This is a bit lengthy so I hope it's ok to post in this forum - I am about to try some supplement so thought it best to post here.
I only found this forum last night and found what I believe to be the most important paragraphs I've read since I started twitching 11 years ago - not because they provide a solution but perhaps finally a reason and a link which may enable me to take the next step to finding an answer. If you've not seen this post you can find it half way down the following page on the old board: ->
http://web.archive.org/web/200109080841 ... .php?sid=8
The post is by JohnV and it looks like this person ran the last board and maybe this one? Perhaps someone can fill me in on this - I'd be interested to hear this person's thoughts on my post and of course anyone else on this board.
Anyway I'll get to the point. I've read many times that those with BFS seem to trace its beginning to some sort of viral infection. I know exactly when I started twitching - it was as I said above 11 years ago. I was a heavy drinker at that time and did drugs. One day I was drunk and did LSD - I had a bad reaction and spent many hours suffering convulsions. It was enough to put an end to the drink/drugs. From that moment on I was suffering twitching - initially very intense and painful. I tried to seek help or advise but as you can imagine as soon as I mentioned the LSD I was considered a lunatic - 'all in the mind young man'. To a certain extent I have to believe that was true.
After 5-6 years of trying to understand what was happening I went to see a neurologist. I did an ECG and was diagnosed with BFS. It was a breaking point for me and I subsequently broke down. My trusted GP put me on an anti-depressant (quite correctly) and I was able to gradually put the thoughts on finding an answer to the twitching on hold. My GP said the twitching could be labelled under the depression umbrella and as I was finding my feet again on the meds I was prepared to accept it.
I've been on the medication ever since but am on such an low dosage now (< 10mg) that it's hardly worth bothering with. My life has been great and I've just accepted the twitching and the discomfort that it has continued to cause me all these years. I should just get on with things but I do mathematics for a living and am always looking for solutions - so when ever I have an episode where I'm having painful/uncomfortable twitching I will spend a few hours checking the web for any new info that might convince me that it's not just depression. (I honestly have to be the least depressed person imaginable these days!)
That's what happened last night when i found this website and that post I mentioned above. It was like fmaking a step forward in a mathematical proof. This is why I felt this - LSD suppresses/shuts down part of the immune system and can lead to a weakened immune system. Now as far as I know this usually only happens with prolonged use - I was a one-off user and had a bad reaction and have twitched ever since. Now I appreciate that perhaps I'm behind all you board members in appreciating that BFS is somehow linked to a weakened immune system but to me it was new and a revelation!
What's the solution? - I don't know but this has to be a step forward and I hope JohnV is still investigating. The first thing I did was do a search on topics which covered strengthing the immune system - has anyone heard of Beta Glucan? I'm trying to get my hands on it - perhaps someone has read this and knows I'm wasting my time - great! please tell me - if not I'll let you all know how it goes. My medical knowledge is practically nil and it only took 5 mins of searching the net to come up with this supplement so I admit I'm clutching at straws.The other factors which JohnV mentions I can relate to 100% e.g. stress increasing the symptoms and meditation reducing them.
Thanks for permitting this post and I'll be around this board if anyone wishes to chat - good luck.