7001009 tn?1386963933

Debilitating & intermittent episodes of disorientation, headaches and brain fog

I'm going to start off by saying my condition/illness or whatever it may be is a medical mystery to six doctors (physicians, neurologists, psychiatrists) and that I am unemployed and rejecting job offers because my condition limits my abilities and brain function. It is a roadblock in my life and I can't seem to drive around it. I am a healthy and fit 24 y/o male who has been suffering from transient, hard to describe disorientating episodes/spells that I first had the pleasure of experiencing at 18. Since then, the episodes have occurred almost daily but do not last all day long - they are TRIGGERED by certain situations and environments. I can feel the spells gradually, but pretty quickly coming on (they don't occur at the drop of a hat) and I actually have the ability to stop them by laying down in a dark room and literally putting a pillow over my face and just "shutting down" for a couple minutes. Weird, I know. The "spells" last anywhere from 10 minutes to multiple hours, depending on if I get to a dark room with a pillow. I've tried multiple migraine medications and none have even remotely helped.

-Focusing on something for more than a few minutes - even talking to a person! I can't even talk to a freaking family member face-to-face without falling into one of these spells. One minute I'm fine and then there's a total disconnect between what I'm seeing and my cognitive function. Depth perception also throws me off here.
-Similar to focusing...when I'm talking for an extended period of time. It feels like my brain is totally deprived of oxygen and I then fall into one of these disorienting episodes
-Light contrast situations, especially when I'm in a well-lit room when it's dark outside. It's like my brain doesn't "agree" with what i'm seeing and the light situation

In addition to feeling extremely disoriented, the other symptoms include a general feeling of disconnectedness, brain fog, a headache of pinpoint pain in the back right of my head that occurs during most of the episodes, a massive drop in mood and overall emotion (apathy I guess you could say), a minor lack of memory of anything that occurred during one of these episodes (for example if I read 5-10 pages during one of the spells I wouldn't remember specific details of the read but would remember the general theme and whatnot), and extreme cognition trouble (speaking, writing and even focusing on a person and their eyes). One minute I'm thinking and speaking clearly and the next minute one of these episodes can surface and I start to totally jumble my thoughts, words and sentences and I sound like a complete idiot.  At this point in the dizzy spell, I want to just lay in bed and cover a pillow over my face in the dark. When I do that, it's literally like hitting the reset button and the symptoms decrease significantly.

These episodes or spells or whatever they are are affecting my quality of life. I used to be a very happy, energetic and social person and now this issue is somewhat holding me back, though I do go up against it daily in hopes that I can increase my tolerance of the spells, which I can't. Any advice, support or help would be extremely appreciated here.
3 Responses
7001009 tn?1386963933
Should probably mentioned that I've gotten a brain MRI and an EEG - both normal.
Avatar universal
Have they looked into anxiety as a possible root cause? I suffered from sever anxiety for 4 years and most of what you are describing I have suffered through. It is very debilitating an you feel trap within yourself. I still have issues with focusing on some activities like talking looking at someone in the eyes for too long.

Maybe look into this if it hasn`t been done yet. Otherwise, keep going to see different doctors. There is bound to be one that has that knowledge about what is ailing you.
7001009 tn?1386963933
It's actually quite comforting to know that you share and shared some of these symptoms with me. As for anxiety, it has definitely been looked into. I've seen two psychiatrists regarding this issue and as soon as I told them the symptoms & triggers both immediately jumped to the anxiety/depression conclusion and wrote me scripts for ADs right there and then. It seemed like they only cared about writing scripts versus actually trying to figure out what was going on. One neurologist thought it was migraine related (I used to have migraines w/ auras in my teen years), but that diagnosis didn't seem to pan out as I have tried three migraine meds and none worked at all.

I'm actually on Bupropion SR 300mg right now because of my secondary depression due to this condition and also because I have really bad ADHD and bupropion treats ADHD as an off-label condition. Started it a couple of weeks ago and nothing yet except for the amazing first week honeymoon period haha but that ended abruptly. My Pdoc won't budge on his diagnosis that these are ADHD related episodes I am having. I agree with him to some extent but I also never had these spells prior to age 18. I've tried every ADHD med known to man, and although they help with focus, my mood and energy level plummet and I'm not willing to give up happiness for focus. How have you been coping with the symptoms??
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