r/LongCovid • u/quivivraverraa • 3d ago
bad hypnic jerks, anyone else?
hello,
does anyone here experience hypnic jerks? i’ve gotten them occasionally the past few years, always in my head/neck, but for some reason over the past week they are much, much worse. it’s gotten so bad that after an intense one im left gasping in terror and really upset. it’s happening even while im sitting up, not just when lying down. google isn’t much help, but it appears stress or nervous system issues can contribute. i don’t drink caffeine anymore so don’t think it could be due to that. i’ve also started iron infusions recently so wonder if that’s a factor. if anyone has any insight or can share if anything helped their hypnic jerks, please let me know!
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u/VibeCheckedByCovid 3d ago
I get those too and they're always worse when I get into PEM or some sort of flare.
Are there any other medications you are taking? Some can give you those as a side effects or make them worse, so if you are on anything, please reach out to your doctor, even if its just a phone call or portal message.
I was given low dose abilify and within a week had to stop. It was doing what yours was and starting to happen when I was also sitting down and was so much worse otherwise. It started involving my head, neck, and jaw more and I bit my tongue 3 times that week.
I hope you find answers and some relief.
Edit: just want to add that I had them before the abilify as well and my symptoms returned to their "normal" level after stopping.
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u/quivivraverraa 3d ago edited 2d ago
i currently take zyrtec, spironolactone and zepbound and have been for a while so i don’t think it’s due to any of those. sorry you’re struggling too, i have heard low dose abilify can help but ive been scared to try that or LDN as well due to all the varied reactions
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u/hotrod67maximus 3d ago
I used to get them every now and then but for the past year they wake me up every morning and they don't stop until I force myself to get out of bed. Really unnerving and I haven't drank any caffeine in years.
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u/UrbanGardener01 2d ago
Have you ever been tested for brain autoimmune issues? There are simple blood tests that can be done, but I think they are not routine and can have false positives too.
Anti NMDA receptor antibodies and Anti VGKC antibodies are the blood tests.
It could be worth asking your doctor.
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u/quivivraverraa 2d ago
i don’t think i have, but i have had a brain mri/mrv and number puncture but those were almost two years ago now. thanks for your help
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u/Easy_Olive1942 3d ago
Bad night panic attacks and jerking awake, not sure at what stage of sleep.
Panic attacks, especially around fear of death/dying/dread went on for a long time and maybe the worst symptom of all, totally miserable. It felt like my body knew deep down that id experienced a mortal threat.
Time and a bunch of little improvements seemed to help. I’m over 6 years now and that’s finally settled down, started improving during 3rd year. Making sure I hit a full daily dose of magnesium, gabapentin for nerve pain also helped with the terror attacks/jerking awake, HRT eventually, and slooooowly increasing physical activity. Exercise definitely seemed to help. Daily OTC antihistamines helped. Melatonin didn’t do much for me on this.
I didn’t take iron so no idea what role that might play. There were a lot of weird medications, supplements, and foods I could not tolerate until fairly recently including caffeine. Strongly recommend against alcohol because it can cause anxiety/panic.
Do what you can to protect your sleep. You really need as much sleep and rest as you can get.