I've been lurking for a little while and am encouraged by the ability of supplements to help optimize people's health. So this is my first post, in which I hope to invoke your collective knowledge to fix my broken brain. My story is a long one, so I apologize in advance.
I graduated with honors from an Ivy League law school seven years ago, so I suppose you could say I was a pretty functional guy. To celebrate my graduation, I backpacked Asia for a month. My doc gave me mefloquine, a malaria prophylactic, to take while I was abroad. After three doses (taken once weekly), I developed a sudden pressure between my eyes and in the bridge of my nose. That night, I had some weird sleep effects, including sleep paralysis (waking up unable to move), which I have never had before or since. I went to the hospital (this was in Hanoi). They dosed me on benzos for two days, and the neurologist explained that the mefloquine I had been taken was known to cause neuropsychiatric side effects. I obviously stopped taking it, and when I was released from the hospital I was good as new - or so I thought.
Two weeks later, while in south China, the pressure in my forehead and the bridge of my nose returned, very suddenly. It is worth noting that both times the onset of the pressure coincided with a solid dose of caffeine.
I went home immediately, and for the next month I suffered from severe insomnia - mostly the inability to stay asleep; falling asleep was not an issue - and anxiety. Toward the end of the month I started to develop tinnitus and hyperacusis. The tinnitus was subtle at first, but gradually got louder over the following months before leveling off. It is with me to this day, as is the pressure in my forehead. The hyperacusis is mostly gone.
I saw doctors, and almost all testing was normal: MRI, EEG, bloodwork - all normal. The only tests that showed abnormality were functional imaging: a quantitative EEG showed "significant central nervous system electrical dysfunction"; and a PET scan showed areas of hypometabolism in my brain. I was put on Wellbutrin and a tiny dose of Klonopin.
Over the next two years I gradually recovered, with the exception of one episode: when I donated blood my symptoms immediately worsened, and it took several weeks for me to return to baseline. I also was sensitive to caffeine (immediately after consumption) and alcohol (the day after consumption - not during), so I avoided both. Intense exercise also exacerbated my symptoms, but only the day after - I actually felt better during exercise. This aside, after two years I considered myself mostly recovered. I still had the tinnitus and faint pressure, but I can live with those. I went off the Wellbutrin and Klonopin after being on them for about a year.
Then things suddenly got much worse. I developed restless leg syndrome, and the insomnia and anxiety returned even worse than before. I developed tremors in my hands - though only when I moved them - and parasthesias in my thighs and back that feel like ants crawling on my skin. I was in bad shape, to the extent that I was unsure of my ability to continue working. I would note that prior to the onset of my worsened symptoms I was on vacation for a month and spent most of my time sitting around and reading (i.e. not moving). I have since noticed that I tend to feel better while moving around, and worse while laying around.
Around this time, I discovered that sugar made me feel immediately better. And if a little made me feel better, then a LOT would make me feel great, right? So over the subsequent months my sugar consumption went up massively, and I felt worse and worse. My energy and motivation went down the toilet, though whether this was due to my brain issues or the fact that I probably gave myself metabolic syndrome is anybody's guess. I also started getting heart arrhythmias and muscle spasms. My memory and reasoning abilities were/are as sharp as ever, but my motivation is in the crapper.
I saw doctors, of course, though they were little help. Most simply shrugged or said it was an anxiety disorder. Those who ventured further seemed to fall prey to that old saw about how when you're a hammer, everything looks like a nail: a neurologist diagnosed me with a subcortical cognitive disorder; a psychiatrist diagnosed me with central sensitization syndrome and a generalized anxiety disorder. I was put on 1200 mg/day of gabapentin and 60 mg/day of Cymbalta, both of which I am on to this day. They seem to help manage the symptoms somewhat.
Most recently, I have developed myclonic jerks: when I am sitting still, an arm, leg, or even occasionally my abs will suddenly jerk. No biggie in the grand scheme of things, but an additional data point, I suppose. The restless leg syndrome has mostly resolved, though it makes the occasional cameo.
I have corresponded with researchers who have researched mefloquine, and they have offered explanations as to why this is happening, but not how to fix it. One wrote that "[i]n most patients I am familiar with, mefloquine’s long-term effects appear to be mediated by some form of direct injury to the CNS or some long-term change in brain function, similar to what occurs with PTSD." Another researcher has concluded that mefloquine causes damage by disrupting cellular calcium homeostasis, resulting in apoptosis.
Yet my personal experience with my symptoms, which vary in severity by the day and often appear and then resolve for seemingly no reason, suggests to me more of a process than a single traumatic brain injury. One expert on mefloquine has hypothesized that long-term side effects from mefloquine are caused by thyroid or liver issues, though my TSH, T3, and liver enzymes are all in the normal range. But the fact that I feel better after eating, have perennially cold feet (a new-ish development), anxiety, and sleep disturbances would suggest a possible metabolic issue in general and thyroid problem in particular. Conversely, the fact that donating blood kicked my ass so badly suggests that the problem could be circulatory as well. Brain hypometabolism could implicate both issues, I imagine, but I am far from an expert.
Thanks for reading. Any thoughts?
p.s. Avoid mefloquine at all costs. I would have been better off just getting malaria. I'm far from the only one experiencing long-term problems from this poison.
