Undiagnosed RLS

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luciekitty04
Posts: 2
Joined: Mon Sep 17, 2018 10:59 pm

Undiagnosed RLS

Postby luciekitty04 » Tue Sep 18, 2018 12:13 am

I have sort of self diagnosed myself with RLS. Here is a little history: In 1998, I was diagnosed with a spinal cord tumor. I have had three surgeries to remove it. I remember being prescribed Baclofen and Gabapentin because you couldn't touch my legs without them going through the ceiling. Years later, I was diagnosed with Trigeminal Neuralgia and was prescribed Gabapentin and took it only as needed. Now, I have started to experience the symptoms of RLS. It is only at night, but not every night. I still have my prescription for Baclofen and Gabapentin and decided to try the Baclofen. The first night I took it I didn't experience any symptoms. This may have been because of the medication or not, I don't know. But the second night I took it, I still had restless legs at night. I am wondering if anybody who knows more about RLS has any advice for me? The Baclofen is 10 mg and the first night I took one before bed, but since it didn't seem to work, the second night I took two and didn't have issues except for the next morning, I was sick and nauseated. Thanks for your help.

Rustsmith
Moderator
Posts: 3350
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Undiagnosed RLS

Postby Rustsmith » Tue Sep 18, 2018 3:10 am

First, for some people, RLS is something that does not happen every night. One of the questions that is used to score the severity is how many nights per week that you experience it. The questions on the "official" diagnosis questionnaire can be found athttp://irlssg.org/diagnostic-criteria/

Second, Baclofen is not a medication that is typically used to treat RLS. However, recent changes in treatment philosophy by the experts are making gabapentin one of the first choices for treating new RLS patients. It doesn't work for everyone, but since you apparently reacted well to it in the past, you might be one of the ones for whom it is effective.
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.

Polar Bear
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Posts: 7225
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Undiagnosed RLS

Postby Polar Bear » Tue Sep 18, 2018 4:02 pm

Please let us know your feelings when you have had a look at the diagnosis questionnaire.
Are you at present using the Gabapentin and at what dose, and is it helping your symptoms?
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

luciekitty04
Posts: 2
Joined: Mon Sep 17, 2018 10:59 pm

Re: Undiagnosed RLS

Postby luciekitty04 » Tue Sep 18, 2018 6:54 pm

Looking at the list, I have all five symptoms. I have not used the Gabapentin yet, but what I have on hand is 300 mg. Should I take one before bed? The bottle says take one three times a day.

Rustsmith
Moderator
Posts: 3350
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Undiagnosed RLS

Postby Rustsmith » Tue Sep 18, 2018 7:41 pm

The required dose of gabapentin is something that varies a lot between individuals. 300mg at bedtime can be enough for some people to fall asleep and others may require 900, 1200 or more. Often the recommendation is to start low and titrate up, but that is a decision that needs to be made by your doctor.
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.


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