CHsince99

Thanks, Andrew. Would you please give me a recommendation on the CBD oil to try?

I gradually reduce my caffeine intake to a couple cups of coffee per day when I'm not in a CH period. I ramp up the caffeine during a cluster period. (The one time in recent decades that I went completely off caffeine, I suspect that I started a cluster period.) During a cluster period, if I go too many hours without caffeine, the shadow comes back and reminds me to take more. As an update, I only had to use oxygen once over the last two weeks. Approx 500-600 mg of caffeine/day seems to be working.

CHfather: Thanks for your note on zinc. At a minimum, I'm going to start by taking a daily multivitamin that was recommended by a previous doctor, called "Physician's Daily + D3", which contains 25 mg of Zinc Citrate and then a second supplement of 30 mg Zinc Picolinate. I'm kind of skeptical that the body would absorb any more zinc.

Thank you for the above posts. Will let you know if I have any luck. I also asked my doctor at the headache clinic about it.

1. Alcohol consumption increases adenosine. https://pmc.ncbi.nlm.nih.gov/articles/PMC6826818/ 2. High-flow oxygen reduces adenosine. https://www.frontiersin.org/journals/physiology/articles/10.3389/fphys.2020.00097/full 3. Caffeine blocks adenosine. https://pubmed.ncbi.nlm.nih.gov/20164566/ 4. Adenosine has been associated with cluster headaches. https://pubmed.ncbi.nlm.nih.gov/38127692/ Therefore, I think I'll try reducing adenosine. Coffee is not the only thing that is supposed to work for that. https://selfhacked.com/blog/adenosine-risks/

Hmm. That makes me think it's option 4. Maybe oxygen works because it hyperoxia (too much oxygen) reduce adenosine levels. (See below study.) https://www.frontiersin.org/journals/physiology/articles/10.3389/fphys.2020.00097/full

I'm currently in a cluster. Drowning myself in coffee just helped me go 6 days in a row without a CH. Caffeine constricts blood vessels by blocking adenosine. Adenosine is a neurotransmitter that dilates blood vessels. The below study seemed to show a connection between CHs and adenosine. Things that make you go "hmm" . . . https://journals.lww.com/pain/abstract/2024/06000/induction_of_cluster_headache_after_opening_of.11.aspx

High-flow oxygen works in 10 minutes for me every time. But why? What is it doing? 1. By constricting blood vessels, does it reduce the pain signal sent to the brain? 2. By constricting dilated blood vessels, does the oxygen relieve pressure on the irritated nerve? 3. By causing a different mix of neurotransmitters, does it calm the activity of the irritated nerve? 4. Something else?

Bejeeber -- Thanks for helping think through this. Like you said is common, I've been hardest hit when I'm sleeping in the middle of the night. At least for me, I think it's at least partially because it is the one time I'm not taking caffeine. Also, blood vessels dilate on and off during sleep. [Insert hands in the air "who knows" emoji.]

Thank you each for your replies. Who knew neurology could be so complicated? Hang in there, Kevin. Thanks for sharing. I'm currently in a cluster too. Thankfully, I've managed to go the last six days without a full-blown CH, by drowning myself in coffee. Needless to say, too much caffeine and no alcohol made me more Scrooge than usual but I'll obviously take that over a CH.

Boost Oxygen was a life-saver for me when I was traveling. Getting oxygen from my normal prescription supplier, Apria Healthcare, is sometimes very difficult. I'm was extremely thankful to find Boost Oxygen at a CVS when I needed it in a pinch. Yes, it is not economical and, yes, it is not as pure. But it still worked for me in 10 min by essentially hyperventilating a whole can.

I've suffered from CHs for 25 years. They used to occur every year or so and last 8 weeks. Like many CH sufferers, I'd rather "check out" than face a full-blown cluster without oxygen. Thankfully, high-rate oxygen always works for me in 10 minutes. I've been able to skip a few years by doing the following: at the first indication of a shadow, completely cease both alcohol & exercise, and start taking 100 mg of caffeine every few hours. My neurologist told me that there is not only one pathology for CHs. I guess there are different types. For whatever type I suffer, during a cluster period, vasodilation sparks a CH and vasoconstriction can prevent/abort a CH.

Yes, caffeine is a great vasoconstrictor. My clusters also last about 8 weeks. (Almost every year or so for 25 years.) But I don't know what a mild CH feels like -- I'd rather "check out" than face a full-blown cluster without oxygen. I've been able to skip a couple years by doing the following: at the first indication of a shadow, completely cease both alcohol & exercise, and start taking 100 mg of caffeine every four hours.