Potential breakthrough on cause of cluster headaches

Not directly ME related, but an interesting article on nrk.no today about a new intervention that could help some people with cluster headaches (the really horrible ones that show up every single night and make people want to commit suicide).

Apparently a significant portion of those patients appear (study ongoing) to find relief by using a CPAP at night, and while some of the patients have mild sleep apnea not all of those who found it helpful do. The theory is that breathing and oxygen supply during the night is somehow related to the triggering of the cluster attacks.

When I crash badly (as opposed to ‘just’ triggering PEM) I get horrible cluster headaches that at their worst lasted for days and left me completely paralyzed with pain. Reading the article I count myself lucky that I was never as badly afflicted as some can be, and that they have lessened/disappeared as I pace better.

I know I’m not the only PwME to get cluster headaches/migraines, so I found it interesting that oxygen supply seems to be related. Several researchers have commented that ME can look a lot like asphyxia, so I wonder if reduced oxygen saturation during a crash/PEM trigger these headaches in some PwME.

Article in Norwegian: https://www.nrk.no/viten/xl/til-kamp-mot-de-ekstreme-hodepinesmertene-1.14293867

Google translate: https://www.nrk.no/viten/xl/til-kamp-mot-de-ekstreme-hodepinesmertene-1.14293867

 

I used to get oxygen (massive cylinder on a trolley) on prescription. Helped to stave off on-coming migraines.

 

I’m trying CPAP again, after failing with use of mandibular splint for mild-mod sleep apnoea. The mandibular splint messed with my TMJ disorder too much. I did persist with it for a couple of years (as the splint & followup is expensive) until the whole situation became intolerable.

I am also am a migraine sufferer but having success with taking daily Vit B2 (Riboflavin) as a preventer.

Having tried CPAP before, I knew what I was up for. I’m determined to try it for a few months this time. I’m on my first week! Struggling...

I have so many issues it may or may not impact, aside from sleep apnoea...(Daytime sleepiness, cognitive issues, fatigue, muscle & tendon weakness, myalgias, dysthymia/chronic depression that is treatment resistant, insomnia/hypersomnia...)