Questions about Topamax

[Restlesssinger]

Hi, Everyone. Haven't been on here in a while. My doc wants me to take topamax. This is to reduce migraines but I've read it also might help RLS. Does anyone here know if it causes augmentation (since it's a dopamine agonist)? Any other info you can offer would be helpful, too. Side effects? She's suggesting I start with a VERY low dose (25 mg. per day) but frankly I'm not convinced even this is a good idea. Thank you!

[Restlesssinger]

Actually, Manerva, I've read on the internet that topamax HAS been used for RLS. (researchgate.net/publicatio... among other links.) At the same time, there is some research that shows an increase in RLS from taking topamax. Very confusing. As for being a dopamine agonist v antagonist, both actions have been attributed to topamax, weirdly. This is why I asked the question again. While I might have asked the same question two years ago (your memory is impressive!), my doctor continues to pressure me into trying this drug for migraines; I continue to tell her that it might actually exacerbate the RLS, along with its MANY other unpleasant side effects. Thank you for your reply. I will add, however, that the tone of your response was a bit....um, snarky....which I doubt you intended. But, thank you for taking the time to reply.

[Restlesssinger]

Thank you! I just edited my post to include a link to an article. I'll add some others later today. I tend to do a lot of internet surfing, esp. about RLS. Some of it's confusing. I haven't been in this forum for ages but will check back in to let you know what I find.

[Hidden]

I’d love to know if Topamax helps RLS as well. I’ve certainly seen some info about it being looked into. Pregabalin is of course also a type of antidepressant.I know certainly that it is used as a migraine prevention.

Side effects tend to be less at lower doses in general.

If you decide to take it do let us know how you get on.

[Hidden in reply to Hidden]

Oh dear I am not concentrating - I should have said Pregabalin is also a type of antiepileptic! More coffee needed this am!!

[Hidden]

Also further to various replies and my reply above, of course there are all these new possibilities being looked into which even if they prove to be effective take ages to get into official guidelines eg NIce. The Nice process occurs for loads of conditions & not all can be reviewed non stop. It involves lots of people on committees I believe, people who are experts in various fields who have ‘day jobs’ as well, so new things tend to be prescribed ‘off licence ‘ at first. When I 1st took it was definitely prescribed off licence though now has been prescribed main stream.When I have spoken to a haematologist about my own specific bleeding risk I intend to canvass my GP about trying dipyridamole because there have been positive reports & if there or enough info about topamax emerges if need be I’ll do the same for it

[Hidden in reply to Hidden]

I meant to write when I 1st took Pregabalin re it being prescribed off licence, sorry earlier reply did not make sense

[Munroist]

In common with others I note that is seems to be similar in action and effect to pregabalin or Gabapentin although it’s mode of action is not very well understood and the list of common side effects is pretty daunting. I would ask the doctor to explain the differences between the two types of drugs and why they would recommend one over the other. Pregabalin is well understood and recommended for RLS, don’t know about the migraine aspect.

[Hoochybaby]

Hi Manerva re reply to the last post from restlesssinger about being sarky I must admit I did find your last reply to me being in a similar vein maybe it’s your attitude I’ve no doubt your very well informed but a lot of us are not For you information yes I do live alone

I’m a widower 82 years old with two daughters and three grandchildren

I do my best to keep up with all the information but I find my GP and neurologist have limited knowledge and I’m convinced that my insomnia is due to my severe rls and not other factors

[Hidden in reply to Hoochybaby]

Hi Hoochybaby,I hadn’t read the original messages between yourself & Manerva but I have now & I’d be upset if I’d received that reply for sure.

Most of us on this site are very very sympathetic to each other’s distress. We don’t need to be told we are focussing on the wrong things. It feels desperate to be awake so much at night when all we want to do is sleep & we need someone to reach out to at these dark times.

It makes no difference how many folk we live with. I’m sure most of us don’t go around waking others up for company so then more folk are awake & sleep deprived.

In my opinion no CBT in the world will improve this intense & horrible problem.

I think I have quite a good attitude to it. I don’t dwell on it day time when it’s not there & somehow always believe that the next night I’ll sleep ok.

But each night I feel it is utter hell.

Believe me most of us understand so even if we can’t come up with solutions we understand.

We don’t need to be challenged I’m sure. We need sympathy & understanding.

I hope you find some peace.

[Hoochybaby in reply to Hidden]

Dear AlisonMany thanks for your kind reply

I don’t think I’ve been thinking straight my restless legs been so severe the last few nights I just don’t know what to next I’ve spent the nights walking up and down, reading, doing crosswords etc anything to take my mind off the dreaded legs but hour after hour it gets very draining

My dog sleeps the sleep of an angel on the settee and gives me great comfort when he wakes he likes me and snuggles up to me and for a while makes life worth living

[Hidden in reply to Hidden]

pubmed.ncbi.nlm.nih.gov/183...

restlesslegssyndrome.sleep-...

[Hidden in reply to Hidden]

Suppose it depends on how you deal with it normally. CBT in all conditions is helpful for when you need a hand to help yourself

[Hidden in reply to Hidden]

nhs.uk/mental-health/talkin...

ncbi.nlm.nih.gov/pmc/articl...

onlinelibrary.wiley.com/doi...

[Hidden in reply to Hidden]

Thank you. I don’t wish to prolong this discussion. I am a retired GP who had a special interest in mental health.I have my own view about how best I can support folk whose posts touch me on this site, especially during their dark and desperate times and am also very grateful for the support I receive.

We all do things in our own individual way and there is room for us all, for people to take from our writings what they wish as long as we are kind and considerate in my view.

I joined as a fairly desperate fellow sufferer, not as an expert in any way, and am happy to share my experience and ideas if it helps.

[1Ginge1]

OUCH Manerva. You must be having a bad day. We all look to you to make us feel better. We forget that you are also suffering this and could use some return caring from us.

[1Ginge1 in reply to 1Ginge1]

And one other thing. Where would we all be if Manerva disappeared for a while or forever. Would be pretty hard going on without all that research. We need to give each other a break and lots of love

[hareynolds]

Hi Restlesssinger, I currently take Trokendi which an extended release format of topamax and I haven’t experienced any negative RLS side effects. That said, I don’t take it as a treatment for RLS.

Until I got used to the medicine, I had some cognitive issues (mostly related to short term memory) and have lost about 100 lbs because it makes certain foods taste off to me.

Good luck to you in your search for acceptable treatments - it’s not easy!

[marsha2306]

Is it a dopamine agonist? Haven’t heard that before.