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Posted: Tue Aug 09, 2016 9:41 pm
Has anyone ever been on Topiramate for rls or peripheral neuropathy?
I'm on 500mg 3 X a day of gabapenton and it's working great but I have been experiencing unexplained weight gain.
I was thinking of sugesting to my dr to put me on topirmate either to complement the gabapenton or to eventually discontinue it all together.
Posted: Tue Aug 09, 2016 9:58 pm
I was taking topiramate for migraine prevention when my RLS went from mild to severe. I don't feel that the topiramate did anything at all for my RLS movement urges or for my RLS induced insomnia. It did a little bit for my migraines, but I eventually insisted that I had to change when my aphasia went from difficulty recalling peoples names to difficulty recalling nouns. (I was getting it from my neuro, but my GP joked that it should be named "Dopamax" because of what can do to your speaking abilities.) I briefly switched to zonisamine before asking to go to gabapentin so that it could serve dual duty (migraine and RLS). Gabapentin has been fantastic for my migraines. It does not help with my RLS urge to move symptoms but is the ONLY medication that I have tried that helps me fall asleep normally. I a currently taking 900mg about a half hour before bedtime. The only side effect that I have noticed was mild, all day headaches when my doctor asked me to go to 1200mg. That lasted about 2 days before I dropped back.
As for weight gain, I am not even sure that that is possible for me, so I cannot help you with any experience with that side effect.
Posted: Wed Aug 10, 2016 5:18 pm
I'll have to talk with my dr because the weight gain from gabapenton is really the only side effect and it's unfortunate as its been working really well
Posted: Fri Aug 26, 2016 3:42 am
is a kainate GluR5 receptor antagonist,originally used as an anticonvulsant.
Posted: Fri Aug 26, 2016 6:50 am
Before gabapentin, many antiseizure drugs were tried and used. As a class, I'd guess that these were more effective than some, but not nearly as effective as opioids, dopaminergics, or the alpha-2 delta drugs such as gabapentin. We have had a few people here over the years who've tried some of these drugs, including topirimate, but only a handful that I can recall who had success.
I tried topirimate - it did not help the sensations or the urge to move. But, gabapentin doesn't help me much, either.
Posted: Sun Sep 11, 2016 5:15 am
@Rcure: You might have more luck with pregabalin/Lyrica, which is better studied than topiramate for WED/RLS and is also an alpha-2-delta ligand like gabapentin. It will not necessarily have the same side-effect profile. It is considerably more expensive than gabapentin, though.
I'm curious why the DAs didn't seem to help your symptoms. Did they at least help the first few days you took them? How sure are you that you have RLS/WED? - I am wondering if your main problem isn't peripheral neuropathy. You mentioned once that your RLS might be secondary to PN, have you followed up on that at all?
If PN is your main problem, topiramate might be the better choice, though I don't have much experience with PN.
Posted: Sun Sep 18, 2016 10:06 pm
I'm currently on a weightlist to see a neurologist at the moment.
My family doc has been really receptive to me wanting to try different medications. So currently I'm on 100 mg of Topamax two times a day and 100 milligrammes of gabapentin three times a day with the intention of coming off gabapentin altogether .
I'm stiff very tired and The weight gain has stopped and I've even been loosing weight, the pain and weakness isn't as bad as being on nothing but isn't great. Ive noticed with every dose I've come down on gabapenton there was kind of a yoyo effect for awhile in till I got used to the dose so I hope everything gets better.
On another note do other people experience fatigue and weakness in the leg walking and going up stairs with rls so much that it's hard to put in a 8hr work day, or even a 3day work week?
Posted: Sun Sep 18, 2016 11:51 pm
Your comment about the weight gain stopping reminds me of a comment that my first neurologist made when she first put me on topiramate for migraines. She said that a number of her female patients almost begged to be put on topiramate because one of the side effects is weight loss.
Posted: Mon Sep 19, 2016 12:27 am
I have never had any fatigue with RLS - I walked 2 hours in a canyon on Friday afternoon, then another 1.5 hours up and down hills around my house at midnight. I just kept walking because I still had symptoms. No fatigue.
Posted: Mon Sep 19, 2016 1:02 am
I'm not the best reference for fatigue, but I take 900mg of gabapentin each evening and haven't ever noticed fatigue that I would attribute to the gabapentin. Saturday I ran a half marathon just outside of Boulder, Colorado and then I spent about 90 minutes this morning white water kayaking. I was fatigued after both activities, but not so much so that I wasn't recovered after about a 30 minute nap.
Posted: Tue Sep 20, 2016 1:49 am
Off topic of this thread but I'm also currently getting tested for Lyme disease as I'm not convinced my rls is my primary condition. I was also diagnosed with fibro. Please forgive me I may just be venting here as my frustration is getting the best of me.
I was in the best Health of my life,on June 2015 I ran a half marothon, by mid August I started feeling pain in my legs,feet,thighs,arms,hands arms,elbows ,shoulders and just about everwhere else with the uncomfortable urge to move my arms, hands,feet legs thighs. Also started to feel chronicly fatiged and sick but the way I was sick is hard for me to explain almost like over stimulated or hyper sensitive.
Posted: Tue Sep 20, 2016 3:33 am
That must be very frustrating. Lyme seems a good thing to test for.
Posted: Tue Sep 20, 2016 7:11 am
do other people experience fatigue and weakness in the leg walking and going up stairs with rls so much that it's hard to put in a 8hr work day, or even a 3day work week?
This is not very WED-like at all. That and your description of how it started make me wonder, like you, if it really is RLS/WED or is something else, either entirely or in addition.
Lyme can be difficult to detect. If you end up with a diagnosis, be sure to treat yourself with probiotic foods before, during and after your antibiotic treatments!
Posted: Mon Nov 14, 2016 5:52 am
Well here is a fascinating update I'm off gabapenton and tropermate, my Rheumatologist Put me a prednason for 1 month and 400mg of hydroxychloroquine. My diagnoses is inflammatory arthritis, the exact kind and cause is still being investigated. i don't quit understand it but there may be more at play but the, the long and short of it is that I have a autoimmune disease.
Posted: Mon Nov 14, 2016 5:56 am
Other then feeling much weaker then I did 17 months ago from being in chronic pain I'm starting to feel like my old self