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Debilitating, intermittent "episodes" of disorientation & brain fog

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Pageside
Pageside

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

151 Replies

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  • traci70474
    traci70474 Pageside

    Posted

    Please look into Kleine Levine Syndrome. My daughter was diagnosed 2 years ago.
    • Pageside
      Pageside traci70474

      Posted

      Thanks, Traci. You're among others who have mentioned this in previous comments - I'll definitely look into it as I'm still dealing with this nasty episodes almost daily sad 

  • todd19891
    todd19891 Pageside

    Edited

    Hello,

     I happened upon this thread randomly. Pageside, if you are still experiencing these symptoms please let me know as i have a lot to say about a chronic condition that i have . Some of the symptoms you mentioned are part of my issue. I may be able to help in some way.

    • edgarcb
      edgarcb todd19891

      Edited

      I do, it can happen to me 5 to 7 times in a month, then it can go away 1, 2 or 3 months and then it comes back again at me, it may vary on the intensity and the lenght, but is always kinds the same.
    • Pageside
      Pageside todd19891

      Posted

      Todd, 

      Would love to chat with you one-on-one. Will shoot you a note directly. Appreciate your post!

       

  • Jantina
    Jantina Pageside

    Edited

    I will add my voice to those who can sympathize with these baffling symptoms.

    I get episodes where I become really sleepy / disoriented / brain fog / disconnected and then I have to go lay down and sleep for anywhere from 2-8 hours. I say sleep, but it's not really sleeping. I wake up tired and disoriented and it takes me quite a while to feel myself again. That night I will need to go to bed early because I am so tired from the episode. Sometimes I'm totally unconscious, but sometimes I'm partially conscious but, like some people have suggested, disconnected or stuck inside my head and not really aware of what's going on around me. If I try to stay up, I will be slowed down, not make sense when I'm talking, and won't remember what I said. My husband says it's like I'm drunk. 

    For me, these come generally at very predictable times, namely weekends and holidays. Sundays are the worst.

    I started having these about 5 years ago, and they went on for about 2 years, and then they just went away. Then about 1.5 years ago they came back. I have kept a diary and I can find no connection between diet, exercise, stress, weather, horomones etc.

    I also have a variety of other random neurological issues that are not directly related to the brain fog / sleeping episodes. I faint fairly often. maybe once a month or so (I always thought this was normal, but apparently it's not). I get brain "zaps" and random sudden sharp pains at random spots on my body. I sometimes get full body twitches. These symptoms are much worse during the times when I also get the episodes, and fade away as the episodes go a way as well. 

    Many doctors and tests, and apparently I am remarkably healthy. Lucky me! My last neurologist just gave up on me and told me he couldn't even think of any more tests to run that haven't already been run. I have no hope that this will ever get diagnosed. Maybe the most reasonable explanation is that I am stressed, or depressed, or anxious, or just plain crazy. 

    Anyways, it's good to hear from people who have something at least somewhat similar.

     

    • Pageside
      Pageside Jantina

      Posted

      Hi Jantina,

      So sorry to hear that you're experiencing these symptons, but glad that your health otherwise is looking bright. When you were experiencing these "episodes" on holidays, weekends, Sundays, was there a certain trigger during those times? Foods? Exercise? Sleep changes? I think finding our triggers is a crucial step towards figuring out what it is we're experiencing

  • marcyu72
    marcyu72 Pageside

    Posted

    Hey there, have you had any luck figuring all of this out? I have all the same symptoms and it's baffling. I also have neuroendocrine cancer but I feel like this neurological stuff is somehow related to not getting enough oxygen although my oxygen level is normal. Please respond if the doctors have made any progress! Thank you and I hope you have found some relief.

    • Pageside
      Pageside marcyu72

      Posted

      Hi Marcy,

      So sorry for the delay - I've been off the grid for the simple reason that this thread arouses the fact that I'm still dealing with these episodes and almost daily. I'm sorry to hear that you have neuroendocrine cancer, and I would assume that your symptoms are directly correlated to that condition, but I'm obviously not certain since I'm not a pro. Have you brought these symptoms up to your doctor[s]?

      I can totally understand when you mention a lack of oxygen. I think that's often the best way of describing the symptoms as a whole because without oxygen is without cognition for the most part...we can't survive without it. I voluntarily find myself taking a couple of deep breaths in through my nose and out through my mouth during these episodes since it feels like my brain is lacking some sort of element. These aren't panic attack deep breaths since I'm not experiencing anxiety, but just trying to force more O2 into my head...if that makes sense. I've even tried ordering oxygen cans on Amazon and using them in the midst of an episode. I've also tried Ginkgo Biloba and Vinpocetine which are supposed to increase blood & oxygen flow to your brain, but to no avail for me. I'm currently trying an array of Nootropics and trying to self treat at this point since I'm a conundrum to every doctor I visit

  • kevind
    kevind Pageside

    Posted

    Your symptoms sound a lot like the simple partial and complex partial seizures I suffer from
    • Pageside
      Pageside kevind

      Posted

      Hi Kevin,

      I've had so many types of EKG's - including a 24-hour ambulatory one - to no avail. All results were negative. Furthermore, I've tried a vast array of seizure and also migraine meds without any success. I've begun to troubleshoot and self treat with nootropics. It will be a long, expensive process singling out what won't work and what will...if anything, but I've had minor success with them at times.

  • mandy62124
    mandy62124 Pageside

    Edited

    Hi I think if you look into FND you may get some support and answers. It is being recognised as a new nureological disorder. Functional Nureological Disorder. Can go to FND HOPE and nureo symptoms. Org
    • Pageside
      Pageside mandy62124

      Edited

      Mandy,

      The FND website writes this:

      Functional Neurological Disorder provides an umbrella term for a variety of symptoms of apparent neurological origin but which current models struggle to explain psychologically or organically. 

      ^I cannot agree with this statement any more. In fact, the best advice or "diagnosis" I received from the 10+ doctors I've seen regarding this issue said something incredibly similar to the above, "I know you think you're crazy for explaining to me these episodes you're experiencing, but I believe you wholeheartedly and I understand that it is a major life obstacle. It's also very possible that several other people are experiencing what you are, but because there are so few and because it's so unique, we don't have a diagnosis, term or even a treatment for it."

  • Moon_Shines
    Moon_Shines Pageside

    Posted

    Pageside, I gave similar bouts of confusion and mind racing. My neurologist said my brain scan was normal but that he suggested I suffered from sleep apnea. When your brain doesn't get enough oxygen during sleep it can begin to cause these problems. I went through a sleep study and now sleep with a CPAP machine that has helped me significantly. If you continue without oxygen going to your brain it can cause neurons not to fire and brain degradation .

    • Pageside
      Pageside Moon_Shines

      Posted

      Hi,

      Thanks for the note, Why did he suggest that you suffered from sleep apnea? Due to the symptoms of confusion & mind racing? Also, before the CPAP, did you wake up regularly throughout the night? 

      My father (now 60 y/o) uses a CPAP and I'm wondering if sleep apnea is genetic. I'll look into this - thank you.

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