Anyone have Cluster headaches? What helps?

@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?

@kgking101 I am so sorry you are being stricken by these vicious headaches. Please keep a diary/journal noting as to when (time of day) they "start," how long each lasts, and any activities, food/drinks/meds injested, environmental triggers (light, temperature, barametric pressure, etc) or other triggers (stress) that might be involved. Have you discussed wth your MD or neurologist? Have you tried any acute meds or other measures? I don't think mine are the same as yours so I'm not sure my preventatives would help you. Mine start during REM sleep, and awaken me each of 4 REM sleep intervals nightly. Extreme pain, can't sit or lay down, have to pace for hours holding my ears and eyes in place as they feel like they are doing to explode. Ends up with vomiting and diarrhea if 3 hours or more. No migraine meds helped, and no other meds or measures helped until a headache specialist (neuro) identified the pattern as Hypnic headaches, but with Cluster headache symptoms. My only relief is preventative Indomethacin nightly plus Melatonin, and taking a med to prevent gastric bleeding from the Indo. (Protonix, generic is pantoprazole). I used to also drink a cup of coffee (then later 1/2 cup) prior to bedtime which also helped. But I can't be sure what you are experiencing would respond to these treatments. I hope you can see a specialist as your headaches are extremely painful and disabling. Praying you can get help and relief.

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.

Sorry to hear what your going through as I have suffered from the same issues for the past 10 years and tried so many different drugs, scans until recently when I went to the doctors as I couldn’t cope anymore and this doctor who I’ve not seen before suggested I drop all the drugs and do neck exercises 3-4 times a day and wow! I’ve not had a migraine for the past 6 weeks, there are plenty of videos on YouTube to get you started good luck!

@lisalucier I have tried everything for the last 50 years and right now I am taking 480 mg of verapamil and they have slowed down to a couple a week instead of twice a day. Sumatrpin injections are good but are unavailable where I live. They worked wonders for me years ago. I hope this helps.

@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.

@jennnels
All I know is that I worked with a nurse who got a partial disability from the military for migraines.

Pure oxygen ALWAYS works for me.
I've had cluster headaches since about 2012 and have tried many of the drugs listed here, to no avail, and have had to live the nightmare for up to 12 hours per episode, sometimes repeated every day for months straight. Then in 2018 a neurologist suggested just pure oxygen: excellent results everytime, usually completely gone within about 15 minutes on average. (Average only - varies from 5 to 30 mins depending on severity, but always almost immediate reduction in pain). Rent a bottle from a gas supplier and have a go - very small cost for a wonderful result.

As above, Sumitriptan (nasal spray) has been a godsend after no longer being ble to take the injections (taken for years)due to cardiac side effects. Agreed that O2 is wonderful! 2L taking s l o w deep breaths inhaling through the nose and out the mouth . . . Usually will knock it out in 30 minutes.

Most of my headaches occur in the spring (about 5 weeks) and almost always at night. Usually up twice a night for the O2 regimen. Anyone else tracking their days/times of day?

I've had cluster headaches for 41 years.
Medical oxygen and rizatriptan for the pain have been the only two things that help during the attacks.