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In 2015, I suddenly lost the ability to fall asleep naturally. This was before I had any headache issues. I was just awake for 72 hours straight and went a little nuts. I got a sleeping pill prescription and became completely dependent on them to fall asleep every night. Within a few months, my doctor of course was pushing me to wean off the pills, but it was impossible. So I got a MRI. And the results showed a bunch of lesions on the hypothalamus. It was assumed that was the cause of the sleep problem, and I was monitored from there for MS. It did not proceed to MS. My ability to fall asleep returned extremely slowly. It took about three years to be able to fall asleep naturally 2 out of three days. In 2019 I got a headache condition like hemicrania continua, but minimally responsive to indomethacin. I hadn’t really felt “sleepy” since 2015. But when I started using psilocybin, I got this delicious sleepy feeling afterwards that was just lovely. It’s really nice.

The bleeding and length of some of her attacks are out of norm. Plus she says she gets no relief from O2. It may be she's not getting high enough flow rate, etc. While the description is consistent with trigeminal nerve, that doesn't mean the mechanism is the same. She absolutely needs an MRI to exclude other causes. If it's atypical CH, she needs a specialist better able to manage it, I think. julie