Anyone have Cluster headaches? What helps?

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.

@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.

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.

Hi, I am a 6 year veteran of Chronic Cluster Headaches. I am waiting to have Deep Brain Stimulation Brain Sugery here in Canada.
Has anyone here had it for the same disease? I am a wealth of knowledge within my disease. Done my research, have several videos on youtube and if anyone needs to talk, I am here.
I am a survivor not a statistic. I am a person in a situation not a victim.

@kgking101 - welcome to Mayo Clinic Connect. Sorry to hear your cluster headaches are such that you have never experienced such agony in your life. Having it be so bad you wish you would pass out is intense pain.

I'm hoping others who've talked about cluster headaches here such as @mnvo96 @jennieb @robertklauscher @slefman @taterjoy @joeratliff @sonofpicard @chipshot will chime in with any help or advice for controlling the pain from cluster headaches.

kgking101, have you encountered anything that brings you relief, even temporarily?