I have had rls since childhood but didn't know what it was. At age 52 it has gotten worse and I found out about rls a few moths back when Requip was recruiting patients for their tests on tv at 4am.
Like many have already expressed, I am deeply grateful to have a name for and some understanding of my condition.
I have been on Effexor for a couple of years (doing very well except for huge weight gain) and when I tried to cease taking it, the rls became unbearable: lying-in-ant-bed prickling and 1000-mile-trudge ache. While looking for something to help me get through weaning off the Effexor, I checked out the drug info on Levodopa and noticed that it said not to eat beans while on the drug and also I saw that fava beans contain high levels of levodopa itself.
I began a search to identify what I ate the nights I had bad symptoms and what I had when I had few or no symptoms. Black beans seem to be the magical fruit (sorry, not funny - sometimes I am punchy from not getting enough sleep). So far I have not been able to wean off the Effexor. I tried Trazadone which has worked for other people and it made it worse.
So, my contribution is that half a can of black beans at bed time and half a capsule of Effexor are working ok for me (not perfectly but life without them is unbearable).
Also, related to posts elsewhere on this site: I slept beautifully while on HRT, but for other reasons I cannot take any more hormones of any kind.
I am eager to what the results might be with Requip - that would be for another area of the forum.
black beans / Effexor / HRT
Hmmmmm... that's all very interesting, Virginia. Thanks for sharing that. I'm not sure if I could tolerate beans every night due to some other medical problems, but what a fascinating experience. Also interesting about HRT.
I love to hear people's experiences. Just more information for us -- and hopefully researchers-- to consider and use to figure out what to do about RLS.
To you and others.... just a reminder, there is a survey you can take that will include your experiences in data our beloved member Jumpyowl is compiling to present at the RLS conferences. Can't recall the name of the link, but if you look, you can probably find it....we call for participation every month or so.
Please take time to take the survey if you haven't!
Sara
I love to hear people's experiences. Just more information for us -- and hopefully researchers-- to consider and use to figure out what to do about RLS.
To you and others.... just a reminder, there is a survey you can take that will include your experiences in data our beloved member Jumpyowl is compiling to present at the RLS conferences. Can't recall the name of the link, but if you look, you can probably find it....we call for participation every month or so.
Please take time to take the survey if you haven't!
Sara
-
resty
i understand
yea i take effexor and it helps me alot ive been trying magnisumwith calcium and it worked for a long time but know my rls is geting worse and its not helping so well iam also trying to research for meds that help there is so much meds out there what is good to try and whats not is so hard to know.Im up late tonight beause my rls is bad so i had to get up to let my husband sleep, and with trazadon it will make you sleepy but yea make it very more sevier any drugs it its catagory tend to worsen the rls symptoms. 
-
Barb L.
Effexor
I took Effexor for depression for about a year--found it not very effective--and when I tried to go off of it, it was incredibly difficult. The body gets physiologically addicted to it. I ended up weaning myself off of it very gradually, until I was literally taking just a grain of it. And it was still awful. I had to grit my teeth until it was completely out of my system, and in the meantime, developed shingles because of the detrimental effect it had on my immune system. If it's working for your depression and/or RLS, fine. But I don't think it should be prescribed without a clear warning about the side effects of going off of it.
I HAD BAD WITHDRAWAL FROM EFFEXOR, TOO
It's Jam
I just noticed your post regarding your problem weaning off of Effexor. Actually, I was alerted by Sara, a good friend of mine, who knew about my situation. I was given Effexor XR by my former neuro, because he thought it would help with fibromyalgia, which he had dxed me with late last fall. I had an adverse reaction to the drug--panic attacks, severe mood swings, hives--so he had me wean off of it--slowly. I had only been taking Effexor for probably 6 weeks. Going off of it was horrible. All of this occurred in January, so the details are a bit fuzzy (a lot of water has gone under the bridge since then--sorry!). But, I CAN tell you that it was BAD.
He then prescribed Paxil. By then, I had begun reading about the drugs he was prescribing to me. How interesting to find out that Paxil and Effexor were both SSRI's, drugs which RLS'rs should not take (they exasberate our symptoms) and, in my case, Paxil just started where Effexor left off. I once again began getting hives and the other problems started again, also.
I didn't mean to go about my other problems. I just wanted to let you know that I, too, had problems with Effexor and, as I said, I wasn't on it for that long. Oh, I also gained about 44 lbs. in approximately 3 months.
I have come into contact with quite a few people who had adverse reactions to Effexor AND have had the same problems weaning off of it.
Good luck!
Jan
I just noticed your post regarding your problem weaning off of Effexor. Actually, I was alerted by Sara, a good friend of mine, who knew about my situation. I was given Effexor XR by my former neuro, because he thought it would help with fibromyalgia, which he had dxed me with late last fall. I had an adverse reaction to the drug--panic attacks, severe mood swings, hives--so he had me wean off of it--slowly. I had only been taking Effexor for probably 6 weeks. Going off of it was horrible. All of this occurred in January, so the details are a bit fuzzy (a lot of water has gone under the bridge since then--sorry!). But, I CAN tell you that it was BAD.
He then prescribed Paxil. By then, I had begun reading about the drugs he was prescribing to me. How interesting to find out that Paxil and Effexor were both SSRI's, drugs which RLS'rs should not take (they exasberate our symptoms) and, in my case, Paxil just started where Effexor left off. I once again began getting hives and the other problems started again, also.
I didn't mean to go about my other problems. I just wanted to let you know that I, too, had problems with Effexor and, as I said, I wasn't on it for that long. Oh, I also gained about 44 lbs. in approximately 3 months.
I have come into contact with quite a few people who had adverse reactions to Effexor AND have had the same problems weaning off of it.
Good luck!
Jan
No one is alone who had friends.
This is interesting. Effexor is an anti-depressant yes?
It's most definatly interesting, and I think this is of note just how much RLS confuses the heck out of people. A while back, I was skimming through websites about RLS, and the types of medications that seem to work on it. I found several conflicting reports on anti-depressants and such. One website says they should help, the other clearly says "Stay away from Anti-depressants and nausea medication' (which is rather annoying if you are nauseated when you have a bad episode of RLS)
I've also read that staying away from caffiene is supposed to help with RLS. I'll tell you now, I stopped any caffiene intake for more than a month, and noticed no decreases in my RLS. I've even heard that taking iron supplements are supposed to help, but I have yet to test this. (although I'm sure some of you have.)
It's most definatly interesting, and I think this is of note just how much RLS confuses the heck out of people. A while back, I was skimming through websites about RLS, and the types of medications that seem to work on it. I found several conflicting reports on anti-depressants and such. One website says they should help, the other clearly says "Stay away from Anti-depressants and nausea medication' (which is rather annoying if you are nauseated when you have a bad episode of RLS)
I've also read that staying away from caffiene is supposed to help with RLS. I'll tell you now, I stopped any caffiene intake for more than a month, and noticed no decreases in my RLS. I've even heard that taking iron supplements are supposed to help, but I have yet to test this. (although I'm sure some of you have.)
RE Effexor and Anti-Depressants
It's Jan
Yes, Effexor is an anti-depressant and anti-depressants exacerbate RLS. At the time my former neuro prescribed Effexor, I was, quite frankly, unaware what Effexor was. He prescribed it for fibro. He didn't tell me what it was, and I trusted him. It was later, when I began reading about the drugs I was taking, that I found out it was an anti-d. I do not drink caffeine and have not for years. I was only on Effexor for a little under 3 months.
Jan
Yes, Effexor is an anti-depressant and anti-depressants exacerbate RLS. At the time my former neuro prescribed Effexor, I was, quite frankly, unaware what Effexor was. He prescribed it for fibro. He didn't tell me what it was, and I trusted him. It was later, when I began reading about the drugs I was taking, that I found out it was an anti-d. I do not drink caffeine and have not for years. I was only on Effexor for a little under 3 months.
Jan
No one is alone who had friends.
One thing I did notice though, was that there were certain anti-depressants that were listed that were supposedly ok to take with RLS. (There were 3 listed, Wellbutrin being one of them.)
I personally don't know, but I do have Wellbutrin floating around the house, perhaps I should find out if it will make my RLS worse or not?
I personally don't know, but I do have Wellbutrin floating around the house, perhaps I should find out if it will make my RLS worse or not?
-
Penguinrocks
- Posts: 703
- Joined: Thu Mar 17, 2005 6:03 pm
- Location: Massachusetts
- Contact: