Benign fasciculation syndrome (BFS)

I am thinking of asking my doctor about the carbatrol. Any side effects? I took klonipin for a few years along with gabapentin and didn’t like the short term memory side effects.

@captainanxiety8 How are things going now? Any improvement based on your tracking? I’ve been experiencing BFS for a few months now. Went to the neurologist and so far that’s what they have shared. I have very low vitamin D levels, so they are doing some autoimmune tests but otherwise I’ve landed in a similar boat.

Just wanted to share - I seem to have this BFS also now about 8-9months. As I am falling asleep, and waking up, I have a 'shuddering' sensation in my right arm to my finger tips, worsened when the arm is bent at the elbow. I had it in both arms a few months ago but it then was just my right. I also have nerve pain and intermittent pins and needles in my right fingers, just some of them. My left foot feels sort of tickly weak, which is triggered by diet I am convinced. I also have face aching and tingling, which was like a trigeminal neuralgia for about 7 months of the 9. I have had an MRI, which was clear. It started two weeks after the astrazeneca vaccine last March, which gave me the other symptoms and a lot more besides, mostly numbness all over and shaking.
I have tried a lot of remedies for this as it worries me so much. I believe it is seizure activity, electrophysiological dysfunctioning. Interesting to read the post about sodium-potassium gate problems. Scary to learn that this is associated with MND.
I found the only thing that has stopped or greatly reduced the BFS has been B-complex vitamins close to bedtime. But of course the problem is it can cause insomnia, which made me need to stop.
The shaking/ vibrating when tired is also new for me, it only ever happened in the past when I was at the start of an infection like a flu (not for 10 years), or if I had been drinking the night before, as a result of a hangover. When I researched this a little more, I found a few papers that intimate GABA may be the cause of this when hungover. I wonder whether GABA supplementation could be of use here. A quote from one paper reads "The GABA-B receptor (GABAB-R1) colocalizes with sodium-activated potassium channels (SLO2.1) and voltage-sensitive sodium channels (NaV1.6)." My understanding of this is limited, I am not a medical scientist, but sense there is a close link.
The only other things I can offer by way of something to try are : Fasting, e.g. Filinova; and Hyperbaric Oxygen Therapy.
I will be trying all three over the next month and will provide update, if I can keep motivated ! This has all taken a massive toll on my finances, mental health, and life in general.
God Bless,
Dr M McMahon

Hello Dr. McMahon. I have some similar symptoms to you, which started about 4 months or so ago at the same time as I had a nasty viral illness. I have had similar occurances in my life, starting when I was in my early 20's (I am 49 now), following viral illness. Often when I get ill, or sometimes even before, I will have the vibration sensation primarily in my feet. This past summer was by far the worst episode I ever had. I have the random fasciculations everywhere and vibrating sensations, primarily in my feet. Also, have strange sensations on my skin sometimes, which are hard to describe. I had a lot more numbness and cramping initially. That has gotten a good bit better over the last few months. I recently saw a neurologist. He said my neurological functions and strength all seem pretty normal. We didn't do an nerve conduction study at this time, since I have improved some since the initial illness. He said the best time to do that would have been about a month in. If my symptoms worsen or I have another bout of illness with a resurgence of symptoms, we will do the nerve conduction. I asked him if he thought this is BFS, but I think he didn't want to say without the nerve study. Thanks for the info about the sodium-potassium connection. I haven't read much about that yet in my research. I wish I had seen that info before I went to the neurologist.

I found this article about the use of gabapentin in BFS. You may have already seen it, but in case you didn't, I'll attach it here.

Sorry for the repeated posts, but I thought of something else. My GP prescribed me some Lorazepam (I saw her initially several times when I was first ill). That does seem to help. I'm not a person that takes much medicine (prefer supplements/natural cures), but it does help curb the fasciculation if I am having a bad day with it. Stress also really stirs up the symptoms. It may be something worth trying if you haven't.

Did you get a resolution ?

Welcome @jvaldez938, Was your question did you get a resolution for @captainanxiety8? Are you also diagnosed with benign fasciculation syndrome (BFS)?

Hello @curadh, Welcome to Connect. Thanks for sharing what you have tried other things you are planning to try. I don't have BFS but do have small fiber PN along with PMR, hypertension and a few others. Interesting you mentioned fasting as I have been doing intermittent fasting for about a year and it has helped me with losing and maintaining some weight and long term I believe it's going to help with a few other health issues. If you want more information on the fasting part there is another discussion that might be helpful.

Low-carb healthy fat living. Intermittent fasting. What’s your why?: https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/

Hoping you can stay motivated and provide an update later down the road. Do you mind sharing how you found Connect?

Also have it with PLMD