Neuromyotonia: All Clear!

After more than a year of suffering cramps, muscle pain and fasciculations, and working my way through many Doctors and two Neurologists, I was recently given the all clear on Neuromyotonia (I never really considered ALS/MS as a serious possibility, mainly from reading experiences on excellent sites such as this one). After my second painful EMG (the first Neuro managed to give me two severe cramps during the test!), my current (very good) Neuro then explained that this meant I "had" BCS/BFS, and decided to start me on a course of Lamotrigine.

I am ramping up my dosage (to avoid any possible serious side effects), and currently on 100mg (50mg twice daily). However my experience so far has been pretty poor, and I am currently wondering if I should continue? At this point I am fairly sure that it has actually _increased_ the level of fasciculations and muscle pain, which seems to get worse every time the dosage is increased before settling down slightly. I also have a constant sore and dry throat and cough which coincides with when I started the course.

Does anyone else have any experience with Lamotrigine? Did things get worse before they improved? I personally had much better results with high dosage time-release B vitamin tabs combined with Magnesium than this drug - at least I used to get a few days before where the symptoms subsided almost completely. Now they are constant with the average fasciculations stronger/deeper than before.

Thanks for any help, and for all your posts that definitely helped this newbie over this past year!

Why Lamictal anyway? I know one of my clients who was bipolar was on it for that but I've never heard of it being used for BFS. I remember it being a pretty serious drug - one that needed to by monitored through blood level tests etc...

[/b]

Hi Chris.

Thanks for your feedback. I have now decided to come off the Lamotrigine, and just emailed my Neuro to let him know. I have also felt tired like you, as well as giddy and lacking in concentration.

I was lucky with the Neuro - the first (NHS) was pretty clueless, but thank goodness for company health care schemes! Got advice on the best Neuro for the symptoms, and saw him within a couple of weeks, with blood tests (inc. voltage-gated Potassium antibodies) and a much more comprehensive EMG within a week. He says that he will continue to try other medications to see if they will help, so I will ask about Gabapentin. I am hopeful that this will help, as I believe that it affects GABA - I have already had good results with Valerian, B Vits and Magnesium supplements which are also thought to balance GABA and Glutamate levels. These have been holding back the worst of my symptoms for a while!

Thanks again

Tim