Anyone have Cluster headaches? What helps?

Posted by mnvo96 @mnvo96, Aug 1, 2019

Any body out has cluster headaches

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Profile picture for theirishfolk @theirishfolk

@clusterheadsurvivor
Also a six year veteran of eCH. Sumitriptan injections effective until heart palps started about a year ago. (Also take Emgality but not sure it makes much difference.) Then, went to the nasal application, and seems to - but not always - do the trick (pain gone in about 30 min.) But of course can only be used twice in 24 hours. (ij the last four weeks I have had 27 episodes, and the monthly formulary UHC limits four inhalers per month. Pain, like everyone I guess, is incredibly intense.
Questions: I hear about using O2 with some success. Anybody else found that to be true? Also contolled breathing techniques. Also reading about external devices - some medically approved, some not. Anybody used one of those?
Seems like I have gone to TMI. But any comments would be appreciated.

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Medical oxygen works really well for me along with rizatriptan for pain control.i hire oxygen cylinders from boc gas here in Australia for around $18.00 per month.

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Hi and thanks . . just got O2 - finally. Insurance wouldn't cover it because O2 is not a recognized "therapy" for CH.
Do you use on continuous flow setting (2L?) or in the "burst" setting (5L?) I am getting mixed messages from PCP an neurologist. Honestly, sometimes I think no one here has a clue what to do.
Also, nasal inihaler Sumitriptan excellent for me a few days a week, 3-4. But of course, there are the non med days (I had 27 headaches in May) and no doc has a clue what to do with those days. Am hoping that O2 will fill in the non-med gaps.

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Profile picture for jennnels @jennnels

Hi. I have suffered and I say suffered from cluster headaches since 1976. It has been 50 years this year. They came every 3 years when I was younger and in my teens and started coming every 2 years thereafter. I was not diagnosed with them until I was 27 in 1994. I have to taken everything and then some in forms of medication and the only what I call miracle drug was the imetrex injections. But you can only use them sparingly. And when you get 3 or 4 in a 24 hour period it will help with one but you are screwed for the others. They stopped when I was 47 for 8 years and I thought they were gone for good but they came back in 2024 with a vengeance. And now I am going through another bout 2026. These ones really hurt. I am taking verapamil daily 250 mg and have sumatripan tablets for when I feel a cloud but some are only 15 min and some are 1-2 hours long so I dont even know if the sumatripan is working. For me the bouts usually last 90 days. 90 excruciating days. I am now 59 and am halfway 45 days in. They do not have the injections for me anymore and so I am stuck just having to suffer through them everyday. 50 years of uncertainty is a lot on a person. I can't work during the episodes and the government does not recognize it as a disability. I have 4 daughters and two of them are only 11 and 12 and my wife gets 28 regular migraines a month so we are struggling to make ends meet when I am down. All I can say is I would not wish these on my worst enemy and hope others find the relief they need as these are the worst sort of pain imaginable. I even asked my doctor in the 99s if we could take my right eye out if it would stop the pain but sigh, no.

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@jennnels
I cannot even imagine - CAN'T EVEN IMAGINE having that totally debilitating intrusion into my life, and for so many years. For six years I was on the sumitriptan as I have written. I was limited to two injections in a 24 hour period. After two shots, if another CH one hit so bad I couldn't stand it, it was a trip to the ER, where they are required by law to treat you. It was a four drug cocktail, given IV. Worked fairly quickly. I was fortunate in that my insurance (UHC) covered it. Might be worth a call to your local hospital to see how they would treat you. (This is getting lengthy, but during my worst headache - the screaming kind - my wife drove me to the hospital and I, obviously in great pain, handed the first nurse I saw three things: drivers license, insurance card, and a paper that said "cluster headache: pain scale one to 10?: my answer 9) They took me right in.

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