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Anyone have Cluster headaches? What helps?

Headache & Migraine | Last Active: 2 days ago | Replies (91)

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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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Replies to "Hi. I have suffered and I say suffered from cluster headaches since 1976. It has been..."

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

@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.