[Markymark98]

I’m new to this and wanted to give some information as to maybe get some kind of insight as I’m losing my mind.

Male
White
27
5 feet 8 inches
340 pounds
I don’t drink
I don’t smoke
I don’t do drugs
Neck circumference is 18 inches
I take pantoprazole for acid reflux

I was diagnosed with mild sleep apnea in 2018

I started getting nights of constant hypnic jerks.
They started about July 28th after I had a bad bout of health anxiety and I ended up punching myself in the head to the point there was a small bump. I tried to sleep and either my shoulder would twitch hard or my stomach would jolt.

and after three nights of constant hypnic jerks they stopped for about 40 days but it’s back now. I’ll be woken up by a hard shoulder twitch or a hard stomach twitch. It sends an adrenaline rush throughout my body. That startles me and wakes me up fully.
I’ve tried Benadryl and unisom. I even tried CBD gummies.

I went to the ER on a Friday and they gave me a shot of OLANZapine and prescribed me hydroxyzine which I didn’t use that day and I fell asleep. I also slept Saturday into Sunday but as I went to bed Sunday into Monday, I started getting the hypnic jerks again. All night long. I went to an urgent care on that Monday and they recommended a psychiatrist and so I went to another er and the doctor said

Sporadic fatal insomnia is extremely rare and to take the hydroxyzine for anxiety and sleep. They gave me Ativan and so I took the hydroxyzine and then I fell asleep. I took melatonin and 50 mg hydroxyzine and I slept Tuesday into Wednesday and then I slept Wednesday into Thursday.

I had made the mistake of watching videos of people suffering from sporadic fatal insomnia and I got scared to go to sleep that night. I took melatonin and hydroxyzine and felt very tired but I ended up getting hypnic jerks and was unable to sleep. I went to the ER Friday and
I had blood work which was normal
And a normal head CT scan.

Thyroid blood test was normal and so was my b vitamin blood test.

I went home and began to get tired again. I took the other hydroxyzine and two melatonin gummies and tried to sleep but kept jolting awake again. I kept getting shivers and was really scared so 3 hours later I took Ambien and fell asleep for 11 hours.

For two weeks the Ambien worked and I had less hypnic jerks but still felt them here and there.

Other symptoms I have are

Sometimes I get muscle twitches in my face as well that wakes me up. Like a smile or something that wakes me up.

I sometimes act out my dreams.

I do get muscle twitches as well

I’m scared that it’s sporadic fatal insomnia or other similar fatal diseases.

I do have health anxiety and have been to the ER maybe 30 times since 2017.

I went to see my family doctor and he also said I don’t have sporadic fatal insomnia and that my arm muscle reflexes were normal and so was my eyes reacting to light.

He thinks it’s sleep apnea and my anxiety making my symptoms worse. A few times I will wake myself up snoring but I don’t know if that’s apnea or hyperarousel from being scared to sleep.

[hiker]

Hi Markymark98, it sounds like you are really going through it. I think all of our paths are different, but maybe something here will resonate for you. I dealt with chronic insomnia for many years and know more about it than I wish I did.

I have never heard of “sporadic fatal insomnia.” Frankly, it sounds like something one picks up off the Internet, where everyone is an expert about everything, it seems.

Is it possible you are kind of winging it on your own, rather than sticking with steady advice from a qualified physician you can trust?

My own insomnia journey includes sleep apnea as one of the causes. Lots of people have it, and lots of people don’t want to deal with CPAP machines. So they don’t, and apnea insomnia continues to disrupt their lives. There have been some technological advances, e.g. expensive implants, which let people bypass using machines, but most of us have to slog along with them. I would be quite a bit worse without mine.

A sleep study can tell you definitively whether you have sleep apnea. It measure how often you “wake up,” i.e. when your sleep cycle is disrupted even if you are not fully conscious of it. Hints that you might have apnea: your weight, and the fact that you sometimes wake up to the sound of your snoring.

Finally, not sleeping well for a lot of nights can really scramble your thinking, even to the point where you wing it and try this or that remedy on your own, and just go to ER rather than sticking with a doctor and a plan. And maybe thinking that you are a failure if you have to see a mental health professional, when actually it is a sign of courage.

Take care, you are not alone.

[Coli85]

How has your sleep been since you posted?

-Colibri

[Martin Reed]

Although it’s quite old now, this video and all the comments that go with it might be useful:

Why you jerk yourself awake every time you try to fall asleep (and what to do about it)

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If you are ready to stop struggling with insomnia you can enroll in the online insomnia coaching course right now! If you would prefer ongoing phone or video coaching calls as part of a powerful three month program that will help you reclaim your life from insomnia, consider applying for the Insomnia Mastery program.

The content of this post is provided for informational and educational purposes only. It is not medical advice and is not intended to diagnose, treat, cure, or prevent any disease, disorder, or medical condition. It should never replace any advice given to you by your physician or any other licensed healthcare provider. Insomnia Coach LLC offers coaching services only and does not provide therapy, counseling, medical advice, or medical treatment. All content is provided “as is” and without warranties, either express or implied.

[Coli85]

Martin

Thank you for the video.

-Colibri

[Author]

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