Industrial Medicine isn't Helping

From my cluster headaches to the systems underneath the chronic illness epidemic.

For decades I've lived with one of the most painful conditions known to medical science. Cluster headaches. During a headache attack, blood vessels in the brain dilate, crushing the trigeminal nerve. The autonomic nervous system goes haywire. A 2020 study shows how this compares to other conditions:

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).

I used to get cluster headaches almost daily, experiencing a thousand attacks or more every year. Lately I've been getting them for a few months every couple of years. The headache cluster I'm in now is very intense. It's incomprehensibly painful and otherwise exhausting.

Industrial medicine doesn't know what causes my condition. Doctors don't know how to effectively treat it either, so they experiment on patients with unpredictable results. Seizure meds. Psych meds. Steroids. Insane surgeries with low success rates. They'll try anything as long as they keep getting paid.

In my situation, high flow medical oxygen can reduce the intensity of an attack, but this can be tricky to obtain. To get 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.

A Step Back

Taking a step back, I'm a working person in my prime. I eat healthy and live an active life. And yet I live with cluster headaches as well as another chronic illness. This isn't at all unusual. More than half of all Americans live with a chronic health condition and over a quarter of us live with two or more. From a recent piece by Amber Yang of WantToKnow.info:

One in four U.S. primary care doctors believe their practices aren't well prepared to help patients with multiple chronic conditions. Yet chronic diseases now account for seven out of every 10 deaths in the US.

In my situation, dietary and environmental headache triggers are everywhere. Endocrine disruptors are particularly risky for me and they're all over the place, from the pesticides added to conventional foods to the phthalates emitting from new vinyl flooring to the scents people apply to their bodies. The thing is, these poisons aren't just risky for me, they're dangerous to human health in general.

So most of our physical society is toxic and there is a chronic disease epidemic. At the same time, Surgeon General Vivek Murthy recently called loneliness and isolation "an underappreciated public health crisis" that can increase the risk of premature death by more than 60%. And about 80% of the population will be hospitalized or prescribed medication for a mental health condition at some point in their lives, with most people ending up worse off after treatment.

Unaccountable Doctors

Our society doesn't raise its members to care for one another. We are instead programmed to leave that task to the professionals. These professionals don't regard us as human beings. To them we're merely components in the value extraction machine that is for profit healthcare. This machine has for a long time consumed larger and larger swaths of the economy, making us increasingly dependent on it even as we become less and less healthy.

My doctors treat me like a component in their value extraction machines as a matter of course, but I doubt this is how they consciously see me. Most of the time I get the impression that they see me as a broken robot who just needs to follow their orders to get better. This treatment is funny because at least half of their orders are nonsense. The doctors are just as confident in their harmful orders as they are in their helpful ones.

I've never once heard a doctor admit wrong, even when presented with clear evidence of their folly. Recently I had a doctor argue with me about the drug olanzapine being a benzo. She said olanzapine wasn't a benzo because it was a pine not a pam. When I got home I looked it up and sure enough, it's a benzo. When I sent the doctor a note about it, she doubled down on her irrelevant distinction.

Although it was very tacky, this disagreement wasn't that unusual. Doctors get it wrong all the time. Consciously or otherwise, they lie constantly. Normally, I don't let this bother me. But this particular doctor was using a lie in an effort to distract me from another lie, which was that long term use of olanzapine carried no risk to brain health. Her argument demonstrated that my quality of life was unimportant to her objective, which was to get me to keep taking an unnecessary drug that I've been tapering off of for years.

This is one of the better doctors I've dealt with. Years ago when I was destitute, a neurologist caused me to lose my food assistance after I refused to take a steroid with grave and unacceptable risks. As a result of her actions I literally starved for months while experiencing incapacitating daily headache attacks. Doctors like her do incomprehensible harm to countless people all the time and tell themselves they're doing good. Think about how monstrous that is.

Our Systems are the Cause

When I was first figuring out my headache disorder, I quickly reached the limits of what industrial medicine could do for me. Working with a nutritionist and other alt health practitioners got me further. I learned that I was getting both migraines and cluster headaches, and that the migraines were preventable. Eventually I went from daily attacks to a few bad months every couple of years.

Had I stuck with industrial medicine and conventional food, my headaches would still be completely unmanageable. But today they're manageable. Indescribably horrible, but manageable. And that never would've happened if I'd mistaken the official story for the whole story.

When it comes to food and medicine, the official story is a lie driving a chronic disease epidemic the likes of which our species has never seen. Our systems are not the solution to this epidemic. They are its cause.

Cluster headaches are a terrible curse. But they've also shown me how utterly selfless and supportive many people turn out to be when given a chance. This, more than anything, gives me hope, because things can always get better as long as we keep showing up for each other.

If you want to feel very uncomfortable, watch an hour long documentary about cluster headaches that I made on my phone in 2014. For more of my writing, check out my scifi novels and my Hive blog.