2024 in Review Part 2 - Running 50 Miles is Easier Than Going to Work

 

Part 1 Here

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. 

Part 3 Here

2024 In Review, Part 1 - A New Paradigm of Brain Dysfunction

Its been a while

In fact its been a good solid year since I’ve written anything here about my health and life journey. Part of that is because things have been fairly dynamic, and part of that is because things have been fairly difficult.

While everything I’ve previously discussed about my health has been through the lens of autoimmune issues, it was already becoming increasingly clear a year or more ago that the situation had been evolving and that an updated paradigm was warranted. While the autoimmune issues were very real – you don’t just test positive for every marker of Lupus without an autoimmune problem – and the likely root cause of my overall condition, my symptoms were becoming increasingly decoupled from acute immune triggers. This had been the case since at least mid-2023, after my second week+ long fast. By this point, I had fasted for a week on two occasions, for 3-5 days on several more, and for 36-48 hours probably dozens of times. I had adhered for long stretches to a pure carnivore diet, and only gently introduced the (theoretically) safest non-carnivore options like organic fruit and honey. To my knowledge, this is the only evidence-based approach to seriously fighting autoimmune disease and, one way or another, I had largely moved past these issues by the end of 2023.

What was also clear, however, is that I wasn’t healthy. In retrospect, I was still struggling to totally move on from the autoimmune paradigm and was sometimes shoehorning symptom triggers into that myopic view when it wasn’t warranted. To make things worse, the realization that the resolution of autoimmune markers and reduction in autoimmune triggers weren’t going to portend a full-scale return to health was fairly demoralizing. That can all be seen by simply looking back one year, at some musings that I’m not overly proud to have written.

What I knew very clearly at the time but was not fully exploring was that I struggled quite a bit at work. And this was despite the fact that my work was, um…..not particularly challenging. Bluntly and briefly, I was under the supervision of a boss who put her greatest efforts into ensuring that as much work as possible was shunted away from our department. It was a boring, uncomfortable work environment, but certainly not a busy one. Still, I did enough work to know that my symptoms were exacerbated and magnified by the effort. Conversely, symptoms diminished whenever I was away, and able to fully rest my cognitive faculties.

The notion that I was suffering from impaired brain metabolism was something in which I became increasingly confident over the winter. While specific foods didn’t trigger acute symptom onset like they used to, I could still manipulate symptoms by, for example, binge eating, which would preclude symptom onset in part or entirely. Exercise helped considerably as well, as I was often barely able to shuffle out the door before eventually finding improved health over the course of multiple hours of walk-jogging at an easy effort. These factors, combined with the obvious acute distress that accompanied mental effort either at work or home, largely cemented my new metabolic paradigm of neurological dysfunction.

However, the final nail in the coffin, so to speak, didn’t come until the first weekend in February. I flew to Las Vegas to spend a long weekend with my family, and frankly I felt like shit. I struggled mightily with pain and numbness on the flight, and the plan my wife and I had to show up early for a day of hiking ended with her leaving me behind to hike on her own. After a full week of work, I wasn’t in sufficient neurological health to function at a normal human level.

But, after a couple days wandering around the strip with alcohol in my hand, that had changed considerably. To be clear, this wasn’t some Hangover-esque degree of debauchery. I just simply sipped alcohol (largely not caring how it might affect my symptoms) for most of a couple consecutive days and felt really quite good. As I progressed from shaking in the trailhead parking lot to feeling as well as I had in months, I finally confirmed with certainty the metabolic damage to my brain and abandoned any remnants of the autoimmune paradigm for good.

The reason I was able to do this is because alcohol is, for all intents and purposes, a brain fuel. The traditional notion is that the brain only uses glucose for energy, but this isn’t really true (much more on this in a later post). The brain can also use, among other substrates, alcohol. So while I had once again wrecked my body all week by straining my brain in an energy-deficient state, I had followed it with a relaxed weekend of frequently available energy flowing from large cans of hard seltzer. While the obvious overall health implications still apply, in this case my brain and nervous system were recovering thanks specifically to an uncommonly available energy flow.

I’ll write specifically amount impaired brain metabolism and its consequences in part 3, but for now its enough to know that I had confidently assessed the major problem I was still dealing with. The arduous duel tasks of demonstrating it and dealing with it will comprise part 2.

Part 2 Here, Part 3 Here