Debilitating, intermittent "episodes" of disorientation & brain fog
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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.
Triggers:
-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
Symptoms:
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.
I have had an EEG and and a brain MRI - both normal.
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.
5 likes, 151 replies
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Posted
Hey all,
Almost six years later and here we are. I will be 29 in late November (I first posted at the age of 24), and I still experience these life-limiting 'episodes' regularly. I've changed jobs twice since 24, lived in three different US cities (east + west coast), have seen a plethora of doctors (including neurological specialists), and I still haven't made much progress. I'd say the most recent development is that I've noticed the frequency of the episodes is less during the summer compared to other seasons. Be it the weather, my overall summer happiness (who isn't happier in the summertime?!), traveling and/or other factors, at least realizing this new puzzle piece of seasonal frequency is more ammo for me/us.
I still cope with the awful symptoms these episodes elicit. I now work in music festival & event production so hours can be long (sometimes upwards of 18hrs/day) and lack of sleep can certainly help trigger an episode more easily. There are times where I'll step away from the festival or lock myself in a bathroom. shut the lights off, lay down on the floor, plug my ears, and try and hit the imaginary "reset button" so as to calm my brain and symptoms down. Brain fog, dyslexia, depression, apathy, inability to register what someone is saying to me or what I am reading, and oftentimes a pinpoint pain at the back right corner of my head are (STILL) symptoms of my episodes.
I am more reserved now than ever before (and I was the hyper, energetic, happy-go-lucky guy my entire life) because a lot of activities and regular, everyday people things my friends do trigger these episodes. For example...I'm in a great mood, got solid sleep the night before, and let's also say it's summer time and I'm sitting on a damn couch with my closest friends around me, watching TV, chatting, and BOOM an episode out of nowhere. It must be neurological and I'm convinced of that, even though most docs disagree. I do, however, agree that anxiety & stress, and depression definitely fuel the fire and play a part, but I truly do not think they are the sole cause of these episodes.
Let's keep the conversation going. Love how everyone is posting rare conditions that sound alien to us (Kleine-Levin Syndrome, for example, which actually has given people some hope since the symptoms for KLS are similar to a lot of ours we're experiencing. This is one of many conditions that has been listed in this thread). Happy to chat individually with any of you. I don't want to live with this frustrating, life-limiting condition forever. I want to live my life normally and do things humans should be able to do without pain and suffering. Let's work together here.
Shaun
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Edited
Hey man you still alive?
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Posted
sure am
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Posted
Did you find out anything about this at all? Did you find what it was after all this time.
jl47469 Pageside
Edited
Brain fog can be caused by anything which alters the synaptic genome, Diabetes, stress, and so forth should be picked up in a routine chem panel.A whole-genome sequencing and analysis is good at detecting previously undiagnosed illnesses.
jl47469 Pageside
Edited
Genomics is often used to diagnose hitherto undiagnosed diseases and rare diseases, now primarily in pediatrics but is used for adults as well.Whole-genome sequencing and analysis is what we are talking about here. Rather than going into a detailed discussion here, you can find most of it on wikipedia and feel free to ask me any questions.Dont forget to overlook the common causes such as diabetes and certain psychiatric conditions.