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
dave93091 Pageside
Posted
Hi Chris
?I have experienced all the same sypmtoms. Mine started after several years of chronic fatigue, then the brain symptoms started, i entered the world of derealization, anxiety disorder. The brain fog continued.
There is a link to several things, whats been slowly helping me is , Lamictin 25mg,
?cutting out sugar, dairy.
?Hope this helps, its debilitating and no drs seem to know the answers
Pageside dave93091
Posted
Hey Dave,
I actually used Lamictin at one point but it completely zonked me and it felt as if I was a rock sitting idly in the middle of a forest. Just complete apathy and numbness (which can occur as a side effect for some patients). Are you still on it? Has it helped even more?
Senihleahcim Pageside
Posted
I don't know if you've found a solution, however I have had similar symptoms from long term low concentration carbon monoxide poisoning. I feel like an idiot. Carbon monoxide detectors only sound at super high levels so you could have a problem that doctors can't diagnose because of how quickly it metabolizes out of the system, but symptoms just get worse from what I've found.
Senihleahcim
Posted
Pageside Senihleahcim
Posted
Hey there,
I've lived in four different places across the U.S. since the inception of these neuro episodes, and to be honest, they've largely stayed the same. Therefore, I feel like CO2 poisoning can be ruled out unless, coincidentally, all four places I've lived i n have had hi CO2 levels.
bostonma1977 Pageside
Posted
Hey there,
I've been dealing with very similar symptoms for a very long time. It comes and goes and I can mostly deal with it, but for whatever reason it has been far worse for the last few months. I went to an ENT because one of the sympoms I have in addition to the foggy/disoriented feeling is a feeling of pressure in my ears.
Have you ever looked into Meniere's disease? My ENT seems to be pointing in that direction, and he gave me a scopalmene patch (motion sickness patch). I currently think the patch actually reduced symptoms somewhat... not all day, and not completely. But I think it helped. Curious if anybody else has had similar experiences.
Pageside bostonma1977
Posted
You know, I haven't looked into Meniere's and am open to everything. However, my major symptoms are much more cognitive than they are physical or having to do with dizziness & balance. Will definitely look into it, though. How are you doing now? Any progress?
mar90760 Pageside
Posted
Pageside mar90760
Posted
Hey there,
So sorry for the delayed reply - I owe it to everyone following and commenting on this thread to respond in a timely manner but I've tried to put this whole thing behind me, but I still suffer from these neuro episodes almost daily. I haven't made much progress except for the awareness of their frequency: less of them during the summer. Not sure if this can be tied to the weather, happiness, travel etc., but I'm confident saying that during the summer I experience these episodes less.
How are you ? Any progress?
christine36683 Pageside
Posted
This may blow ur mind, I get what ur saying. If u were you i would ask for several lymes tests. Considering 1st could be a false negative.
Lymes disease is debilitating and cruel disease. The symptoms are crazy. You should read about it and seriously consider u have it. It's put people in mental wards. Emergency rooms, pain drs, neurologists, rheumatologists, etc........
They at least could go from there.
I also suffer from late stage lymes, crohns, gallbladder disease, pelvic congestion syndrome, and more. I hope this helped. Christine
ana85762 christine36683
Posted
HH5131 Pageside
Posted
Shaun, thank you for starting this conversation and thanks for this update. I was amazed to see this and couldn't tear myself away from all responses especially yours. I experience most of these things and have been doing so for many years and it has gotten a little worse as I age, just turned 50. I can remember many years ago when I first experienced something like this when I was a teenager. I refer to it as a floaty sensation, then when I experienced it I thought wtf was that, that's a weird feeling. I can even remember when I was a kid and riding the bus home and a girlfriend was snacking on carrots and offered one to me. Strangely, I had never eaten raw carrots and she said they were good for you. So I ate one and had a weird sensation almost like an outer body experience/floaty like feeling. It is something I cannot even explain. I can also remember one time as a teenager a couple friends and I smoked pot (I've never been into that and still am not) and it gave me that same feeling but sooo magnified it scared me. It was like I was in a dream and I voiced that to my friends, and that I needed to get rid of the feeling. My friend even took me aside and said she felt the same thing but she didn't freak about it out loud like I did.
It's a challenge for face to face conversations for me. We'll be sitting there having a conversation and bam out of nowhere this sensation takes over and I just want to get out of the situation. This doesn't happen when I'm working very often only sometimes. I don't like to drive with someone in the car with me especially if they talk too much. I have enough bothering me while driving like the sun and trying to focus on things let alone someone in the car that won't shut up.
I feel so disconnected a lot and just want to feel normal and be normal. It's like stimulation is too much for me and I have to re-boot so to speak. There's so much more but it's hard for me to put in words and just like being in a doctors office, it's hard to think of it all and describe it but you do a fantastic job of it. When I am able to express more, I'll add to this. I hope to get answers to this and I'll start to seek help of dr. I have no idea what kind of dr to start with orbhow to explain it to them. See, it's another face to face meeting which is part of the problem to begin with. I'll probably float away or have a dream sensation and have to leave.
erin5880 HH5131
Posted
I just recently turned 40 and my first born graduated HS this past June and left for college the end of August. For several months I worried and cried over this huge impending change. a few weeks after he left i felt a little light headed and thought I must becoming down with something, flu possibly. That is when all this started....3 months ago. I feel myself just wanting to lay on the couch (luckily im a stay at home mom and have that luxury sometimes). I dread interacting socially and going out to social functions. I used to love that, so this is a major change for me. I began Googling my symptoms and found that possibly i was depressed. I loathe going to doctors but finally did and told him all my symptoms and he said depression can be triggered by stress. He put me on a depression med that made me feel worse....very dizzy and foggy and after one day i quit. he put me on another and i tried it for three weeks but wasnt really feeling much better. I did have my thyroid checked and all was good there. I have often thought about getting tested for Lyme disease (I live in Ohio) but have heard its quite a process and i really hate going to the doctor so i have held off on that.
I am super encouraged to know that I am not alone in feeling these symptoms.
Pageside HH5131
Posted
Hey there,
We have wildly similar symptoms and scenarios that it blows my mind. Interpersonal, face to face conversations with other people still wreck me in the sense that I almost "float away" as I'm talking to someone. What happens a lot of the time is that the background does not agree with the foreground (or person in this case) and it's like my brain can't process what's directly in front of it. This then spirals into a weird brain fog, derealization sensation and it's not uncommon to also experience a pinpoint pain in the back right corner of my head (pain is normally always in the same place). I'm still stuck between a rock and a hard place, but I have noticed that the frequency of my episodes are less during the summer than other seasons. Whether it's my happiness, the weather, traveling I don't know. I actually haven't seen a doctor about this in over 1.5yrs because doctors visits & tests were eating up so much money with zero results. I haven't really given up, but just took a break. Strongly considering inpatient care now to try and troubleshoot this thing continuously for 1-2 months.
How are your symptoms and experiences now? Any progress?
olivier_75193 Pageside
Posted