Hypnic jerks & internal shaking?

[Louna]

Last year i was diagnosed with Genetic Long QT Syndrome, passed down to me at birth.
Have been on Propranolol beta blockers (2 x 40mg a day) since diagnosis.

I started having “Hypnic jerks” which really scare me. Just as i’m about to fall asleep sometimes i’ll almost be startled into waking up. Its awful. Its not every day, some times its once a week / once a month. Other times its every day for a week + at a time.

Right now i have had hypnic jerks every night for the past 5 days.


But - i have also been experiencing internal shaking. I can’t quite describe it. Its almost like my insides are vibrating? Like i can feel myself shaking, but i can’t visibly see it. If i pick up a cup of water, it would be fine. No visible shaking at all, just a sensation.

Sometimes the internal shaking sensation is all over my body. Sometimes just my head. Sometimes my legs.

Its not every day either - but has been for about 6 / 7 days - it comes and goes and varies how long it stays. I’ve gone a month without it and then it'll happen.

I’m not too concerned about the hypnic jerks, although i would like some advice if anyone has any regarding them

But the internal shaking is really scaring me when it happens. I’m worried its an issue with my nerves, my brain, etc.

Its just overall not fun :(

[Fishmanpa]

Most people have hypnic jerks when falling asleep. Some notice, some don't. My wife, since her illness, has this and they persist for up to an hour after she falls asleep. Often times I'm up watching the news an she'll jerk and twitch but sleep right through it. That, and the vibration feeling, like a phone on vibrate, are another common physical reaction to stress biology.

Positive thoughts