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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

I will edit my post, I think the right term is discharge (thank you spiny!) and not bleeding - there is no blood, but clear mucus (thank you online dictionary) I will pass on all replies in this thread ! I think MRI is essential in any way possible. Cluster symptoms with odd additions can be sign of something more sinister wrong in the brain and I fail to understand why it seems impossible to get these taken. I know of few people who have had a tumor, an aneurysm or such and when these are found many patients - or their families do not report these findings on communities. I doubt all neurologists are enough aware of these possibilities. So you can be sure I will also return here to report any progress and how this turns out.