Dementia terrifies me. My dad died last year with Lewy Body Dementia. After witnessing this, I totally understand why Robin Williams decided to end his life.
Had I not found the cause, I would still be popping Advil almost daily. Of course, my issue and solution is almost certainly vastly different from yours or any other person, but the key was finally discovering the underlying cause. That was the tough part.
All that said, the damage has been done, hopefully the dementia doesn't set in anytime soon. My mother just died this year with dementia, it was NOT an easy ride.
I'm very sorry to hear about your mom.
Ibuprofen, Tylenol, and indomethacin have never helped me for cluster headaches, often leading instead to rebound headaches of a different kind. The three things that help me are oxygen, sumatriptan injection, and verapamil.
The number one thing that helps stop my episode is oxygen: 15Lpm or so of pure oxygen through a non-rebreather mask. A concentrator probably won't do the trick. If you have daily episodes, you can go through an MM tank in a month.
My second choice is an Imitrex (sumatriptan) injection with a STATdose pen. Pills are worthless. The 4mg dose is just as effective as 6mg, so I can take three doses if I'm having a bad day. (The daily limit is 12mg.) They sometimes make me feel funny, and the headache occasionally comes back in an hour or two.
Verapamil helps reduce the frequency and intensity of my headaches. It has a tendency to lower my resting heart rate: I was below 40bpm one morning, and I'm not a runner.
Good luck. Clusters aren't fun.
https://web.archive.org/web/20210119212133/https://vitamindw...
If you decide to try Verapamil make sure you get the extended release pills. I don’t have the link handy but you can find research journal articles that help nail down dosage. As for the oxygen, you may have to get your own regulator and mask to get what you need. 15lpm and a rebreather mask works amazingly for me. If your doctor is difficult about it just get them to write a script for oxygen, find a local supplier and pay out of pocket. It was only $80 to rent the tanks I needed to get me through my last cluster season.
A couple of home remedies I’ve tested and found effective were cardio and putting my feet in some super hot water. Both sound silly but seem to work in my experience. So if you don’t have the other stuff yet, or aren’t able to get to it in time, give either a try. I do burpees as soon as I feel one coming one (and after I’ve chugged a 5 hour energy).
The last and most effective solution is LSD or Magic mushrooms. If you micro dose then periodically you can go a lot longer between cluster headaches. A tiny bit of mushroom also seems to work as an abortive for me when I feel one coming on.
I’m still experimenting and learning. But hopefully this info may give you some things to research or try (assuming you haven’t already, but I’d much rather share this information repetitively then not share something that could help you).
Feel free to reach out if you ever want to chat. Always down to provide research I’ve found out just lend an ear, I know how debilitating and isolating they can be.
I take quite a lot of vitamin D (6000 IUs daily), cetirizine (zyrtec), and nicotinamide riboside (300 mg), and a cheap multivitamin. I'm a little wary about adding stuff to that but I'm definitely going to look into all the things you've mentioned.
Psychedelics are super interesting to me but I really wouldn't know where to start. I'm 53 ferchrisakes. Last time I was around people buying mushrooms was 35 years ago at a skate park.
> just lend an ear
Say... that reminds me. Tinnitus isn't something you are dealing with as well, is it?
One last thing worth looking into is the link between vasodilation and cluster headaches. There seems to be a direct link. I think some of the theories are that the dilation of the major blood vessels in your brain pushes down on nerves like your occipital nerve. That seems to track with the areas I experience the most pain. I’ve experimented in the past with vasoconstrictors as a way to ease the pain. Both caffeine and psychedelics are vasoconstrictors for example. And they seem to be the two most agreed upon remedies. I believe exercise is also a vasoconstrictor, which may be why intense cardio seems to help me when the headaches start to come on.
Not sure where you live, but while not legal, you can order micro dose (100-200mg) mushroom capsules online in Canada.