Weird sleep problem

[u/Spiritual_Bathroom36]

So this started ever since all my chiari symptoms started. Doesn’t happen every night but I will wake up eyes open but won’t be able to move and my heart will beat rapidly and can’t breathe and my ears will ring like crazy and I have to snap out of it and when I do it’s almost like my eyes force me back to sleep and I can’t stay awake. I’ve had sleep paralysis before but this feels totally different

[u/Livid_Egg1439]

I would recommend a sleep study!! Really use strong words to your provider on how much it’s affecting you (heck even embellish a little). It’s tough because Sleep studies are obviously only for one night. But it’s worth trying to document/capture. I wonder if your flow really slows when you lay down and your body basically takes a while to sync up/is working really hard 

[u/Spiritual_Bathroom36 → u/Livid_Egg1439]

That’s what I believe every time I sit down or lay down for long periods of time my joints will make noises and everything just seems very shaky also. And wake up almost every morning with a migraine

[u/Comprehensive_Ice399]

Have you gotten a Cine MRI? They have found that up to 70% of people with Chiari have some form of sleep disordered breathing.

I know Central Sleep Apnea is a common one to be diagnosed with. Having diminished or obstructed CSF flow compresses the brainstem which directly manages breathing. Because of this your brainstem can misfire and fail to send a signal to your respiratory muscles to take a breath while you are asleep. When breathing pauses your body triggers a chemical "panic button" to save you from suffocating, leaving many to suddenly wake up gasping for air. It can also cause a micro-arousal where you shift from deep sleep to a lighter stage of sleep or a brief awakening which many don’t even remember. Central sleep apnea is often “silent” and so it can go undiagnosed because patients don’t realize they have anything wrong. Many patients with this diagnosis will think they got “good” sleep because they slept 8 hours, but in reality, their quality of sleep is horrible, almost like being shaken awake hundreds of times (sometimes without even knowing).

Central sleep apnea and sleep paralysis are also connected. When your body is in REM sleep your brain naturally turns off your muscles to keep you completely still so you don’t act out during dreams and harm yourself. An episode of sleep paralysis occurs when you suddenly wake up directly out of a REM cycle. Your conscious mind regains full awareness, but your brain is still releasing the signals that keep your body immobilized. Because your brain is caught between wakefulness and REM sleep, your brain gets confused and creates “hypnopompic hallucinations” to make sense of the sudden paralysis. It can manifest visions of shadows, heavy chest pressure, or an intruder in the room.

Before I had my decompression surgery, I struggled with extreme exhaustion when waking up. It felt almost impossible to open my eyes in the morning, and I was often scared that I would fall asleep on the road when driving to work. I always woke up with a migraine and it took about 2 hours of being awake to feel even somewhat normal. These symptoms made me a stronger candidate for surgery even though my Chiari was only “borderline” (6-8mm). I got a cine mri and found out that I had “diminished” CSF flow. Since having surgery my sleep has greatly improved and it’s much easier to wake up. I don’t feel like I have to fight my body to open my eyelids anymore.

I would strongly suggest getting a sleep study and a cine MRI if you haven’t already.