Have you tried diltiazem for cluster headaches? I got them after coming off of the medicine for heart related issues. Started taking it again and they vanished.

Nope, but I’ll look into it. Thanks!

This supplement stack + oxygen + verapamil + magic mushrooms has turned clusters into almost a non issue for me. I went through several years of being too broke to really address them, and too pig headed to think something as simple as vitamin D would help. But my last set of clusters was a walk in the park compared to the ones before it.

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.

Thank you so much for sharing all of this. I've copied it to my phone so I can refer to it later.

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?

> 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.

Not sure where you live, but while not legal, you can order micro dose (100-200mg) mushroom capsules online in Canada.

Funny you mention it, I do have mild tinnitus. It’s also interesting to mentioned Zyrtec. There’s a whole subset of cluster research/sufferers that call them histamine headaches. I’ve wanted to explore anti histamines as a treatment but now that I have mine under control I hate to rock the boat. I know the psychedelics part is a lot, but there are several ways to tackle it. Growing magic mushrooms is very easy. Some people are also experimenting with LSA, which naturally occurs in seeds you can get online. I haven’t tried it but I imagine it could be effective. Another option I’ve considered is magic truffles. They’re legal in a lot of places due to their obscurity, but they contain psilocybin just like mushrooms. A micro dose that’s almost non perceptible every few months is enough to buy me years without headaches. It’s seriously amazing. Several well respected research hospitals and universities are digging into it right now. There’s definitely something to it. I imagine it has to do with the fact that they’re linking up with your 5-HT2A serotonin receptors. I believe they’re the same receptors that common anti migraine medicines bind to. Both psychedelics and migraine medicines fall into the triptan category of drugs. I’m definitely not a medical researcher and it’s been awhile since I did a deep dive on all this, so please verify/research anything I’m saying, but I hope I can at least point you in some of the right directions.

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.

I'll look into all of that. Again, thanks for sharing it all.

Have you tried heavily modifying your diet by chance? Removing carbs, lowering inflammatory foods, dairy and root veggies. Going down to a fasting diet in the morning. I'm optimistic that I'll never feel a cluster headache again.

I’ve done a bit of research but never given it an honest go. I think you’ve inspired me to give it a try. Thanks for the idea

There is some interesting early research into psilocybin and cluster headaches: https://americanmigrainefoundation.org/resource-library/can-....

I've taken Ibuprofen for years for my recurrent headaches, and only recently (after decades) discovered that I had two underlying issues that seemingly caused them. The first was gluten intolerance, which presented as inflammation, and apparently I was also chronically dehydrated. I cut out wheat and started drinking tons of water and the headaches, which plagued me all my life, have almost completely disappeared.

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.

Dehydration is definitely one of my triggers. I think I'm fine on the gluten front (although I've never removed it from my diet). I think some dust or grass or mold allergies are another trigger of mine.

I'm very sorry to hear about your mom.

For several years, I got cluster headaches for two months every two years or so. Thankfully, I haven't had a cycle for over four years, so whatever I tell you may be out of date, and of course everyone is different. I recommend you find a good neurologist, preferably one not too old--mine kept retiring at the most inconvenient times.

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.

Lots of great information for me in this thread. I appreciate you taking the time to share all of this.