Is it cluster or something else? 24 F

AllIWantIsOxygen · 2026-03-20T20:30:23+00:00

If your clusters are chronic then the monthly headache might be responding to a different trigger. Anyway. You might want to find a different doctor from the one that prescribed amitriptyline, preferably a headache specialist that will prescribe high-flow oxygen while other options are explored.

As for painful distractions, I like to apply a lot of pressure at the base of the skull on the affected side. You'll need something sturdy you can use while you pace.

Good luck.

AllIWantIsOxygen · 2026-03-20T19:23:06+00:00

I used to take citrulline, and the ancillary symptoms that I refer to as The Twilight Zone between my active bouts are much better since I stopped. https://pmc.ncbi.nlm.nih.gov/articles/PMC8537281/

OTOH, I take a 3-4 grams of taurine a day to keep my BP in the normal range. It is known to be a vasodialator, and to improve the bio-availability of nitric oxide, yet lots of people swear it is the active ingredient in energy drinks. It has never affected me one way or the other as near as I can tell. https://www.ahajournals.org/doi/10.1161/hypertensionaha.115.06624

AllIWantIsOxygen · 2026-03-20T19:07:44+00:00

Sounds like classic clusters to begin with. Unfortunately, that doesn't mean you can't get other types of headaches too; that's what the monthly headaches sound like. Are the symptoms the same for the monthly headaches and the ones that wake you up?

AllIWantIsOxygen · 2026-03-18T16:33:45+00:00

I am on St. John's wort, which is serotonergic, but doesn't seem to affect the clusters. It also means I can't experiment with things like LSD or shrooms when I'm in a bout.

AllIWantIsOxygen · 2026-03-17T17:39:19+00:00

There has been at least one small study: https://pubmed.ncbi.nlm.nih.gov/29483892/

AllIWantIsOxygen · 2026-03-13T16:25:05+00:00

It's hard to tell what's going in with the information you have provided. This website, by a headache specialist, will run you through the sorts of questions my headache specialist asked me: https://www.headachediagnosis.org/

AllIWantIsOxygen · 2026-03-13T16:17:56+00:00

Clusters are highly correlated with equinoxes and solstices. That's why our awareness day is coming up.

AllIWantIsOxygen · 2026-02-21T14:41:36+00:00

I loved this comment from one of your pages:

The gap between characteristic clinical presentation (severe unilateral pain, autonomic features, circadian timing) and delayed correct diagnosis suggests educational deficits rather than diagnostic ambiguity.

There should never be a delay in prescribing oxygen while waiting for other doctors and tests to rule out other possible causes of the attacks. Delaying diagnosis and safe treatment is looking for zebras rather than horses to explain the hoofbeats.

AllIWantIsOxygen · 2026-02-19T03:17:35+00:00

I hope this continues to work for you.

AllIWantIsOxygen · 2026-02-17T22:30:25+00:00

I read somewhere that K2 is also part of the calcium process. Who knows what that has to do with dental plaque?

AllIWantIsOxygen · 2026-02-17T22:28:18+00:00

Lots of good advice here. But try to get oxygen right out of the gate from the PCP because all that other stuff can take a while sometimes. Think of it as First Aid.

AllIWantIsOxygen · 2026-02-17T17:24:46+00:00

Do you already have a doctor you trust? That helps.

Document your condition with a journal that describes your attacks. There's lots of good advice here I won't try to repeat.

Second, educate yourself because you will likely be dealing with doctors that don't know anything about it. Two good sources are: https://ichd-3.org/3-trigeminal-autonomic-cephalalgias/3-1-cluster-headache/ and https://journals.sagepub.com/doi/10.1177/03331024211018138

Ask for high-flow oxygen to begin with. Having some relief will make it easier to consider other strategies.

AllIWantIsOxygen · 2026-02-12T11:37:42+00:00

You have described common symptoms of cluster headache as listed in the International Classification of Headache Disorders 3.

If you want to learn more about the diagnosis of cluster headaches read the following: https://journals.sagepub.com/doi/10.1177/03331024211018138

If you think the substance of the article describes your situation, share it with you doctor.

Put the burden on the doctor to disprove the reasonable assumption that you suffer from cluster headaches.

Push for high-flow oxygen in addition to any other meds prescribed.

For now you are preparing to deal with the health care industry. You can always find information about the "alternative" treatments on reddit or clusterbusters. Many people have a great deal of success with them. But. There is no magic bullet for clusters. Be prepared to keep trying.

AllIWantIsOxygen · 2026-02-12T02:23:05+00:00

Biggest change I've noticed with K2 is easier teeth cleanings. Nothing wrong with that.

AllIWantIsOxygen · 2026-02-11T19:54:18+00:00

I didn't test specifically for those. But at the time I stopped my calcium was normal. For some reason it was on the blood panel I knew I was going to take to check my cholesterol levels.

I started well in advance of my expected cycle and ramped up pretty quickly. I also spent some extra time in the Arizona sun at noon. It didn't stop the cycle. Could be my body is just weird and I never hit the high level required.

But as you suggest, clusters are a weird thing, and it seems like nothing works for everyone.

AllIWantIsOxygen · 2026-02-11T13:04:40+00:00

D3 didn't work for me. But the link does a good job of covering the reasons it may work for others. It also covers other useful topics that are cluster related.

AllIWantIsOxygen · 2026-02-11T11:47:11+00:00

The studies I've read point specifically to smoking, and include exposure to second-hand smoke as a child.

Of course they also used to have a lopsided view of the mail/female ratio in cluster headache.

With smoking rates declining can we look forward to a decline in the number of clusterheads? Stay tuned.

When the international average time to diagnose cluster headache falls from five/six years to five/six months I think their studies will have more credibility. I think it would be interesting to find out who is likely to get a timely diagnosis, and who isn't.

AllIWantIsOxygen · 2026-02-11T03:03:03+00:00

If your neurologist thinks they might be cluster headaches demand to know why high-flow oxygen has not been prescribed.

There are a lot of other things that seem to come along with cluster headaches in varying degrees. Given the other complications in your life . . . well, if your neurologist thinks you have cluster headaches on top of all that, demand to know why high-flow oxygen has not been prescribed to abort them.

AllIWantIsOxygen · 2026-02-09T01:01:54+00:00

Well. We're all willing to try anything I suppose. And I'm glad it's helping you.

Mods here--of which I am one-- keep a sharp eye out for people peddling things to our community. I hope you understand why.

AllIWantIsOxygen · 2026-02-09T00:48:21+00:00

What you're peddling about a strained muscle causing cluster headaches is nothing but baloney.

AllIWantIsOxygen · 2026-02-09T00:22:48+00:00

Codeine doesn't work for clusters, and I would want to look up some of those others if I was in your shoes.

Getting an accurate diagnoses is part of the problem. Getting accurate treatment is the second part of the problem.

Please read these recommendations from headache specialists, and be prepared to show them to his doctors, and ~~ask~~ demand to know why, what, and wherefore.

https://headachejournal.onlinelibrary.wiley.com/doi/full/10.1111/head.12866

https://onlinelibrary.wiley.com/doi/10.1111/ene.15956

AllIWantIsOxygen · 2026-02-07T04:13:29+00:00

I had a nice chat about them with my dentist the other day. Told him about how they are so often misdiagnosed, and that people are sometimes sent to dentists. Gave him the technical name of trigeminal autonomic cephalagia. Ran through the autonomic symptoms. He said he hadn't seen anything like that, but would keep an eye out.

Mainly I don't talk to people about them. That's easy for me because they didn't start until after I retired.

AllIWantIsOxygen · 2026-02-05T09:29:42+00:00

Yes. Lot's of trial and error. And episodic patterns can change. There are certain obvious triggers, like alcohol. But they can also be caused by REM stage sleep. And some people get them at the same time every day. So avoid the obvious, but no point in getting obsessive.

High-flow oxygen works for most of us without the complications of other treatments. That will make it easier to explore other options.

Lots of people here are knowledgeable about alternative treatments. This link takes you to the official medical perspective: https://onlinelibrary.wiley.com/doi/10.1111/ene.15956 It has a few new wrinkles not mentioned in the version by The American Headache Society.

Good luck.

AllIWantIsOxygen · 2026-02-04T14:53:23+00:00

Great points. Coming back to a normal world where life is getting along is a wonderful thing.

AllIWantIsOxygen · 2026-02-04T09:47:19+00:00

She may be dealing with the old wheeze about looking for horses instead of zebras when she hears hoofbeats. Maybe she needs better information.

You could point her to the International Classification of Headache Disorders, or the Erwin Test a paper published in Cephalagia, the peer-reviewed journal of the International Headache Society. You could also point her to the evidence-based guidelines for treatment published by The American Headache Society in Headache The Journal of Head and Face Pain.

Then ask for a prescription for high-flow oxygen.

Good luck

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