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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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  • 5 months later...

Last week I experienced what I can only describe as sleep paralysis. I was also getting hit with cluster pain during the paralysis. Fortunately the pain was only around a 5-6, but all I could do was let out a low moan. It was terrifying.

My mother, who's also a clusterhead, has had similar experiences. She recently had a sleep study done (without EEG) which resulted in a sleep apnea diagnosis.

I'll be signing up for a sleep study soon.

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@dmlonghornI have sleep paralysis pretty regularly. Only when I fall asleep on my back. But I suffer from stomach issues so it’s more comfortable that way. If I hit deep sleep while on my back I will almost certainly get sleep paralysis. I had it last Saturday actually. Only ever lasts about 30 seconds to 1 min. Never had a headache during though. THANK GOODNESS. 

Kat

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It was about a year and a half ago that I met the ‘kid’ on the video during a patient day in the neurological centre. Although his young age I was surprised how much he already knows about CH, but also that he was frank and open about the things science does not know yet. He said that O2 really helps, but they just do not know why?, is it because of the cold airflow up the nose, or that there is somewhere in our system a ‘switch’ that signals that enough O2 is in our blood and that the blood vessels can be contracted again. 

Anyway, they would like to start conducting scientific studies in a cross functional way, combining neurology between CH and Sleep, as they already highly suspect that there is an interaction between them. I said I would like to list for this because I am chronic, have severe OSAS and both my neuro’s also have the impression that these things tie together. Insomnia is a condition they know is related to this too. In the past years I’ve taught myself not to lie on my back as this blocks my airways in my sleep, I do have a custom designed dental brace that I wear at night to prevent obstructing my airways, but a CPEP can be used also if you suffer from apnea. Also during the weekend, my wife and children are watching over me not to fall asleep mid day as this will inevitably lead to a very rapid REM sleep and CH attack.

Anyway, this young neuro is very ambitious and has the support of one of the leading neurological centres here in Holland.

I do hope that in his lifetime he is able to crack the CH puzzle, maybe too late for us, but at least for later generations.

Alex

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