I'm a new member with chronic CH for the past 18 months. I've read that capsaicin cream can be helpful for CH, but I can't get it anywhere. I made my own by following a basic recipe I found online, for back pain. By simmering a tbsp of chili powder with a cup of olive oil. Put that mix in a jar in the fridge and when I started to have a cluster, I would take a tbsp of the mix, swish it around in my mouth for about a minute and swallow it. I think it might have helped (placebo effect?) for a few CHs, but it's no guarantee. I also did a mix of the above, plus strong coffee and ginger, all simmered together. It was actually delicious, but I don't think it helped much. On clinicaltrials.gov I saw a CH study with a nasal capsaicin spray, but the trial was stopped and I've read nothing about any trials since then. It appears that some drug stores might carry capsaicin creams, but they're for back pain and typically include all sorts of other ingredients for back pain, which could make the CHs worse, especially if you're hypersensitive to odours around a CH.
I also read that apple cider vinegar might be helpful with neuralgia and nerve pain. So I made a mix of 70:30 water and ACV, stuck it in a glass jar in the fridge. As soon as I get shadows, I take a sip from the jar, swill it around in my mouth, spit it out, then chase it with cold water. I do this up to five times. Sometimes it helps, I can avoid an extreme attack, or cut it down to less than 10 minutes. I also put straight ACV on a cotton pad and apply directly to the throbbing temple, and to the skin outside the nasal cavity. (I don't put it up my nose.)
I do this while doing a sort of "Bohr" effect breathing technique, which is supposed to increase the efficacy of oxygen, by increasing red blood cells. This is one video showing the technique, but when the CH hits extreme, I double the number of inhales/exhales to get more oxygen. https://www.youtube.com/watch?v=UZKivmRajgE Sometimes I do squats in place while I do the above. (It's hard to run around when I have to keep my eyes covered from light sensitivity.) But I do wonder if this diverts oxygen and red blood cells to my muscles, away from my head, which might cause increased vasodilation?
Anybody used any of the above as DIY hacks to curb CHs? The ACV is easy to tote.
I plan to start on the oxygen therapy protocol one of these days. But so far my clusters are extreme for about 15-30 minutes (and I'm lucky that I typically only have one per day) and I'm not sure if oxygen will help since I read that it can take 15-30 to get relief.
I just started the vitamin program, though I'm only at 5,000 IUs of vitamin D daily (and the required combo of cal and mag) right now.
Thanks for any feedback. This forum has provided me with incredible info and support for the past year. At first I wanted to believe the pain was due to an impacted max wisdom tooth. And the lidocaine sure did help for a few days post-extraction. But then I had to face the music. For 18 months I've taken none of the meds recommended for CH, and learned a lot from this group about which ones to avoid. I dream of remission, even for a month. Yet I realize I'm incredibly fortunate to have one per day, and sometimes a day off in between. Once I had four in a 12 hour period. My definition of grateful sure has changed since the CH started.