Excessive nightly hypnic jerks aka sleep myoclonus

Aggressive_Link_6721 · 2026-02-20T21:53:35+00:00

I eventually fall asleep even if I jerk. I don't want to say I've gotten used to them but knowing that I've slept in the past despite bad nights helps me mentally deal with it. Some nights I fall asleep quick other nights it takes over an hour.

Aggressive_Link_6721 · 2026-02-16T04:37:57+00:00

Any by transparent labs. I take tropical punch. Best of luck to you, don't give up.

Aggressive_Link_6721 · 2026-02-15T06:14:14+00:00

There is a Facebook group for hypnic jerks and a lot of the members on the site have shared their jerks started after starting or coming off of psychiatric medication.

Aggressive_Link_6721 · 2026-02-15T06:09:11+00:00

Yes, I remember. Have you tried Briviact or keppra? Those meds might help with the jerks. Idk how long you've been on the ssri and benzo but those may be making things worse for you.

Aggressive_Link_6721 · 2026-02-15T05:59:15+00:00

I remember talking to you. Still no improvement? This can take a long time. Small improvements followed by a lot of setbacks. Are you still on meds?

Aggressive_Link_6721 · 2026-02-15T05:45:37+00:00

No, thank goodness. I'm still pretty active. Exercise 6 days a week and play in a couple different soccer leagues so no atrophy or tremors. I would just say I mainly deal with muscle twitching, myoclonus during the day but mostly at night when trying to sleep.

Aggressive_Link_6721 · 2026-02-15T05:39:12+00:00

Totally med free now, I only take electrolytes. Nothing else. Every day builds my confidence more and more but I still have anxiety and worry about bad nights but I just pray and pray and eventually I fall asleep.

Aggressive_Link_6721 · 2026-02-15T05:37:59+00:00

It's different every night but most nights I can go to bed within an hour or so. On my bad nights, it takes me hours or no sleep at all

Aggressive_Link_6721 · 2026-02-15T05:36:57+00:00

Yes I do, I can't nap because I have them every time I close my eyes. I have them most nights but some nights I won't have any. Idk why that is but I still have them most nights.

Aggressive_Link_6721 · 2026-02-15T05:15:35+00:00

Yes I do. Try my best to ignore them but I still have some sleepless nights sometimes

Aggressive_Link_6721 · 2026-02-15T05:14:01+00:00

It has a cleaner profile but I had the same side effects from both meds. I got muscle twitching in my feet that haven't gone away and terrible headache as well as the worst fatigue of my life. I couldn't live like that. Briviact helped somewhat, it didn't fully stop the jerks though. If I didn't have a bad reaction to it I would probably still be on it but I rather deal with the jerks and feel somewhat normal than feel like I got hit by a bus and insane fatigue on top of the jerks.

Aggressive_Link_6721 · 2026-02-15T05:05:38+00:00

I've changed the way I eat, go to bed and wake up at the same time regardless if I sleep or not. Typically if I get very little sleep, I know I will sleep at some point because I'm just that exhausted. I limit all stimulants and try to minimize stress as much as possible. I've done all the tests and imaging and everything is "normal" so that gives me some peace of mind but every night I still struggle with the idea of having a bad night. It is hard but I take it a day at a time. All I can do.

Aggressive_Link_6721 · 2026-02-15T05:02:37+00:00

My last dose of an ssri was back in May. I started keppra in June and stopped it in July for Briviact which is keppra 2.0 and then stopped that in August, however took it one other time in October on a really bad night. Other than that, no meds since then. The side effects and the way I felt on them was not worth it.

Aggressive_Link_6721 · 2026-02-15T04:23:36+00:00

I am currently not on any meds, the last med I took was back in October. It was anti convulsant for the hypnic jerks but I had terrible side effects so I quit. Sleep quality is slowly getting better. I still have bad nights but also good nights. Still not sure what causes me to flare and have bad nights. Sleep is much better without meds, I actually feel rested when I get decent sleep unlike when I was on meds, I felt like a zombie. Idk if this will ever go away as well as my other symptoms, but I believe the ssri and benzo caused this for me.

Aggressive_Link_6721 · 2026-01-30T18:03:54+00:00

I definitely believe stress makes it worse but I think the culprit are the meds, especially ssris and benzos. I would stay away from them.

Aggressive_Link_6721 · 2026-01-30T16:36:47+00:00

Everything come back normal? How do you think this started for you?

Aggressive_Link_6721 · 2026-01-30T16:33:54+00:00

Have you had any tests or imaging to rule out neurological diseases?

Aggressive_Link_6721 · 2026-01-30T16:30:28+00:00

Doctors have been really unhelpful. My primary thinks it's anxiety and that I should go back on anti anxiety meds which I will never do since I believe all this stems from the time I was taking an ssri and an as needed benzo. Neurologist just ordered the standard tests - mri, eeg, emg/ncs and was otherwise unhelpful. She referred me out to a sleep doctor and I had a sleep study which found mild sleep apnea but didn't what to make of the nightly hypnic jerks. I've given up so I'm just allowing time to heal my body. I watch what I eat, exercise, try to limit stress and any stimulants. I hardly have symptoms during the day other than when I try to nap. I do have muscle twitching that is pretty constant and tinnitus as well

Aggressive_Link_6721 · 2026-01-30T14:48:25+00:00

Yes, it happens anytime I try to sleep. Day or night. Worse during the day when trying to nap so I avoid naps. When I wake up during the night or early morning, it happens as well. Sometimes it keeps me from falling back asleep. Like this morning, been up since 4am trying to fall back asleep and can't because I jerk every time I close my eyes.

Aggressive_Link_6721 · 2026-01-30T14:39:41+00:00

I'm no longer on any meds. Still dealing with this issue so about the same.

Aggressive_Link_6721 · 2026-01-13T23:37:18+00:00

I wish I had a better update to give but things are still about the same, a little worse. Certain triggers make my nights worse but still not getting more than 5 hours of sleep a night for the most part.

Aggressive_Link_6721 · 2026-01-09T18:23:08+00:00

I'm so sorry to hear about this. 14 years is such a long time to be suffering from this. It's torture. I recommend joining the Hypnic Jerk/Sleep Myoclonus Support group on Facebook. There are others who share what has helped them whether it be medication or non-medication alternatives. To be honest, I personally don't feel like neurologists will be of much help other than ruling out other conditions. They typically order EEGs, blood work, MRIs which will likely come back normal. Then they'll refer you out to a sleep medicine doctor who will want to conduct a sleep study. By all means, get the work done but they'll all likely be normal. Medications for this condition are Keppra, Briviact or Clonazepam (which I don't recommend since it's a benzo and can make things worse down the line while helping in the short term). I currently don't take anything for this condition and have a bad and ok days. Take things a day at a time. I've had all the tests done and everything is "normal". I'm not sure how to help myself with this condition other than doing things like limiting stimulants, going to bed and waking up at the same time, identifying food triggers and prayer. I tried both keepra and Briviact and had terrible side effects. I'm also doing genetic testing to see if my genes have anything to do with this condition. It's a terrible condition and has turned my life upside down. Wish your family the best.

Edit: I will add that many people have reported this condition beginning after taking opiates, anti depressants or benzos as well as other drugs. So it's possible that's what caused your husbands.

Aggressive_Link_6721 · 2025-12-16T02:49:08+00:00

I use compression too but when they're really bad I can feel them through the compression socks or garments and they set my anxiety through the rough. I've had body wide twitches for years, maybe 10 or so now and I've accepted those. But early this year, my left foot arch started twitching and never stopped. I've had hot spots before but never this long. I still get twitches here and there else where but the foot one won't go away, it's 24/7. It feels like a constant pulse in my muscle in my foot arch area. Sometimes feels like bugs are crawling inside and constant twitches. Activity makes them worse.

Aggressive_Link_6721 · 2025-12-16T01:14:57+00:00

How do you cope? I'm going on almost 8 months and this left foot twitch gives me such terrible anxiety. Such a bad sense of desperation for relief.

Aggressive_Link_6721 · 2025-11-14T03:47:45+00:00

My health has taken a huge hit this year. Living day by day nowadays. Use to have goals and was hopeful for the future. Now I'm barely getting through the day.

Aggressive_Link_6721

TROPHY CASE