Hi everyone. My name is Tami. I'm 38 yrs old. I have a 17 yr old son & a 12 yr old son. I've been suffering from Clusters since my older son was born. After several extensive tests, I have been misdiagnosed as a Migrainer. It wasn't until last year, when I was searching online for any relief of my headaches, that I accidentally landed on a site describing "clusters". It was a miracle... for once, I read of people experiencing the same symptoms as I was (as apposed to 'some' of the same). Unfortunately, many doctors out there have no experience in trying to treat such severe headaches as these. It's devistating, to say the least!
My clusters are annual spells, lasting about 2 months at a time (starting between Nov & Feb) and occur every day/ every other day. The first starts at about a 4, then each one gets progressively worse until it reaches a 10. I have about 4-6 of those & then the degree of pain decreases at a gradual pace just as it had increased. My clusters (9 out of 10 times) wake me from a deep sleep between 1am & 4am. They start with a burning sensation in my right eye & temple. It then gets unbearable at a fast pace. I sit half asleep in bed, trying to deny what's happening until I just can't deny it anymore. I rub my neck, temple, head, etc.. then the pushing, squeezing, & groaning starts. I debate whether or not to take pain killers, until I eventually remind myself that nothing will ease it anyway (so why bother). On a rare occasion, Fioricet or medical grade pot have helped slightly, but... mostly just makes me impatient and anxious for it to kick in. Most of the time I get a freezing cold washcloth (or an ice pack which gives me brainfreeze before it has any effect on my cluster) and I hold it on the spots that hurt the worst, but it never seems to be able to penetrate deep enough. I end up squeezing my head so hard, I feel as if I could crush my own skull & that would feel better than the pain I'm enduring. I pace room to room, whimpering quietly to myself, wanting to smash my head off a wall... I just can't take it anymore. I feel so alone. Not one person in my life has any idea what I go through, which makes me feel like an "attention seeker". I'm so frustrated and tired of being scared of my next attack... it controls my life during those months.. my sleep, my family, my work, everything!! Today is Monday. My first attack was this past Friday & my second (more intense) was last night. I know that discussing all of this won't help my episodes, but it feels good just the same to have people to talk to, who truly understand. Thanx for reading