Saturday, January 3, 2015

Cluster Headaches

I'm in the throes of my worst cluster headache phase ever. If you're unfamiliar with what a cluster headache is this video will give you a very good idea. This, at times, is my reality.

Cluster headaches, also referred to as suicide headaches have been described as the worst pain known to man. They're worse than a migraine or childbirth or a severed limb. If you've ever had an ice-cream headache where there's a terrific pain behind one eye for 20 seconds you have a bit of an appreciation for what a cluster headache feels like except the pain lasts anywhere from 15 minutes to 3 hours. They're called cluster headaches because they come in clusters. In my case they typically last 4 weeks and during those 4 weeks I'll usually get only 1-2 headaches each week provided my doses of prednisone are doing their part to keep them at bay. After the headache phase has passed I'll often be free of them for anywhere between 12-20 months.

I'm not sure what to make of this current phase of headaches. They began 4 months ago in early September and have stopped and restarted twice since then. I've experienced 2 headache phases back to back before (separated by a couple weeks or a month) but never 3 phases, one after the other such as now.

When the headaches first appear I'll begin taking prednisone as a prophylactic which is usually quite helpful but there will still be breakthrough headaches that I'll need to treat with a 20mg imitrex nasal spray. The amount of prednisone I use depends on the severity of the cycle. Typically I can get by with 40mg a day but currently I'm taking 70mg and it's still not enough. I'm still getting at least 2 headaches per day even at this level and it's left me so exhausted.

I'm feeling desperate as I write this, not sure what to do, wanting to just live my normal life but unable to with this monster living inside my head and wondering when will it next make an appearance. Will I be able to discreetly take an imitrex spray if I'm in the sector and will it work fast enough to abort the headache so I can confidently do my job? The amount of time I'd need to take off from work to deal with the headaches is more than I have available to me (unless I simply retire) so I keep the fact that I'm in a headache phase to myself.

I'm in a very small minority of people who are affected by these headaches; I'm 1 in 1000. They first began for me at 17. I recall being in school and having this intense pain behind one eye that would only last 15 minutes back then but it would come out of nowhere and worry me. I'd wonder what in the world was that and why is this happening? In a month they'd be gone and it wouldn't be until I was in the Navy before I'd experience them again. I'd eventually receive a proper diagnosis in the early '90s and given prednisone and imitrex to help manage them. Prior to that I was really on my own to just deal with the pain, meaning, I had no help at all. They were very upsetting especially since I had to maintain my medical at work in order to continue to keep my job. I've spent more breaks than I care to admit locked away in the privacy of a stall in the men's room praying to get it together before being paged back to work.

Doctors know little about what causes cluster headaches because there's been so little money directed toward the study of them. Pharmaceutical companies are reluctant to expend resources developing drugs to treat them because of how few people would benefit. Without enough people to make it worth their while and provide a recovery of their investment I understand why there's very little research being done about them.

Tammy was reading online about the benefits of psychedelic drugs such as psilocybin mushrooms and LSD in stopping cluster headache attacks. I'm desperate for relief as I write this and would no doubt entertain that avenue for help but I'll need to wait until I'm retired. I've already pushed enough on the boundaries of what's permissible.

The prednisone leaves me feeling edgy and anxious but it's also a godsend. I would just really like to get through this next few weeks and come out the other side headache free and then go from there.

The lure of retirement has never been stronger for me.

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