New on here

Whether new to RLS/WED 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.
legsandsyndrome
Posts: 7
Joined: Sun Jul 17, 2016 8:39 pm

New on here

Postby legsandsyndrome » Fri Jul 22, 2016 12:30 am

I'm new, and here is some of my background: I'm a 63 y.o. man. I started having RLS symptoms about 6 or 7 years ago, along with peripheral neuropathy. I am taking Gabapentin 1200 milligrams per day, but that is doing nothing for my RLS symptoms (and not too much for the neuropathy, either). The RLS gets me up almost every night. I tried ropinirole, and the first night on it, I got up to go to the bathroom, felt very nauseous, and on my way back to bed, fainted, and fell flat on the floor. Needless to say, that was the end of the ropinirole use. I am exploring the possibility of using medical marijuana for my neuropathy. I am hoping that it will also help with the RLS. Has anyone had any similar experience, or advice? Thanks.

Rustsmith
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Location: Pueblo, Colorado

Re: New on here

Postby Rustsmith » Fri Jul 22, 2016 1:33 am

Welcome to the group. First, your reaction to ropinirole is not uncommon. You might ask your doctor if you can try pramipexole instead. It might do the same thing, but it is worth a try.

As for the gabapentin, I am a 64yr male and use 900mg to be able to fall asleep. Although some people report that it helps with their RLS urges, it does not have any benefit for me. One thing to know about gabapentin is that it is only adsorbed in a small length of the small intestine. If you take it about the same time as a large meal, it may go flying through that section without being adsorbed. An alternative is Horizant. The modification to Horizant allows it to be adsorbed through both intestines, so it works more efficiently. Once in the bloodstream, Horizant becomes gabapentin.

As for medical marijuana, we have had some very long discussions about its benefits, the benefits of the various types (THC vs CBD), and smoked vs. edible vs. tinctures. If you type marijuana in the search box in the upper left corner, you will find quite a bit of useful discussion. Personally, I would only be getting 3-4 hrs of sleep each night without it.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: New on here

Postby ViewsAskew » Fri Jul 22, 2016 3:51 am

Some of us seem to be very sensitive to the dopaminergic drugs, such as ropinerole. Initially, I could only take 1/4 of what my doctor prescribed without pretty awful side effects. You may be able to take it, just in a much smaller dose. I used pramipexole and broke a tablet into 1/4s. Not sure how much you were prescribed or if you could break it. Also, nausea is common for some of us initially. It often goes away.
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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Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: New on here

Postby Polar Bear » Fri Jul 22, 2016 5:41 pm

My first thought was.... I wonder what dose you were started on. With ropinerole and pramipexole it's best to start on the very lowest dose imaginable and then titrate upwards to a level that works for you. This helps ease any possible side effects. Perhaps you started on a too high dose.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

legsandsyndrome
Posts: 7
Joined: Sun Jul 17, 2016 8:39 pm

Re: New on here

Postby legsandsyndrome » Fri Jul 22, 2016 9:02 pm

ViewsAskew wrote:Some of us seem to be very sensitive to the dopaminergic drugs, such as ropinerole. Initially, I could only take 1/4 of what my doctor prescribed without pretty awful side effects. You may be able to take it, just in a much smaller dose. I used pramipexole and broke a tablet into 1/4s. Not sure how much you were prescribed or if you could break it. Also, nausea is common for some of us initially. It often goes away.


This was how my neurologist (or NP: I don't remember who actually wrote the script) prescribed the ropinerole for the very first time: "2 mg tablet. Instructions: 1-2 tablets at bedtime." And I thought at the time, "Hmm, I better only take 1 tablet." I had not read anything about this drug beforehand. Subsequently, I read that a starting dose is at most 0.25 mg. I pointed this out to the NP at my MD's office, and got no response from her. Seems like incompetence or carelessness to me, and I'm wondering whether I should ditch this MD. I mean, I could have cracked my head open on the bathroom floor. What do you think?

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: New on here

Postby ViewsAskew » Fri Jul 22, 2016 9:31 pm

In our experience here, many MDs are not that well-versed in dealing with RLS. They know the generalities, not the subtleties or specifics. Only the docs who deal with a lot of cases have learned that some of us are sensitive, so start lower! Many people have no issue with the larger dose - so they might not every know that some people would find it very problematic.

Your NP is surely not likely to know much unless there is a patient in the practice that has taught the NP more about it. In many cases, this is fine. It's only when there are difficulties that this is an issue. Many of us find that we end up being our own doctors, in effect. Dr. Buchfuhrer has been answering patient questions for at least ten to fifteen years - we often use his advice to help inform our doctors or do things on our own.

And, most of us by the second edition of Clinical Management of RLS - Lee, Buchfuhrer, and Hening.
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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