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Benign fasciculation syndrome (BFS)
Brain & Nervous System | Last Active: 2 days ago | Replies (415)Comment receiving replies
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
Replies to "Just wanted to share - I seem to have this BFS also now about 8-9months. As..."
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?
Thanks for your comments, Dr McMahon. I was just looking into Hyperbaric's for treatment. I have also found relief with IV Infusions. The vibrations are far less and the fasciculations have greatly decreased. I would highly recommend trying it. How has the hyperbaric tx helped?
Thanks,
Jill
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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.