Debilitating, intermittent "episodes" of disorientation & brain fog
Posted , 83 users are following.
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
kk1959 Pageside
Posted
Just stumbled across this. Sounds exactly like my dad. He had epilepsy. However, he's deceased now, but he had them from the time he was a child, mote than 60 years. Just a thought. God's blessings to you.
Reney88 Pageside
Posted
Also have some great ideas for what not to do, in the middle of one of these..... out-of-body moments I don't know what to call it it's weird I just don't know what to do you definitely should NOT get online and post a whole bunch of random things in different places though COL oops oh well
Reney88
Posted
(In a nutshell)... like I did!
Wth was i thinking? I really don't know but i wasn't trying to be ugly. That's for sure. Lord knows i got enough crap wrong with me, I'm on borrowed time as it is now. Amazingly, I'd like a little while longer here on earth i just wish the everyday pain and such wasn't so darn unbearable. Smh.
Good day all.
Pageside Reney88
Posted
Totally understand where you're coming from!! Messaging people on social media platforms, posting on forums (like this), e-mailing whilst in the middle of one of these "episodes" is strange because what we're saying isn't our "true self" if you know what I mean. I oftentimes don't even remember what I write on here because I come on here for comfort and solace normally while experiencing an episode.
nicole_14725 Pageside
Edited
Hi my name is Nicole a 35 year old healthy happy female i'm getting the same episode and they started about four months ago the doctors chalk it all up to anxiety and will not hear anything else that I'm saying have you found a solution just curious I see that you posted this a while back ?????hopefully you have a can shed some light on my situation I am desperate for an answer
Jantina nicole_14725
Edited
Unfortunately, no one has any ideas. I've had literally every test any doctor can think to run, and sadly I'm shockingly healthy. My episodes come and go, so i will have them for a year or two, and then they'll go away for a year or two, and then come back. No pattern that I can discern. Basically we've given up on figuring this out.
nicole_14725 Jantina
Posted
It's so hard to deal with it has literally ruined my life idk how to do it
Jantina nicole_14725
Posted
I wish I had answers. I'm so sorry. I know it's miserable.
ra7777 Jantina
Posted
This is exactly what I was experiencing for years until they finally diagnosed me with late stage neurological Lyme Disease. All those years I should have been getting treatment but wasn't diagnosed until other symptoms started manifesting
ana85762 ra7777
Posted
Im suffering so bad 😯did you find anything that helps pls let me know
Pageside Jantina
Posted
NOT given up, taking a break and checking in occasionally 😃
Pageside nicole_14725
Edited
Hey Nicole,
So sorry you're experiencing these weird episodes. Haven't made much progress on my end except for the realization that the frequency of these episodes is less during the summer than other months. Be it the weather, happiness, traveling and/or something else, I don't know, but at least it's another piece to this complex puzzle that no one can figure out. There's some great insight on this entire thread with specific conditions listed that I have looked into and am also going to look into, next one being Kleine-Levin Syndrome. Definitely a lot of cross-over with what I'm experiencing.
How are you doing? Any progress?
Pageside ana85762
Posted
Not yet, but haven't given up. A couple of people have mentioned Kleine-Levin Syndrome on this thread and there is a lot of cross-over in terms of symptoms, but of course there are equally as many symptoms that don't align with what I'm experiencing.
How are you doing? What are your primary symptoms and what "trigger" them?
traci70474 Pageside
Posted
 On the positive if this ends up being Your diagnosis, it is a condition which is typically outgrown in your late 20s .
Good luck to you.Â
Pageside traci70474
Posted
Hey Traci,
Thank you SO much for this!! KLS has a ton of similarities to what I'm experiencing. In fact, it just instilled a rush of hope for me! Will definitely look into it. My only concern is that I'm about to be 29 and there is absolutely no pattern that shows this thing will be going away anytime soon.
How is your daughter doing? Did they prescribe meds for KLS? Any insight and treatments (out of curiosity) on KLS you can provide would be greatly appreciated!