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ClusterBusters
Dr. Julie

Sleep and Cluster

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A few people were interested in my comments on sleep and psilocybin. I first began looking at it because it linked in with PTSD/REM-behavior disorder and the hypothalmus, both of which are elements of the rare sleep disorders my son and I experience, and of course for many CH patients their attacks seem to have a relationship with REM sleep, let alone also originating in the same area of the brain. 

For your interest, here's a brief commentary from a neurology researcher on cluster and sleep

 

 

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Nice video! I have wondered about the REM part for a long time, as my Nocturnal hits begin within ten minutes of falling asleep. Which seems pretty early if attached to REM. However, I also have dreams that begin that soon too. :(

I really want to be around when they figure CH out and have the answers we so desperately want! 

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Thanks for the video.  My observations

 

1) Sleep is truly affected by clusters (or do cluster affect sleep)

2) We have much to learn about the relationship of sleep stages to precipitating clusters

3) Yes it is scary to sleep during cluster cycle but avoiding sleep makes it worse

4) I am getting very old if that "kid" has 2 post doc degrees

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https://snoringhq.com/blog/sleep-disorders-and-the-cluster-headache-explained/

https://pubmed.ncbi.nlm.nih.gov/15186306/

https://mhni.com/headache-pain-faq/cluster-headaches/cluster-headache-sleep

get a sleep lab studyw. then an Airfit10 CPAP. Try the nasl pillow mask with the tub entering at rthe top: you can toss and turn or cuddle your honey, or your dog if that's different.

HTH,

ad lux

 

@Pebblesthecorgi 4) could be true anyway :)))

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On 7/14/2020 at 6:15 AM, spiny said:

Nice video! I have wondered about the REM part for a long time, as my Nocturnal hits begin within ten minutes of falling asleep. Which seems pretty early if attached to REM. However, I also have dreams that begin that soon too. :(

I really want to be around when they figure CH out and have the answers we so desperately want! 

Hi Spiny,

If your perception is that you dream 'early' in your sleep cycle and if you have any other symptoms suggesting dysregulated sleep or sleep deprivation, it may be worth getting sleep study. Rapid onset REM-stage sleep is a classic feature of Narcolepsy, or if you feel like you 'dream all night' it could a result of repeated arousals during REM sleep (like me, I have severe REM-stage sleep apnea). To be clear though, if you're getting restorative sleep and not having any other sleep-related issues, it's unlikely there's any significant problem. 

I'm new on cluster science but I've become quite expert on sleep disorders over the past 20 years. Several are mediated in the same area of the brain, involving the same signaling pathways, as are described for cluster patients. I'm not surprised at all that there is overlap and I think as the science progresses we'll find sleep disorder comorbidity is more common among CH patients than not. 

 

Julie

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How very interesting! My daughter has a sleep disorder. She may be up for 22 hours and then crash for 12. And it is not 'regular' in the time of day. She does have better days and worse days. In addition, she has Ocular Migraines without pain. But the visual disturbances are severe. 

My husband 'dreams' all night. I will push for a sleep study when we get out of the current mess.

I sleep rather light. I am essentially in 'mommy' mode' for and old dog and and old cat. So I expect that. I do have periods when I hear nothing and my husband hears the critters. 

Sleep deprivation I seem to cope with fairly well. In cycle, I get two hours of sleep per 24 hours most days. That, combined with a 6-8 month cycle, should have made me comatose. But, I just got really short tempered and carried on. I did however inform all that there would be no Santa the next time. ;)

 

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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.

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