New: questions for others suffering from RLS

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
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crystalwater
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Joined: Wed Sep 16, 2015 9:16 pm

New: questions for others suffering from RLS

Post by crystalwater »

I'm new and restless leg syndrome is driving me crazy. I'd say it is pretty severe. And the doctors have yet to be able to prescribe me a med that helps. The specialist said I could take up to 600mgs of gabapentin. Today this has made me very very groggy. I have a phone consult with this doc again next week. Besides ropinerole and premipaxole has anyone had good luck with any other med? The doctors keep telling me they're running out of options for me. Has anyone tried Sensenate (or something spelled close to that)? I'm dying over here and no one seems to be able to help.

ViewsAskew
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Re: New: questions for others suffering from RLS

Post by ViewsAskew »

So sorry you're having problems.

Let's start way back when. When you took ropinerole and pramipexole, how much did you take and what happened?

Gabapentin is usually started at 300 mg and then increased every few days by 200-300 mg. The max dose, if I remember correctly, is around 2700 mg (per day - (up to 900 mg at a time). it absolutely can make you drowsy in the beginning, but that usually wears off - it's one of the reasons to start at a lower dose.

Also, tell us how you experience RLS/WED. That might help us better help you.
Ann - Take what you need, leave the rest

Managing Your RLS

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crystalwater
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Re: New: questions for others suffering from RLS

Post by crystalwater »

My RLS feels like my leg/calve muscle is constantly buzzing. Like someone has taken my legs and is shaking it very vigorously. Or like a cellphone is stuck in my leg on buzzing. It happens during the day and is worse at night when I'm trying to fall asleep. I get pasted it during the day when I feel it by bobbing my leg or foot. And now I can't seem to stop it or I'll feel the buzzing. Sometimes I feel it up my leg all the way to my hip. I also feel it sometimes in my bottom lip.

ViewsAskew
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Re: New: questions for others suffering from RLS

Post by ViewsAskew »

And, what happened when you took ropinerole and prampiexole? How much did you take?
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.

Polar Bear
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Re: New: questions for others suffering from RLS

Post by Polar Bear »

Also, have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipezole or ropinerole. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

crystalwater
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Re: New: questions for others suffering from RLS

Post by crystalwater »

I don't remember what dosages of ropinerole I have been put on. I had my iron levels checked and they were low. 30. I have been taking iron Suppliments daily with vit C for absorption. This has not helped either. Unless you consider that I now feel it majoritively through my right leg instead of my left.

ViewsAskew
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Re: New: questions for others suffering from RLS

Post by ViewsAskew »

Help us understand what happened when you took ropinerole and pramipexole. Why didn't they work for you?
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.

Gabby
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Re: New: questions for others suffering from RLS

Post by Gabby »

How much iron should I be taking?

Rustsmith
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Re: New: questions for others suffering from RLS

Post by Rustsmith »

The answer depends upon how much more iron your need. If your ferritin is close to 100 or you just need to maintain where you are, then one tablet of 325mg of iron sulfate along with a vitamin C tablet taken on an empty stomach once a day should suffice. If you have a long ways to go before you get to 100, then you might want to take this combination 2 or 3 times a day. But since you can over do it with iron, this is probably something that is best for you to work out with your doctor.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.

ViewsAskew
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Re: New: questions for others suffering from RLS

Post by ViewsAskew »

To add to what Steve said about iron, do make sure you have both a serum ferritin AND a hemoglobin test. Without knowing the results, you could actually have too much iron in your body and harm yourself if you took more.
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.

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