Restless Legs Syndrome (RLS) Discussion Board

I have been on gabapentin over 10 years. I take 1200 mg at night. Recently it has started to not help my rls symptoms. Has anyone been on gabapentin this long and it all of a sudden started to not help? What medication did your doctor put you on?

I haven't used gabapentin so can't comment on it personally, but do use Pregabalin (which is similar) to help with my rls symptoms.

Have you only ever used Gabapentin, it usually needs another medication to work in combination for best results. Of course, it also depends on how severe your symptoms may be. For example, my rls is severe and I use a combination of Pregabaline and Codeine, plus I buy Kratom.
If you have been on it for ten years it could be that your rls symptoms are getting worse. Have you spoken to your doctor about this. Possibly adding a low dose of another medication if you don't want to increase your Gaba.
Also perhaps get your bloods done to include your serum ferritin, you need this to be up near the 100 mark so check the levels and don't just accept being advised that it is 'normal'. Normal could be as low as 20.

When you are only taking 1.200 mg of Gabapentin, there is still much potential if higher doses might work. Maybe it does, maybe it does not but when you have taken Gabapentin that long, it is absolutely worth trying to see if a higher dose does improve things.

Personally I had taken another antiepileptic (Carbamazepine) which was quite useful for my RLS and my circadian disorder but sadly it failed me after 4 years. So that can happen for various reason. In my case Carbamazepine was even triggering RLS symptoms. So I had no choice and was forced to abandon the drug and replaced it with Oxcarbazepine.

And as already mentioned: Gabapentin is often not enough to successfully manage RLS. Also RLS tends to get worse over the years.

Anyway, this situation certainly complicates your situation. You could try replacing it with Lyrica (Pregabalin), a more potent drug very similar to Gabapentin in many ways. If a higher dose of Gabapentin fails, Lyrica certainly would be my first option to try then, especially since it is approved for RLS in the U.S. ... if this doesn't work you most likely have to get into opioids.

If you need some relief now, you can buy Kratom online. Kratom is kind of like an opioid (not chemically) but it does stimulate mu-opioid receptors, the exact receptor Morphine, Oxycodone and other opioids are heavily activating. So Kratom can provide significant relief but it also would mean that you are basically taking an opioid. So if you go down that route, you should make getting prescription opioids for RLS a priority.

Hollybelle78 wrote: ↑

Fri Aug 14, 2020 12:58 am

I have been on gabapentin over 10 years. I take 1200 mg at night. Recently it has started to not help my rls symptoms. Has anyone been on gabapentin this long and it all of a sudden started to not help? What medication did your doctor put you on?

Not very long on gabapentin (2 years approx) but my daily dose is 3,000 mg (lately I can get it to 2400 mg so it can vary). You might consider raising your dosage cause 1200 isn't that high.

I was on gabapentin for about 2 years, worked fine, got off it because IV Iron worked so much better. I agree with the advice of all those above. You may be able to do just fine on a higher dose of gabapentin, but likely your RLS has progressed and you may need another med in addition or instead of the gabapentin. Kratom is a good adjunct to gabapentin and the combination could be a good treatment for you.

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood tests doctors usually do (ferritin test) to check for low iron only check for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub