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Jittery feeling, toe twitching, involuntary leg movements and more
Brain & Nervous System | Last Active: Feb 26 11:31pm | Replies (21)Comment receiving replies
Maybe I'm going crazy. My symptoms seem to be getting worse. Going to sleep is very difficult without some kind of sleep aid, and if I wake up during the night to pee or because I left an alarm to early, it's impssible to go back to sleep. This morning it happened. The sensation was a lot like a "carpet burn" type of tingly feeling. I seem to be experiencing sudden movements even when not trying to falling asleep now.
@scotiagirl It does seem like I have many of the symptoms. No tongue twitching, which to me was more of a sign of ALS. But I also seem to be having heartbeat-like twitching in my mid-torso as well as buttocks. Not sure of BLS or ALS would be in those areas.
@pamelaz My mom said it might be the vaccine, too, but I'm having a hard time getting on that bandwagon. I only got up to the 2nd one. I'm trying to think if I had any facilitations before I got the vax...
@wizer I do believe I have RLS, but the uncontrollable need to move sensation is a bit more uncommon, and only happens to me a few times a month. Socks give me involuntary movements during the day, but I'll try it when I have the sensations next time.
@indianajj I'll ask my psychiatrist (since I was dismissed by the neurologist, who she recommended and seems to be the only one taking me seriously) about Quinine if I can get an appointment later today. We don't have Kroger in Japan, but I can at least get Tonic Water. I'll try it, thanks.
Replies to "Maybe I'm going crazy. My symptoms seem to be getting worse. Going to sleep is very..."
I know it’s been 1 year since your post @falconhawaii
but thought I would comment. By coincidence, I’m also based in Japan now and have experienced similar BFS symptoms as you described in your message.
The calf twitches started shortly after arriving in Singapore on a business trip back in April/2023. I had experienced mild twitching and cramps in my calves in the past when dehydrated, pretty common stuff. But this time was different — the night after arriving in Singapore was rough, soon after going to bed, both calves started twitching uncontrollably, and soon the painful cramps came. This went on all night, nearly impossible to sleep for more than 10-15 minutes at a time.
The twitches went on 24 hours a day and the night cramps continued. As I was scheduled to be in SG for 2 weeks, on the 4th day after very little sleep and feeling increasingly anxious, I visited a neurologist there. The moment he saw the rapid twitching in my calves he observed that there may be neurological issues and I would need the standard nerve tests done.
I decided to wait until I returned to Tokyos to get them done.
The short version is that 3 weeks later I had a variety of standard nerve tests done by a neurologist. Everything came out “normal”, while the neurologist observed the constant twitching he concluded after the tests that the twitches were not related to a neurological condition.
I visited “ Google guru”for answers and as per advice from many in the chat groups, made a conscious decision not to go down the ALS/MS rabbit hole. I started to reduce and evaluate eliminate caffeine from my diet, very tough as a coffee lover. And then reduced alcohol consumption to next to zero. This seems to decrease the twitching significantly although still there 24/7, less night cramps.
One thing is clear — for me at least, the calf twitches are much heavier when I am stressed, and lacking sleep. Add in too much caffeine during the day and a glass of wine or two and I know I have a very rough night ahead.
I’ve accepted that BFS may never fully go away, and instead of beating myself up about why it appeared in the first place, I’ve decided to do my best to cope with it.
Sleeping pills, neuro blockers (epilepsy drugs), etc…do help with sleep but I’m weary of the possibility of addiction so I’m resisting taking these drugs for more than 2-3 times a week.
It’s amazing to see how many people are dealing with BFS around the world and yet there is no effective treatment yet. Hopefully there is a break thru one day soon…for now, I try not to think about it and in turn, do everything I can to reduce the risk thru diet and overall wellness. Hope this helps!
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Skullcap is what calms my fasciculations and restless legs.