Just joined the board
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SandraLee863
- Posts: 8
- Joined: Fri Jul 22, 2011 12:37 am
Just joined the board
Hi everyone....I'm so glad to have found this board. Also very thankful for the Foundation and all the work they are doing. I had my first RLS episode when I was 9 years old. Didn't know what it was...only that my leg felt funny. I remember opening the window and shaking my leg in the air. My episodes were very mild to almost non-existant until December, 2010 (age 66) when it came in like a flood and set up camp. Went on Gabapentin the end of January and it was great. I developed a problem with my vestibular system a couple months ago and had to stop the gabapentin because it was now causing a drugged feeling..perhaps interfereing with my vestibular problem. I have bad insomnia though and anxiety even though the RLS isn't every night but I do get the weird feelings in my legs and sometimes in my right arm without the urge to move. Dr. put me on Clonazepam for sleep and I've taken it a couple times. I hate these kinds of drugs. We are in the process of moving from New York State to Florida in October. I'm hoping to find a good neurologist down there.
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SquirmingSusan
- Posts: 3028
- Joined: Sun Nov 12, 2006 4:08 am
- Location: Minnesota
- Contact:
Welcome to the forum, Sandra. There is a lot of good information here, especially in the sticky posts at the top of this part of the forum. You may want to look for a link to the Mayo Clinic Algorithm for the Management of RLS. It talks about the most commonly used medications to treat RLS. It's interesting that you doctor started you on gabapentin, before trying you on the dopamine agonists, like Requip or Mirapex. Those are approved to treat RLS, and are usually used first. But there can be issues with those for some people.
If gabapentin worked for you, you might have good luck with Lyrica, although there is no generic for that yet, at least in the US. Clonazepam really doesn't treat the RLS, it just helps knock you out enough that you can get some sleep. Problem is that it has a 30 hour half life and it might knock you out all the next day and then some.
It's great if you can find a good neuro, but do keep an open mind about other kinds of doctors. There are pulmonologists who know a lot about RLS and sometimes even internists and family doctors can be knowledgeable and helpful. It depends more on the doctor than it does on the specialty.
Feel free to ask us anything and we will answer as well as we can. We all have RLS here and know what it's like. It's OK to just rant a bit too. Best wishes with your move in the fall.
If gabapentin worked for you, you might have good luck with Lyrica, although there is no generic for that yet, at least in the US. Clonazepam really doesn't treat the RLS, it just helps knock you out enough that you can get some sleep. Problem is that it has a 30 hour half life and it might knock you out all the next day and then some.
It's great if you can find a good neuro, but do keep an open mind about other kinds of doctors. There are pulmonologists who know a lot about RLS and sometimes even internists and family doctors can be knowledgeable and helpful. It depends more on the doctor than it does on the specialty.
Feel free to ask us anything and we will answer as well as we can. We all have RLS here and know what it's like. It's OK to just rant a bit too. Best wishes with your move in the fall.
Susan
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ViewsAskew
- Moderator
- Posts: 16583
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Welcome Sandra,
Let us know if we can help in any way.
I think Dr Elaty is in Florida....but not sure he's still practicing. He definitely knows about RLS/WED.
Let us know if we can help in any way.
I think Dr Elaty is in Florida....but not sure he's still practicing. He definitely knows about RLS/WED.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.