Topiramate 50mg

[Bejwo50]

Has anyone tried topiramte for rls. Gp prescribed topiramate for mums rls. 50mg 1 at night can increase to 2 after 2 weeks. Mum has been trying this for 2 week but hasn't helped her rls and she feels somewhat confused & drowsy.

She takes tramadol 2x50mg twice a day which helps but she feels if she could increase to 2x50mg 3 times a day and not take any other rls meds this would help her.

Her gp however is not keen on this treatment as he thinks tramadol is increasing her rls.

We've tried prevailing, gabapentin, ropinirole, pramipexole and the skin patches. All worked for some time and then symptoms came back. The patches gave her side effects so couldn't use them for long.

I'm thinking that it may help if she tries one of the medicines she had before and use that until symptoms return and keep changing each time 🤔 extremely difficult and awful seeing her suffer.

[Hidden]

I've never heard of topiramate being prescribed for RLS!

If your mums tried pregabalin and gabapentin before with little success and also all the dopamine agonists (pramipexole, ropinirole and rotigotine) then I can see the GP's reasoning for the topiramate but it's not recommended for RLS.

This may be because, as far as I'm aware, it's not been trialled for RLS whereas the gabapentinoids have. There's no real evidence of it working then.

In addition it seems to me that its side effects are worse than for the gabapentinoids and hence, as seems to be the case for your mum, the side effects far outweigh any benefit.

I wonder if your mum has had blood tests for iron deficiency. This really is a must. Iron deficiency is a major causative factor in RLS even in the absence of anaemia.

Simply your mum should have a test for serum ferritin, and if the result is less than 75ug/L she could benefit from starting an oral iron supplement.

The second thing that should be considered for anybody with RLS is if she is taking any other medication for any other condition. There is a long list of medicines known to make RLS worse. Avoiding these or switching to alternatives can make a difference.

As regards tramadol. It's interesting that your mum thinks increasing will help and the GP thinks it's making it worse. It's like the doctor telling you mum what her symptoms are and your mum writing the prescription.

I'm on your mum's side, she should be telling the GP her experience and he should be listening.

In the GPs defense, it is known that tramadol can cause problems.

However the point about tramadol is that it is a weak opioid and is usually used for breakthrough symptoms, intermittently and not on it's own.

Opioids are recognised as a second line treatment for RLS when other drugs have failed, as they have in your mum's case.

In which case oxycodone is a more appropriate solution for RLS. It's more potent but can be used in a lower dose. A more recent alternative now gaining recognition is low dose buprenorhine.

I order to get a prescription for either of these your mum may need to see a specialist.

I hope this helps.

[Bejwo50 in reply to Hidden]

Thanks for the detailed reply, I will discuss this with the gp tomorrow

[Hidden]

I’ve seen some reports that topiramate can help RLS. It’s an antiepileptic like Pregabalin is - used for other things as well and a different type of chemical. I’ve also seen a couple of reports of topiramate causing RLS. I am no expert though

[atwitsendd]

I am wondering how much of the gabapentin your mum was on and was she taking the ropinirole with the gabapentin? I take 1800mg a day of gabapentin; 300mg x2 in the morning, 300mg x2 in the afternoon and 300mg x2 before bed, and 2mg of the ropinirole about 3 hours before bed. I know this is a higher dose but this is what works for me, but it is also used to help with my diabetic neuropathy, so not sure if your mum would need as high a dose as this but you can talk to her doctor about that. I do have occasional bad days, but in general this is what works for me.

I hope this helps some. Good luck.

[johannasuar]

Hi Bejwo. I have been on Tramadol for 11 years now with the same dose and have never experienced augmentation. I take 1 50 mg tab at 5:30 pm, and another at 10:pm. I think your mothers doctor isn’t very familiar either with RLS, which usually is the cause, or with Tramadol. Tramadol DOES NOT produce or enhanced RLS, it works beautifully for me and it’s the least addictive of the opiates . There are some side effects but not so bad as having RLS which is a wretched desease you have. Tramadol causes constipation just like other opiates, I drink an over the counter tea before bedtime called Smooth Move, and that helps, also, Tramadol may cause sleeplessness in some people including myself, however, eventually it’ll catch up with me and I get a full nights rest every two to three days. In the meantime I take naps during the day, but I’ll do anything not to have RLS. My advice is to be very strict with the times you take Tramadol and if your mom knows about the time she usually starts getting RLS, the trick is to get medicated before it starts, otherwise the Tramadol will take close to two hrs. to kick in. I don’t know her condition since you say she takes it 3x daily, I don’t have that need during the week I don’t have RLS, mine is strictly at night and begins at around 6:30/7pm so I don’t let it start. Just one last word, what works for one person might NOT work for another, I feel very lucky to have found my solution. You might also check what other meds your mom is on because there’s a few that will increase RLS, maybe you should get a list of the meds that are almost prohibited for RLS sufferers. Someone here can guide you where to get that information. Good luck. Keep us dated.

[wildlegs]

I’ve had RLS for 25+ years and tried many things to help with the leg pain. I started taking Tramodol about 10 years ago. I started with 100 mg but after a while it just wasn’t enough. I gradually over a three year period started using 300 mg and that was the magic number for me. I was so happy for six years then we moved to a different state and I had a hard time getting a doctor to give Tramodol at all (an opioid ). After three months I finally found a pain doctor who would give me Tramodol but only 200 mg. I’ve been on this dose for a year now and my RLS is better but not like it was with 300 mg. I’m hoping that I can get 300 mg eventually from this doctor. Four years ago Tramodol wasn’t even classified as an opioid. I used to get a 90 day supply with two refills but now I get a 30 day supply and have to see a doctor every 30 days to get that. It’s a pain but it’s a bigger pain not to have it at all. Good luck!

[jaysull]

Not sure that taking Tramadol during the day is a good idea. I take one 50mg capsule at night and that sorts out my RLS. Maybe Mum could just try one an hour before she goes to bed then two if that doesn't work, after a week. The reason why the GP is reluctant to prescribe more is that Tramadol, being an opioid, is clearly addictive and he/she doesn't want to be responsible for that.