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The first episode I ever experienced was in high school during tennis practice. It went something like this: I was playing a "challenge match," where the winner either holds on to their ranking on the team or takes the place of the loser. I was ranked around 7th on the team, and only the top 6 players really play during matches, so my challenge matches were particularly stressful; my ability to play for the team was on the line.
Anyway, the symptoms basically caused me to experience a significant loss in hand-eye coordination. I felt spacey & even had trouble walking at points. Around a half hour in, I would typically take a strategic bathroom break to calm down and then would usually recover. I often had matches where I'd go down 0-5 then after recovering would win 8-6 or something (it was first to 8 games, win by two). Ultimately, the episodes were so uncomfortable that I decided not to play tennis senior year.
The episodes seem to have both psychological and neurological components. I thought for a long time I was merely suffering from panic attacks, but the severe ataxia accompanying the episodes have made me rethink that diagnosis. I don't get the typical symptoms of a panic attack, either--no sense of doom, thoughts aren't really racing, heart doesn't pound, no sweating, etc. Instead, I just feel locked in my head & lose my ability to walk, talk, etc. It's really scary. After resting for about 5-10 minutes, I usually regain control of my movements to some degree. Xanax is very helpful as well; it will pretty much abort the attack and allow me to get on with my day.
Some more information:
-Triggers: I often get these attacks when walking somewhere with other people or during athletic competition (like tennis). I've gotten the attacks even from just playing ping pong--I lose my coordination and things just get worse until I sit and rest a while (or take Xanax). Stairs are also an issue and generally exacerbate my symptoms. Walking up stairs in the throes of an attack is basically impossible, and I've been forced to sit on a stair awkwardly until I feel better a number of times. When I do try to move, I either can't do it at all or make somewhat jerky movements that are very inexact. Pulling my phone out of my pocket, for example, might cause my hand to sort of wildly move in the general direction of my pocket. Encountering people or having to talk to someone will reliably worsen and prolong the attack. Thus, it seems to be psychological in nature, often occurring when under stress (though more recently, it's been liable to strike even without much stress involved). Another trigger tends to be stimulants; if I'm on caffeine or Adderall, my chances of an attack are heightened. In fact, most of my attacks have been accompanied by a stimulant of some sort.
-Steps taken so far: I got a pysch evaluation & started CBT. The CBT didn't seem to help, as it was geared toward sufferers of anxiety/panic attacks, and my symptoms don't appear to match those very well. That said, there does seem to be a clear psychological component (with a "snowballing effect"--once I start feeling an episode coming on, my thoughts will often worsen/heighten the attack, and it feels unstoppable). My psychiatrist agreed that the attacks sound neurological in nature, so she recommended I see a neurologist. About a month ago, I saw two neurologists. Only one of them really took what I was saying at face value. We talked about potential causes. I suffer from migraines with aura, so it could be related to those (although they have yet to co-occur). Episodic ataxia also seems to be a candidate, but neither of my parents have it (it's an autosomal dominant disease), so I'm not sure how likely it is. We also talked about cataplexy (associated with narcolepsy), but again, the symptoms didn't match particularly well. A "last resort" diagnosis could be conversion disorder, in which psychological issues cause neurological symptoms--but that seems to be a catch-all diagnosis without much room for treatment. He signed me up for an MRI, and I got the scan. I ended up having a very small spot of hyperintensity in my frontal lobe, so I'm going to get another (with contrast) on Monday. These spots are fairly common among migraine sufferers (especially those with aura), however, so I'm not too concerned.
-Details about me: I'm a 21-year-old white male currently attending college in Boston. I'm 6' tall and weigh about 140 pounds. I don't have great nutrition, but I'm working on it.
Please, if you have any ideas related to what these attacks might be caused by, share them. I'm confused and worried because there don't seem to be all that many comparable cases online. I feel like my brain is sabotaging my body, and I've become more reclusive and avoidant as a result. It's taking a major toll on my happiness and ability to make the most of my college years.
Thanks for reading. Let me know if you have any thoughts!
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