"On Paxil, I was always sleepy, and would constantly have to take naps."

I spent about 13 months on Paxil and have just switched to Effexor XR. On Paxil, I was always sleepy, and would constantly have to take naps. It was an irresistible urge to lie down and sleep, and really got in the way of a normal daily life. I could no longer drive for more than an hour or two without having to pull over for a nap, and I spent most of my days off on the couch, too tired to go out and do anything. The other main effect I suffered was weight gain -- 30 pounds' worth. Unfortunately, I had mononucleosis when I began taking Paxil for depression, and since mono's symptoms include fatigue and possible weight gain due to less exercise and a slowed-down metabolism, it took my family doctor and myself a long time after my recovery from mono to determine that Paxil might be the culprit causing the weight gain and continuing fatigue. My psychiatrist (who initially prescribed the Paxil and whom I no longer see) dismissed my concerns that I was rapidly gaining weight, even though this had never happened to me before in 30 years. He said Paxil rarely causes weight gain and was more likely to cause weight loss. Skimming through the Disease Management Forum paints a different story. My family doctor has run a battery of tests and ruled out pretty much anything he can think of that would cause this weight gain and fatigue (thyroid, anemia, hepatitis, ect.). That's why he has switched me to Effexor XR, which he says may improve my condition. To be fair, Paxil did get rid of my depression, mood swings and temper, and the only other side effect I experienced, mild sexual dysfunction, was not serious. However, after months of convincing myself that Paxil was a wonder drug (in that it improved my mood so much) I decided I was not willing to continue with the drug if the tradeoff was constant fatigue and steady weight gain. I am now going to Weight Watchers to get rid of those 30 pounds, and after just five days on Effexor, I already more energy and my head is a lot clearer.

-- submitted by anouk, 30

"I am doing OK but I am addicted to Paxil"

I was diagnosed as bi-polar in my second year of university. I had been suffering with it for many years previous but was good at hiding it. I saw a university therapist for 2 years during which time I tried many different medications. I was on zoloft for over two years. But when the zoloft decreased its effectiveness I was eventually put on paxil which helped me remain relatively stable for over 4 years. But when I moved cities and started a new job I was finding that I was getting panic attacks and having major trouble sleeping. I went to this doctor who told me I should try and decrease my dose. When that did not work I went back and he told me to go off the paxil for 2 weeks to clean out my system and then I should try this other drug. I trusted him. I knew I would get off centre if I went off my drug but I thought if I was careful and did not let myself get out of control I would be OK. I can't tell you how wrong I was!

Day one: I was OK. A bit "high" if anything.

Day two: I was very unstable, crying and shaking like a leaf (I thought it would be the worst of it).

Day three: I was violently ill for three hours straight, I could barely see, move, or function. My mood was beyond low, I was almost ready to jump out my window to make it all stop). A friend came over and helped me to calm down.

Day four: I slept for 12 hours straight. I thought I was just tired from the craziness of the night before. But later in the night I became almost hysterical, I could not sit still, I was sick again for hours, and the incredible feeling of dizziness (almost like you are in another dimension). I eventually ended up in the hospital because I was unable to control anything going on with me and I needed to get help before it was too late. They gave me drugs to calm me and put me asleep so I made it through the night but the next day I was no better.

By this time I had this incredible dizziness, nauseousness, exhaustion, and shakiness. I went to this doctor who originally told me to go off the medication. He did not believe me when i told him what I was experiencing and he gave me valium and told me to leave. Obviously, that was of no help. I had to call my parents from out of town to come and take care of me because there was no way I was able to function.

My break came because of my hospital visit. I got a referral to the psychiatric assessment team. I got in a couple days later and they started to try and help me. They agreed that what was going on was a withdrawal from paxil. I was prescribed Wellabutrin. As it is a drug in the same genre as paxil he thought it was stop the withdrawal symptoms. He was wrong. Five days later (I was at home all this time, missing work, hardly able to function), he put me back on 10 mg of paxil (he hoped that it would decrease the side effects while the other drug started working). On the 10 mg of paxil I was OK. I actually felt beter for the first time in weeks. I was still not feeling good but I could do simple things like dishes and walks. But as I tried, again, to wein myself off it, I got worse. Anything under 10 mgs and I had all the effects again.

Eventually, my doctor put me back on paxil (30 mg) and gave me another drug to stop the panic attacks and help me sleep.

SO I am left here. I am doing OK but I am addicted to Paxil. I know the only way I will ever get off it is in a supervised hospital setting (if that will even work?). I hate this feeling of being stuck on it, like I have lost control over a part of my life. (and yes, I still have the other side effects like weight gain, but I have given up worrying about that).

I was interviewed over the phone for the 20/20 story though I never did see if it was aired. (Does anyone have a copy, or was it even shown?)

I would like to participate in some sort of legal action. Not because I want anything, but because I want people to know about this! I want them to know that it is a good drug while you are on it, but not if you ever need to get off it.

-- submitted by LLB35, 24

"I am so dizzy and nauseous all I can do is lie down."

After reading this I am so shocked! I have been dying for over a week, getting worse, trying to figure out what I have and bingo everyone here is experiencing the same thing! I am so dizzy and nauseous all I can do is lie down. I have a 2 year old and a 6 year old and they just don't understand why mommy is sick. I have gone to bed the last few nights at 7:30 and slept till 6:30 the next morning, napping every chance I get just to get some relief. Now I need to decide if I should take another pill and wean myself slowly, instead of the cold turkey I've been trying. I was misdiagnosed with bi polar disorder about two years ago, now they say I am insulin intolerant and have hormonal problems! Paxil and Wellbutrin are the last two drugs I've been on. I've been feeling better, so I quit. If anyone out there has been successful please email me. I'm desperate.

-- submitted by Klhardin, 30

"I was put on Paxil for a panic disorder"

I was put on Paxil for a panic disorder and I have to say it did work well for that. While on Paxil I put on 50 pounds and was tired all of the time. After being on it for 15 months I started to have flu like symptoms, severe joint pain, night sweats and zaps. My doctor ran numerous tests to find out the source and never came up with anything. I started looking on the internet and that was were I found out that it was probably this medication giving me all these problems. My doctor started weaning me off of Paxil last Sept. and was finally off completely in the middle of November. Even though I was down to only 5 mg. at that time the withdrawals were horrible. The first two weeks were the worse with all of the above symptoms I mentioned only magnified much worse and also severe depression which I had never experienced. It has now been about 12 weeks being off of Paxil and it is much better but I am still suffering from some joint pain but nothing like what it was. I have only taken off 10 pounds so far and I am still tired a lot.

-- submitted by Linda, 51

"Diagnosed for bipolar 7 years ago - was put on prozac, zoloft, lithium, depakote, ritalin and other drugs over a four year period"

Diagnosed for bipolar 7 years ago - was put on prozac, zoloft, lithium, depakote, ritalin and other drugs over a four year period - all with side effects. Did the normal 6-8 week withdrawal and became suicidal. Last medication the pdoc gave was paxil. One evening I forgot to take dosage, woke up in the morning with hand paralysis (I am a professional violinist, BIG TERROR). Took paxil and within 20 minutes could bend fingers. Rapid and mixed cycling became worse to the point that I finally told the pdoc I wanted off - he agreed that I was having an extreme reaction to this drug. After a month the depression got worse and then had a major rapid cycling event in an hour - knew that this drug was bad news. That night began night terrors, slept 1.5-3 hours per night for a month. GI tract stopped functioning, had to eat rice, broth, steamed veggies. If I ate anything solid, it came through the intestines solid (sorry for the graphic detail but true). Would wake up in the middle of the night in hysteria. Then my legs would feel as if they were hooked up to an electrical battery - could feel energy going down legs like what you would see in the old Frankenstein movies. I knew this was dangerous because my mother, who was also bipolar, died in withdrawal from other medications in the early 80's and had the same reactions the month before she died (heart stopped from exhaustion). Worst part was, because of exhaustion, lost temper with colleague because of my terror and his insensitivity to how sick I was (he had been support person). He filed grievance, suspended from work, had breakdown while pdoc out of country. This was all 2 years ago in February. I am just now starting to be "normal" though the pdoc now has diagnosed me as having Postraumatic Stress Disorder from what I experienced. I am using bodywork/massage therapy, polarity therapy, ayurvedic medicine all under the supervision of the same pdoc. He has told me that I am doing incredibly well. I actually think that I am LESS depressed than ever!

-- submitted by Orty, 47

"It was like electricity running through my body, and major anxiety attack and hyperventilation"

I have taken Paxil for 5 years and before that Imipramine for 8 years for a severe anxiety disorder. I was completely house bound, I didn't go out of my home for 6 months. I went to see a psychiatrist as this disorder ran in my family, and was put on Imipramine It was amazing how fast and well this medication worked. I was back to my normal self within a week. Over the next 5 years I would still have episodes of anxiety so I went to a clinic in California (I am from Washington State) that I saw an advertisement for. They were successfully treating anxiety patients by figuring out what chemical it was your brain was not producing enough of, in turn causing anxiety. I tested several different drugs and Paxil worked the best for me. It wasn't until about 3 years after that that I began hearing all the side effects of this drug. I never realized I had side effects until I heard what they were. I am always tired, I mean I could sleep 12 hours and still feel exhausted. I also gained alot of weight and basically had no energy at all. I decided I wanted off the Paxil and I new you couldn't just stop all at once. I started out cutting my dosing from 20 mg to 10 mg for about 2 weeks then I went to 5 mg for a week. This is when the withdraw hit me! It was like electricity running through my body, and major anxiety attack and hyperventilation. Of course this freaked me out and I went right back to 20 mg. I tried 2 more times unsuccessfully. Currently I have cut my dose down to 10 mg w/o any side effects, it has been about 2 weeks since I did it. I did have a period in which I felt extremely agitated, like I was going through major withdraw. This lasted about a week and now I feel fine. My plan is to stay at 10 mg's for 3 months and then go to 5 mg's for about 3 months and then completely go off. I think the main thing I realized is that no matter what you are going to have withdraw symptoms of some sort when you quit taking his medication, especially for the length of time I have. You have to mentally prepare yourself for it and not panic when you start feeling weird things happen. I find that when I start feeling anxious or panicky if I just stop whatever I am doing and completely relax my body and take deep breaths that I can usually deal with it. Another thing to tell yourself is that this isn't gonna kill you or injure you it is temporary and you can overcome it, lot's of self talk is very important.

-- submitted by Sara, 30

"I lost weight on Paxil and my sex drive went through the roof."

I was one of the first to post here so I thought I would comment on some other posts.

I went through major twitching episodes which lasted OVER A YEAR (I was on SSRI's over a 4 year period). Eastern medicine (such as Chinese and Indian [ayurvedic]) explain that the drug may be out of your blood but not out of the organs. Yes 4-6 weeks to be able to switch drugs but the remainder stays in your liver, spleen, kidneys, and BRAIN for up to a year. Therefore, the longer you are on these drugs, the more ingrained they become with the organs in your body and the longer it takes to get out.

My experience with Paxil was atypical. I have been turned into a rapid cycling Bipolar because of the SSRI's. I lost weight on them and my sex drive went through the roof. I feel like I am getting back to normal (after TWO AND A HALF YEARS since my last dose). Yes, I am a bipolar controlling it without medications. What am I using? Polarity Therapy, Ayurvedic medicine, Therapeutic Body Massage (this is INCREDIBLE for those energy twitches and headaches), and orthomolecular medicine (see this month's "Natural Health" magazine for the article on Margot Kidder for further information.

As in other posts, remember that your doctors can't POSSIBLY know everything about everything. They are seeing patients all day and don't have the time to do updated research on EVERY medication that is out on the market. It is up to US to be vigilant and tell our doctors about things like this web page to get the word out. Don't let a doctor talk you out of what your intuition is telling you. THEY are NOT the ones experiencing what you are. You know what your body did before you were on this medication and it is up to you to insist that there is a problem.

-- submitted by Orty, 47