Ok, so…By early 2024 I was 100% confident that my lasting
symptoms were being driven by metabolic impairment of the brain. But knowing
this and being able to do a lot about it are two different things. In the
spring, I was offered an opportunity to change offices at work, from one of
extreme tension and hostility to one that was far superior on both professional
and interpersonal levels. And while this role was “better” by basically any
metric you’d use to typically judge a job, it was also a bit more cognitively
intensive.
To be clear…I was suffering on a daily basis in my previous
role as well, but in a way that was often a touch more manageable. I could
usually girt my teeth and continue to function in my day-to-day life,
judiciously using leave (both personal leave and leave without pay) to manage
the worst bits and sometimes string together stretches of days in which I felt
nearly normal. This is how, for example, I was able to win a small trail race
last fall after being away from work for almost 4 weeks in a 6 week stretch.
The new role, revolving around airspace and routing
automation, wasn’t an extreme increase in workload in theory. But I also no
longer had a boss fighting tooth and nail to shield me from fulfilling my job
duties, as I had previously. I did a bit more work now - but having largely
existed on a knife’s edge for so long anyway, this incremental increase in
cognitive effort took a fairly extreme toll.
The most ironic part of all of this continues to be the fact
that I can, at least when I feel well enough, continue to exercise at a high
level without issue (and in fact, as I’ll discuss in part 3, its as important
as anything in managing my condition). My brain doesn’t work but my body still
does. To that end, despite barely running all spring, I was able to complete a
50 mile run in June of this year. I had been in Oklahoma City for 2.5 weeks for
a very, very relaxed training course related to my new role and had just enough
good health to exercise during most of my time there.
Nothing to do on the weekend was a good enough reason to
drive to NW Arkansas for a 50 mile “backyard” style race. It followed the
typical format of a backyard ultra – 4.1666 miles every hour on the hour – but
instead of an endless race of attrition, it simply ended with a time raced on
lap 12. So all told, a very easy way to get a 50 miler done in a bit over 11.5
hours. True to standard, I felt quite rough race morning and during the early
laps, but improved considerably throughout and had an enjoyable experience
overall.
That race was the end of the highlight reel though. Work has
been too hard, and I’m not entirely sure my health hasn’t actually been slowly
deteriorating as a result of the constant inflammatory stress that results from
forcing my brain to do things it really can’t. The coping mechanisms over the
summer were less than stellar – binge eating and alcohol (again, for reasons
I’ll explain) both moderate symptoms enough to maintain some semblance of
function. Not any kind of health, mind you, but enough function to work 25-30
hours a week while keeping the neurological complications on the right side of
bedridden. Unsurprisingly, I gained about 10 pounds in 10 weeks employing this
reactive strategy of brain energy management.
Meanwhile, I’d been fighting all year to find a doctor
wiling to order the test (a PET scan of my brain) that I knew would prove the
significant metabolic deficits driving my condition. I don’t really remember
how many doctors I asked and how many times I was told no, even by doctors who
seemed to agree right up until it was time to order the test. Finally, a
neurologist at Johns Hopkins (one of I think 13 neurologists I’ve now seen)
agreed to order the PET scan. Not that he necessarily wanted to - He was really
just placating me and told me straight up that I was probably wrong about what
the test results would show.
Well…as you can probably guess, I was not wrong. The PET
scan confirmed impaired brain metabolism in the temporal, parietal, and frontal
lobes, as well as parts of the limbic system, including the hippocampus. In
short, a lot of my brain wasn’t working properly to produce energy. Unfortunately
though, being right about the problem doesn’t do much to solve the problem. I
could certainly be confident in my approach at least, which would now be a fair
bit more diligent than briefly plugging holes with alcohol or excessive carb
intake.
I finally this fall made the decision to commit long term to
a strictly therapeutic ketogenic diet. I had been hesitant to make that change
since successfully reintroducing fruit, but it seemed like an obvious best
option moving forward. I’ll discuss more in the next section, but ketones are
an alternatives source of brain fuel that can somewhat mitigate the negative
effects of metabolic impairment without the obvious consequences of alcohol or
binging on dried mango. My diet now consists of less animal protein, but more
added fats such as tallow, butter, and heavy cream. I also consume a few
servings of MCT oil daily as a source of additional fat, all as part of an
effort to not only minimize carbs (like on a standard low-carb/keto diet) but
to maximize fat ratio in an effort to drive ketones as high as practical.
The only other “intervention” so to speak remains the same
as always – exercise as much as possible. Exercise increases metabolic activity
in the brain. The more I exercise, and the longer each session is, the better I
tend to feel. Days in which I fail to exercise before work are almost uniformly
worse than when I do, and carry with them a high risk of failing to make it
through the day. It certainly took a few weeks for the exercise to begin
normalizing – while I had previously spent long stretches of time eating zero
carbs on a pure carnivore diet, it was when my health was generally too poor to
exercise anyway. A commitment to an approximately zero carb diet in the context
of training and exercise was largely unchartered territory.
Where am I now? Ketosis is roughly as effective as binge
eating and alcohol at mitigating extreme symptom presentation. The big
difference is that its much healthier overall, and indeed I’ve now reversed
most of the weight I gained gorging over the summer. Unfortunately, being
roughly as effective still means I’m not well enough to get through the work
week. I do manage to exercise most days, especially if I run in the mornings
early in the week, although it often falls apart in concert with my struggles
at work. I still spend quite a bit of time in pain, with sleep problems,
numbness, and dizziness permeating most of my days. I do think the ketosis
blunts this to a degree, of course, and so “catastrophic” episodes that leave
me briefly bedridden and unable to run for a week at a time are less frequent than
they otherwise may be.
I’m continuing to try to combine deep ketosis with frequent
exercise to the best of my ability, while limiting cognitive strain where I’m
able (It’s taken a very long time to write this for largely that reason).
Beyond that, though, there’s very little to be done. There is no medical
treatment for impaired brain metabolism (part of the reason some doctors
wouldn’t order the test) and no particular reason to be confident this will
ever get better after all this time. In fact, impaired brain metabolism is a hallmark
characteristic of Alzheimer’s, Parkinson’s, and other neurodegenerative
diseases. In a more “normal” patient, such findings would generally be expected
to continue degrading over time and would likely foretell progressive
impairment and damage to the brain and nervous system.
In part 3, I’ll explain why I don’t think that worrying
forecast necessarily applies to me and discuss brain metabolism more broadly in
the context of my condition.
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