Cluster Headaches are a Nightmare

in #life2 months ago

headacheportrait.jpg

The above image was done in oil pastel on paper.

Cluster headaches are a living nightmare. Mine have been in remission for two years and recently they came back intensely. During a headache attack, blood vessels in the brain dilate, crushing the trigeminal nerve. The autonomic nervous system goes haywire. It's one of the most painful conditions known to medical science. From a 2020 study:

A total of 1604 cluster headache respondents were included in the analysis. Respondents rated cluster headache as significantly (p < 0.001) more intense than every other pain condition examined. Cluster headache attacks were rated as 9.7 ± 0.6 (mean ± standard deviation) on the numerical rating scale, followed by labor pain (7.2 ± 2.0), pancreatitis (7.0 ± 1.5), and nephrolithiasis (6.9 ± 1.9).

Each attack lasts from 45 minutes to 3 hours, with most of mine falling into the 1-2 hour range. During that time is torture. All I can do is try not to scream or thrash around too violently. Eventually, the worst passes, leaving soreness and exhaustion in its wake. Then it happens all over again a few hours later.

The current cluster is the worst one I've had to deal with in a decade. My last two headache cycles, in 2022 and 2020, were more manageable, with just one or two moderate attacks per day. This time around, it started with getting woken up from deep sleep here and there by the headaches, and has progressed to having several hours of back to back attacks every day.

Fortunately, I do have a safe space to deal with this in. Me and a little dog are holed up in an apartment and the dog doesn't mind if I pace and tremble and choke and groan. When the pain gets too intense, I inhale high-flow oxygen. This helps, but I'm trying to ration it.

I have just 80% of one tank left and the stuff goes quick. Once it's gone, getting more medical oxygen can be beyond inconvenient. To obtain the gas I have, I had to do 3 doctor visits and pick up my tanks in a suburb nearly an hour out of the city. The process took months. I'm hoping I can just go back out to the distributor and swap my empties for full gas canisters when the time comes, but I've got a feeling it won't be that simple.

Despite the illness, I'm so far managing to keep up with my work. I have everything I need and a partner supporting me. I know I'm resilient enough to get through it. But wow, cluster headaches are rugged. They reduce your whole existence to animal trauma.

It's impossible for most people to grasp how challenging this condition is. For a long time I felt alienated by their misunderstanding, but these days I sort of just see them as children who are better off not knowing the actual contours of the horror I live with. Most people will never get it, but those closest to me understand it well enough. In truth I wish I could do more to protect them from it.

There's no way to know how much longer this cluster will last. I'm hoping the worst passes within a couple of weeks, but it might go on much longer. There are a million other things I'd like to be doing, but they'll have to wait until I'm not being tortured all the time. For now, I'm totally focused on the present moment, grimly determined to continue meeting my basic obligations even though my brain keeps going haywire.


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During a headache attack, blood vessels in the brain dilate,

Have you ever read Dick Quinn's "Left for dead"?

Well you don't need to read it if you haven't to understand this comment.

Basically, eating large amounts of chili will bring back the blood vessels to it's normal size and strengthen the walls, preventing the higher pressure. And that is what Quinn did to combat his heart disease and eventually make a beyond a full recovery from previous heart attacks and surgeries he had.

Maybe that can help you too during your cluster attacks?

I'm no medical expert though. So, Do dyor on it.

Cheers mate. Stay strong! Rooting for you.

Hey thanks for the tip! In cluster headaches, blood pressure can vary dramatically, sometimes too high, sometimes too low. Chili peppers sometimes help and sometimes make it worse.

Gotcha. Quite a doozy you got there. Does cannabis help?

Yes. Strong coffee, cannabis, and oxygen all make it slightly more manageable. Psychedelics work for some sufferers but I haven't had great luck with them.

I get migraines sometimes but these cluster headaches you talk about seems to be on a whole different level of pain. I feel for you. Never heard about it till I read your post. Nor do I know anyone to have it or met anyone talk about it.

Cannabis helps me a bunch with the migraines. So does Guanabana tea. I sometimes mix the two for better sleep when it gets bad. I'm not a big coffee guy anymore. I also quit smoking tobacco and as for alcohol I only drink a small shot of Natural Sotol in the winter or when I feel the need to get rid of a cold or flu coming on. Or three good shots for 5 days each day to get rid of any parasites. The cool thing about sotol it gives you no hangover. The thing is, if you drink water after it wears down, it will raise your drunkness again lol

I am so glad to be right by your side as you go through this dark period of pain, healing, and recovery. As long as I'm supporting you, you never need to protect me from what you go through. And count me in to give you a ride to the suburb for more oxygen.

Thank you. Your support means everything.