Restless Legs Syndrome (RLS) Discussion Board

I take Topamax for migraines and nerve pain has anyone had any problems with leg jerks with it? It's a antiseizure drug it shouldn't cause jerking not sure if it's from that.

As Topamax is anti seizure it wouldn't be expected that leg jerks would be a side effect. However, upon doing a search, I did see references to myclonic jerking (twitching) from some users of Topamax. Ironic that Topamax can be prescribed as a treatment for myclonic jerking (twitching).

I took topiramate (Topamax) for several years before I was finally diagnosed with severe RLS and PLMS. I remember having what I now know as myclonic jerks as I was almost falling asleep just before the RLS kicked in. That neuro knew nothing about RLS/PLMS, so all she did when I complained was perform an EEG and then tell me I was okay.

I have not had the jerks since I was diagnosed and started treatment for RLS. By that time I had switched from topiramate to zonisamide for my migraines because I was having problems with aphasia (I had stopped being able to recall proper names and was starting to have problems with all nouns). I do not remember whether I had the jerks while on zonisamide, but that wasn't very long before my RLS/PLMS diagnosis.

Since the treatments used for RLS also work on PLMS, I cannot say whether the myclonic jerks were due to the topiramate or if they were part of my PLMS that went away when I was initially put on pramipexole. Either way, I haven't had them for quite a while now.

Long, long ago - say 2005 - this was a drug that some RLS specialists tried for RLS, but they decided it wasn't as good as gabapentin. Now, I can't remember why, lol, just that they talked about it at one of the RLS conferences.

I took it for a short time because it can be helpful for sleep. At the time, I seemed to have a mood disruption when taking it, so I stopped. I can't remember if there were any jerks that went with it, but I don't think so.

Interesting discussion...as I go sideways....when I first started methadone, the hypnic jerks were SO strong that my husband wanted me to call the sleep doc and verify it was OK. I'd have a bunch of them when falling to sleep. I don't have them much any more. Wonder why...

When I my neuro put me on topamax for my migraines, my GP joked "Oh, you mean Dopamax?" in reference to what it does to your ability to speak. I was able to fake my way in conversations for more than 2 years of not being able to recall anyone's name quickly. They didn't realize what was going on, but it was extremely frustrating. When I started to have problems with the names of everyday items, I said enough is enough and demanded a change.

Also, at one point early in my use of topamax, my doctor increased me from a low to a "moderate" dose. For a while I did not notice that I had lost all emotion, except for my feelings for my wife. Then one night we were at a symphony concert and they played a piece that I knew that I used to really love to hear. I realized that I was not feeling anything. I heard the music and the technical aspects of the piece, but felt nothing. As a musician during my early years, music has always been an important thing for me. Art such as painting and sculptures are interesting, but music goes directly to my emotions. So to feel absolutely nothing that evening told me that it was time to call the doctor and reduce the dose, even if it meant more migraines.

As for sleep, topamax and zonegran did nothing for my insomnia. I was taking them at the same time as we were experimenting with other sleep aids (benzos and z-drugs). Nothing helped me fall asleep before 1 or 2AM until I insisted on changing to gabapentin due to a side effect of zonegran that was causing a serious electrolyte imbalance during the second half of marathons.