A million-dollar question: How to reduce twitching?

Post your questions about BFS here

Moderators: JohnV, Arron, garym

A million-dollar question: How to reduce twitching?

Postby crotwich on December 12th, 2014, 6:53 pm

First of all I am so grateful that this forum exists, it is good to know that you are not alone with these strange symptoms. To put it in brief, I am 32 years old male and I am only 5 months into this twitching madness. I have been diagnosed with BFS by the top three neuromuscular specialists in my country. OK, to be totally honest, one of them does not quite believe that BFS is a real disorder, but she is also convinced that nothing serious is lurking in the shadows. I twitch like a mad cow (metaphorically speaking); my calves never stop, and at least in every 2 seconds I feel some twitch in some part of my body. Because of the intensity of my fasciculations, one of the neuros thought that I might have Neuromyotonia (Isaacs' Syndrome). However, my EMG didn't detect the specific findings with respect to Neuromyotonia (and I also had negative VGKC antibodies).

Like most of us, I find this very debilitating. Somehow, in the eyes of our neuros, we seem to be fully healthy, but on the other hand our body's are clearly saying to us that something is wrong. Moreover, there are so many contradictory information out there about BFS and ALS/MND. In particular, it seems there is no real consensus to the question of how long one needs to wait in order to be certain (with respect to the latest statistical findings) in the benign diagnosis. All my neuros said to me that 3 months is quite sufficient time period, but on this forum I found that one needs to wait for 8-18 months to be sure that nothing sinister is hiding behind. So, I am not sure what to think anymore.

In my relatively short period of twitching I tried many things with the hope that I will find something that will reduce my fasciculations (like taking more vitamin/mineral supplements, exercise more or less, meditating, exclude coffee and alcohol,...). Unfortunately I didn't have any success. Now I am trying with a gluten-free diet, but I am not expecting anything spectacular.

What particularly frustrates me is that my fasciculations are becoming more prominent as time goes by. I know that many of us are in the same boat and that there is no real cure for our disorder at the moment, but if somebody has an advice how to reduce these fasciculations it would be more than welcome. Just to say that at the moment I don't want to try beta-blockers and anti-seizure drugs.
crotwich
Senior Member
Senior Member
 
Posts: 58
Joined: July 31st, 2014, 5:33 am
Location: Europe

Re: A million-dollar question: How to reduce twitching?

Postby MarioMangler on December 12th, 2014, 8:04 pm

Get more sleep, relax more. Do that for a week and it should make a difference.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
User avatar
MarioMangler
Saint
Saint
 
Posts: 1671
Joined: September 16th, 2008, 3:23 pm
Location: Upland, California

Re: A million-dollar question: How to reduce twitching?

Postby misterjuanperalta on December 12th, 2014, 9:20 pm

Sinister or not, one thing is certain: we must learn to accept and adapt. Mario is correct. My twitching has worsened and anxiety will reign until I learn to accept and adapt...rest and eat healthy.
misterjuanperalta
Saint
Saint
 
Posts: 515
Joined: August 21st, 2014, 7:27 am

Re: A million-dollar question: How to reduce twitching?

Postby crotwich on December 13th, 2014, 6:10 am

Thanks Mario and Juan. Did anybody have success with some specific diet?
crotwich
Senior Member
Senior Member
 
Posts: 58
Joined: July 31st, 2014, 5:33 am
Location: Europe

Re: A million-dollar question: How to reduce twitching?

Postby SecretAgentMan on December 13th, 2014, 4:15 pm

I had success with diet, but not all do. I believe that BFS is hypersensitivity of the nervous system produced by both physical and emotional stress. Physical stress can be inflammation in the body due to complex chain reactions that are long in the making. Emotional stress has been shown to produce physical stress therefore causing more physical inflammation, which in turn contributes to the hypersensitivity of the nervous system. In my particular case I could notice an increase in symptoms when I was stressed, worried, fearful, highly active (even just exercising), etc. I also was able to notice a reduction in symptoms by eliminating trigger foods from my diet such as gluten, dairy, soy, and other highly processed foods with chemicals, preservatives, pesticides, etc. I ended up doing the caveman diet. The more natural I ate, the better my symptoms were. I was eating meats, fish, veggies, fruits, and drinking nothing but water and herbal tea. No grains, milk, dairy, sweeteners, or even condiments like ketchup. It sucked for a while, but got better as I learned to get creative and tried new things.

The diet was only temporary because as I said before, I was in a state where the food was causing inflammation. Google Leaky Gut Syndrome. This is what I had. The nervous system hypersensitivity or BFS was just a symptom of other problems going on in my body. There is no one thing that caused it. It was more a lot of little things. Diet helped but was not the silver bullet. Meditation helped but was not the silver bullet. Eventually I was able to heal and recover to a point where the BFS went away, but it took many, many months.
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
User avatar
SecretAgentMan
Saint
Saint
 
Posts: 1048
Joined: June 30th, 2010, 3:42 pm
Location: Dayton, OH suburbs

Re: A million-dollar question: How to reduce twitching?

Postby crotwich on December 14th, 2014, 12:05 pm

Many thanks SecretAgentMan. I enjoy reading your posts and I will try to follow your advice(s). As TwitchyDoc already mentioned today (viewtopic.php?f=4&t=21294), it seems that there is a scientific evidence that gluten might be one of the triggers of BFS. It is very challenging to get rid of the underlying stress and anxiety, but I hope I will eventually succeed.
crotwich
Senior Member
Senior Member
 
Posts: 58
Joined: July 31st, 2014, 5:33 am
Location: Europe

Re: A million-dollar question: How to reduce twitching?

Postby misterjuanperalta on December 14th, 2014, 1:31 pm

Gluten is an exitotoxin, responsible for BFS and more severe phenomena.
misterjuanperalta
Saint
Saint
 
Posts: 515
Joined: August 21st, 2014, 7:27 am

Re: A million-dollar question: How to reduce twitching?

Sponsor

Sponsor
 


Return to Questions About BFS

Who is online

Users browsing this forum: Bing [Bot], Google Adsense [Bot] and 5 guests