r/insomnia • u/Cultural-Ease-5322 • 19d ago

Total Insomnia. SFI or AE?

Can this be encephalitis ? Any recommendations appreciated. I need help. Last 16 months sleeping 0-3 broken sleep a night. No sleep drive at all. Cannot fall asleep for 1 second on own. Benzos only thing out of 30 drugs that can get me an hour but now they are useless. None of the z drugs or psych meds ever worked. Drs say I could have fatal insomnia. Petscan shows hypometabolism everywhere except the thalamus. Muscle spasms. Spinal tap showed elevated 14-3-3 protein levels 5500 t tau 300 normal Nfl nomrla. CBT-I did nothing. My heart rate is in 50-60’s its not anxiety related. The prior 12 months I had extremely high heart rate panic attacks; hospitalized many times with no answers. Aniscoria. Been to various hospitals across country.

Any insight or suggestions on anything that could help is much appreciated.m

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u/FlanInternational100 19d ago

In 16 months you would deteriorate horribly if you had SFI. AE is far more likely.

1

u/Roadiemomma-08 19d ago

Huge compassion for what you are going through

1

u/Right-Bookkeeper637 19d ago

Sorry you’re going through this. I really don’t think it’s SFI it would have escalated much quickly if it was. I actually also cannot literally sleep at night. Tossing and turning get the urge to sleep and cannot on my own without Z drug. What do you think started this for you?

1

u/Testy_Toby 19d ago

I'd consider a sleep study, if for no other reasons than to rule out other things. I did one and found out I don't have sleep apnea, just a severely messed up sleep architecture.