Anti-seizure medication

[newlife54]

Hi i have severe RLS both day and night, which is also body wide. My doctor as prescribed an anti-seizure medication, so far I have managed to stay off meds, but my symptoms are now too severe to ignore. I just wondered if anyone else as tried an anti seizure ?

[ChrisColumbus]

1. If you're talking about anti seizure meds alpha 2 delta ligands gabapentin or pregabalin, these are now first line treatments for RLS: read the CHRONIC PERSISTENT RLS section in here:

rls-uk.org/medical-treatments

Note how these drugs should be taken for RLS: many doctors are unfamiliar with the best treatment regime for RLS.

2. But before you embark on ANY medication for RLS, read the MEDICATIONS TO AVOID section further down that same link: there are many medications and supplements that trigger RLS. If you're using any of these come back here and list them for advice on alternatives.

3. And, furthermore before starting any medication, have you had your ferritin levels checked? Read the paper on iron therapy here:

rls-uk.org/_files/ugd/b0a19...

[newlife54 in reply to ChrisColumbus]

Thank you

[ChrisColumbus in reply to newlife54]

I note that Sue below - and apparently others previously - query whether your symptoms are consistent with a RLS diagnosis. If you have (say) Benign Fasciculation Syndrome a different regime might be appropriate, e.g.:

my.clevelandclinic.org/heal...

[newlife54 in reply to ChrisColumbus]

Chris please read my reply. The tablets are Carbamazepine

[ChrisColumbus in reply to newlife54]

Hmm. It's certainly not a straightforward case of RLS.

This is what carbamazepine is generally prescribed for in the UK:

bnf.nice.org.uk/drugs/carba...

Have you read through the whole of that Cleveland Clinic link on BFS (not just the Management & Treatment section that I particularly linked to). Did the neurologist perform the kind of tests mentioned in the Diagnosis section? (Although the Cleveland Clinic is of course a US clinic, and UK neurologists might not do the same...).

I can find little info on fasciculation on NHS/NICE sites: I did find the following:

gpnotebook.com/en-GB/pages/....

Few GPs and neurologists in the UK (and indeed much of the world) are knowledgeable on RLS - it's not included in their training - and perhaps the situation is similar on fasciculation. Hopefully Sue or someone else here can often further advice/information. I'm afraid that I have too little experience or knowledge of other conditions to help,

Looking back, I note that Joolsg reported fasciculation linked to her MS, writing "For fasculations, when they happen, I use medical cannabis. In your case, it could be linked to low magnesium, low potassium or low B12",

[newlife54 in reply to ChrisColumbus]

Hi Chris thank you for taking the time out to respond to me. Yes i have thought BFS right from the start, but it also seems to fit a lot of the criteria for RLS. The test done by the neurology department were nerve conductor and EEG test, plus testing leg strength and reflexes. He told me not one single fasciculation was visible on the screen., everything tested normal . Doctor did a total blood test and that came back normal other other than high cholesterol and kidneys a bit dehydrated. Both been rectified now. My doctor did point out to me that it was a muscular problem, and then gave me these tablets. I suspect its because they don't know what to do with me. Would RLS be a muscular complaint. I can literally feel the tiny muscle contractions as they occur. I am going to look into the diet side of thing with a fine comb, too much walking or driving seems to be the main trigger . I just feel a bit anxious about taking these tablets that is why I asked the question.

[SueJohnson]

In your last post it seemed liked you don't have RLS. Members said it sounded like BFS and you said you moved your legs to be comfortable and did not have the urge to move your legs which is the main thing about RLS.

All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.

Do you meet all of these? If yes I can give you some advice.

[newlife54]

Thank you for your reply, I have to date had no diagnosis from my doctor or from the neurologist (who told me it was anxiety and I was causing it myself. I asked for a second opinion and was rejected with instructions for my GP to check me for Stiff Persons Syndrome (which thankfully came back negative ) as the neuro had ruled out MND , MS or and other conditions, this is when she has given me the anti seizure medication , with no formal diagnosis ) I myself decided I had BFS as my symptoms did not seem to fit the criteria for RLS. However since then I have myself determined that it is probably a mixture of both.

These are my symptoms : Continuous small muscle contractions in left leg and stomach area , large continuous spasms in left leg calf muscle (moves the whole thing). Starts in the morning and goes on 24/7.

Worse when laying or sitting, and when laying down symptoms move into other areas including face, neck ears etc.

Sensations feel like a sandstorm, pin pricks, hot and cold, creeping ants etc etc.

The urge to move them does not seem as severe as a lot of people, however just like everyone else when I do the symptoms go or at least get a relief.

There has been a progression in the symptoms and intensity over the 5 years I have suffered with it.

I have exercise intolerance, and driving is the worst.

I watched a video about an American surgeon who is now operating on people with RLS and the guys leg looked just like mine. Anderson Podiatry Centre (if anyone in the USA is interested. I'm in the UK ).

Its thoroughly miserable and I am feeling very sorry for myself right now

[Joolsg]

Anti seizure medication is correct first line treatment for RLS..It takes 3 weeks to be effective.

So, you may as well try it to see if you get relief, but bear in mind it doesn't work immediately.

[newlife54]

I was given dopamine antagonist medication at first, did not like it. Pramiprexole. I think I will have to try the anti seizure as its just not going away and its getting worse

[Joolsg in reply to newlife54]

Pramipexole is a dopamine agonist and worsens RLS within a few years. That's why experts no longer prescribe it.Did you stop taking it? If so great. If not get off it very slowly.

RLS-UK has the withdrawal schedule and the Iron therapy print outs under 'useful resources'.

If raising serum ferritin above 200ųg/L and stopping trigger meds doesn't help, do ask for gabapentin or pregabalin. See RLS-UK for doses and timings.