It took about 6 weeks to start working ... once it kicked it I actually starting feeling really good, but the side effects - weight gain and hair loss - were extremely distressing to me.

By Spring 2007 I decided I couldn’t deal with the side effects anymore; I had also done a lot of research on the drug in the meantime and wasn’t liking anything I read about it. My doctor - a GP - didn’t know anything about the drug, really, and told me to just “quit taking it over a week or so and you should be fine.” I knew better, based on what I’d been reading so I developed a really slow taper for myself, which lasted about five months. I remember being extremely jittery, and I did have the “zaps” for a few weeks; I didn’t let them worry me, because I was expecting them. By mid-summer 2007 I was completely off Paxil. Unfortunately, in September of that year I developed chronic, constant, low-grade headaches that were with me 24/7. Having never been a person who’d had headaches in my life - and being over 50 years old at the time - this totally freaked me out. I was convinced I had a brain tumor. Unfortunately, one of the features of my anxiety is obsessing over possible dire medical events, so this was not surprising. I also wondered if they might be an after-effect of going off Paxil. Thinking that maybe all I needed was a vacation, I went on an already-scheduled trip to Canada in October of that year; nothing changed. When I got back I went to my doctor and reluctantly asked to be put back on Paxil ... and also asked for a brain CT (which, of course, came back completely normal.)

So, I was back on the Paxil wagon. To my distress, my brief time off the drug didn’t do anything to reverse the side effect of weight gain (about 15 pounds); the hair loss did get better. Once GOOD thing about being on the drug during this time period was that it coincided with entering menopause, and it completely halted the terrible hot flashes I’d been having, which made me very happy. It also made me feel pretty darn good again.

But, alas, I couldn’t deal with the weight gain so in the summer of 2008 I weaned myself off again, without any medical assistance (not that I’d really had much in the first place.) It actually went pretty well ... I followed the same regimen I had before (which, as I recall, was to take my regular dose for six days, a slightly reduced dose on day 7 ... then regular dose for five days, reduced dose for two, etc., until totally on the reduced dose; then I stepped it down from there in the same manner, over several weeks.)

Then, in Fall 2008 my husband was diagnosed with prostate cancer and my medical anxiety went sky high again; back to the Paxil I went. I was pretty disgusted with this, but as before it did help and I was feeling good and in control after about 6 weeks. (He ended up having surgery and now seems to be fine.) But, there was still that weight gain that I wasn’t happy about (now up to about 20 pounds) and as I’d been a slender person all my life until I started taking Paxil I’m almost sure that was the main - if not the only - cause of it.

So ... in early 2009 I decided I wanted to be rid of Paxil forever. I started tapering in February of that year, and really stretched it out ... I took the last dose in mid-July, and that is - to date (fingers crossed) the LAST dose I ever took.

Now, almost three years later, I feel great without Paxil ... and with no noticeable after-effects. I have even finally managed to take off the excess weight, but I will say that it was extremely difficult to do that - it just wanted to hang on and on. I’ve even had a few “minor issues” arise during that time which I think before would have sent me back to Paxil, but I’m determined to remain strong, sane and OFF PAXIL.

I guess my point in writing this long tale is to let whoever might be interested know that it may be possible to get yourself off this drug for good. I know everyone is different, and I won’t say it was easy; I can say that today I feel great, and like “me” ... which I never felt like while taking Paxil.

[medsrnot4me]

Thanks so much for taking the time here to post your amazing success story! I am so glad you are doing so well post-Paxil. Is there anything you would recommend that you felt helped you with your taper and with staying off of the drug this time around?

Michele

[Shiloh1]

Thank you! yes-did you have any bad anhedonia/depression symptoms after your taper?

[Neerosis]

Encouraged! Thanks!

[lmac]

Its so great to hear success stories.
I'm curious also if you had any bouts of depression/mental symptoms.

[obliviousjo]

Thank you!!! So needed that today..Please let that be all of us very soon Thanks again for sharing...Paying it forward

[aberdeen]

That is wonderful! Thank you so much for taking the time to do this for everyone here. It really REALLY helps!!! How did you feel after you got off completely? How were the few months after you finished, and if you suffered, when did you feel really good again?

[stellamaz]

Thanks so much everyone, for your replies and questions. I know what a struggle it is to get off this drug - or even to WANT to get off it (because I do have to say that it really did work for me and in many respects I felt great while I was taking it; not exactly like myself, but so much better than when I had the issues that caused me to take it in the first place.)

I didn’t mention that in addition to wanting to get rid of the weight I piled on while taking Paxil, another reason I wanted to get off of it was that I am the type of person who resists taking any medication. For that reason I did try cognitive behavioral therapy (CBT) first, but I tend to be a cynical person about that kind of thing and I think the reason it did nothing for me was that I just never believed it could work.

All three times I tapered off the first couple of months were, to put it bluntly, sheer hell. I didn’t have a recurrence of depression - which is what I feared more than anything - but most of the time I felt like I was having an unpleasant out-of-body experience. Especially moving my head at all, it felt like my eyes were trailing behind the movement of my head. It’s hard to explain, but it was almost a dizziness or vertigo, on a horizontal plane. Also, in my case and at my age, my hot flashes returned with a vengeance, which was extremely distressing, but at least I knew what they were and that they would pass. The other problem gradually lessened as well after a couple of months and gradually got better.

I honestly think I would have succeeded in staying off Paxil the first time if it hadn’t been for the headaches ... and I now think the headaches were actually caused by the withdrawal, because when I went back on Paxil they disappeared almost immediately.. I wish I would have stayed strong and off Paxil after the CT results came back clean and just toughed it out, because I now know they would have eventually gone away, but the situation threw me back into a major anxiety episode and I felt that Paxil was my only way out at the time - because, as I said, I really did feel good in many ways while I was taking it.

One thing that really helped me get through the tapering and withdrawal the third (final) time was reading other folks’ success stories (which is why I decided to write my own.) When I was feeling weak and thinking I just couldn’t do it I would pull up some of my favorites on my computer (I had them all bookmarked) and read them for motivation.

I didn’t really say in my initial post that taking the excess weight off was quite a struggle. I was hoping that since Paxil had caused it, it would just fall away once I quit taking it, but no such luck. After seeing no results with anything I tried to do personally I eventually joined a gym and signed up for some personal training sessions. Even though I am cynical, I do think that fate sometimes steps in on our behalf, because the trainer I hired happened to be someone who had been through many of the same problems I had, and had a special interest in helping people handle depression through exercise and activity rather than medication, and he designed an activity program for me with that in mind. I had read that this was possible but always laughed it off because, after all, when I was depressed the last thing I felt like doing was exercise. I never knew that exercise and activity might work to keep the depression from happening in the first place and, for me at least, it does seem to be working now. It also (along with some minor dietary changes) helped me get back to my pre-Paxil weight over the course of about a year.

Now, almost three years since my last Paxil dose, I have to say that I feel fantastic ... almost 100% of my pre-Paxil self. The only real difference is that my sleeping patterns have been, I believe, permanently altered (but I do realize this could also be a function of my age.) I have always been a night owl, but it’s really that way now. I just don’t seem to require much sleep; 5 or 6 hours a night is about what I get, and all that I need. Also, I do still have to take Xanax whenever I fly (usually 3 or 4 times a year), because it’s the only thing that allows me to believe the people in the cockpit know what the hell they’re doing (apologies to any of you who may be pilots or navigators.)

I can’t say that I wish I’d never taken Paxil because it really did work for me. However, if I am ever - God forbid - in a situation again where I feel the need for better living through chemistry, I will take something else; it’s just too darn hard to get off this drug. I’m really hoping that my new active lifestyle will ward off the need for medication for any such future problems. And, I want to say that I'm not an annoying "exercise Nazi" or anything; it's just a moderately active lifestyle that keeps me moving and focusing on how I can make myself feel and look better without chemical assistance; I actually enjoy it, but it was a long road getting there.

[aberdeen]

Originally Posted by stellamaz

(because I do have to say that it really did work for me and in many respects I felt great while I was taking it; not exactly like myself, but so much better than when I had the issues that caused me to take it in the first place.)
I can’t say that I wish I’d never taken Paxil because it really did work for me. However, if I am ever - God forbid - in a situation again where I feel the need for better living through chemistry, I will take something else; it’s just too darn hard to get off this drug.

I could write the very same thing about Effexor. I hate meds, barely take Tylenol for headaches, don't bother with cold meds, I gave birth med-free....but the depression I felt when I had post partum depression was so black and awful. I pushed on for 8 months with no relief before I finally broke down and started Effexor and it worked like a miracle. I wouldn't say I regret that choice, because it worked with almost no side effects and I was then able to finally fully enjoy life with my little baby boy. But now that I know more, I would not take it as long, and at the first sign of poop out I should have tried a slow taper. Anyway thanks for sharing your story, it probably helps more people than you know!