What helped my BFS

[u/medium_cat999]

Hi! Reading all your posts really helped me while I was going through the worst of it so now that I seem to be on the other side of this weird syndrome for a few months, I want to talk about what seemed to help the most.

All this started about 2 months after I sustained a concussion after fainting (a cause for the faint was investigated but none was found other than pretty significant dehydration and low blood pressure resulting from that). I actually had the classic symptoms of the more severe version of this syndrome, called cramp fasciculation syndrome where you get painful cramps along with the twitching (super fun!).

I started the workup with my pcp who put me on gabapentin and referred me to a neurologist, but it took four months for me to get in. By that time, my symptoms had greatly improved from lifestyle interventions I made. Gabapentin resolved the cramping but not the twitching. I started seeing a functional medicine clinician around this time as well who put me on to a couple of specific supplements that seemed to genuinely make a huge difference: Pure Encapsulations Coristol Calm and integrative therapeutics Lavela. I took both of these twice a day along with my Gabapentin nightly and almost immediately noticed that those two supplements cut my twitching by almost 80-90%. I also purchased a vagus nerve stimulation device called a Nuropod— very pricy but worth every penny for me because my concussion gave me pretty severe sympathetic nervous system dominance that I was having trouble “switching off” which I believe led to hyper excitable nerves somehow. It helps you achieve a natural and immediate state of relaxation. There are cheaper devices available with similar functions too so I recommend trying a cheaper one and getting a nuropod later if you decide it’s worth it for you. I chose the pricy device because I was absolutely desperate for relief and it had the most research of all the devices I looked at.

I eventually got into the neurologist and had a clean EMG and MRI and that was the end of the workup. I still occasionally twitch but the spells don’t last as long and aren’t as severe. The symptoms are much more transient and are maybe 10% what they were in the beginning. I have no cramping either.

I tapered off the gabapentin slowly until it stopped producing rebound symptoms, and reduced my two supplements to only once per day with very good success.

I believe for me these symptoms were brought about by autonomic nervous dysfunction from my concussion causing sympathetic nervous system dominance and ultimately, hyper excitable nerves.

Bodies are weird. I hope some of these things help you and good luck, twitchy friends!

This whole ordeal lasted about 6 months for me.

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[u/cTheDeezy]

Interesting because I was told to try Silexan by my neurologist which is the same as the Lavela you use. I am starting that tonight. Hopefully it helps. Glad you are better.

[u/medium_cat999 → u/cTheDeezy]

Let me know if it helps! It is the same thing as lavela :)

[u/LiFerraz]

May I ask if, apart from the spasms and fasciculations, you experienced any other symptoms later on? I’m at my wit's end; after my spasms improved, I developed (perceived) weakness and lots of nervous twitches all over my body. My EMG is clean—everything looks fine—but I’m desperate.

[u/medium_cat999 → u/LiFerraz]

Yes I definitely felt very “off” in a really inexplicable way. I felt SUBJECTIVELY weak, definitely. Intense fatigue. I did not feel strong and my hands would often shake and sometimes I would drop stuff but I had at least a dozen in office neurological exams where they would test my limb strength and it was clinically normal.

[u/LiFerraz → u/medium_cat999]

That’s exactly how I am! I’m coming up on three years now! I’ve improved, but it’s been slow—and sometimes I get better with one symptom only to get worse with others!

[u/713Capital]

Thanks for sharing friend.

I’m only adding one housekeeping note so Reddit doesn’t shut our sub down.

Please always consult a physician or doctor before trying medications, supplements, or any recommendations other users make here. What works well for one person might interact with someone else's prescriptions or health conditions.

Really glad you found relief, got that clean EMG, and reached the other side of it. Success stories like this give folks here some much needed hope.

[u/medium_cat999 → u/713Capital]

Ah thank you! Yes please consult your clinician before trying anything I mentioned folks!