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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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  • Boots3969
    Boots3969 Pageside

    Edited

    Hi Pageside,

    ​Thank you for starting this discussion; reading what others are experiencing (although I do not wish this on anyone) may help figure all of this out.

    ​I too have been having similar symptoms as described by many here.  I was a healthy marathon runner but started having symptoms in May of 2014.  All came to a head in July when I went unconcious in a crowded restaurant.  After discharge from the hospital, I started having severe brain fog, trouble walking, shaking, painfully cold, fainting and complete disorientation.  My drivers' license even needed to be suspended (per state law).  The bad news I still don't have a diagnosis either but I did find a potential trigger; food!  Through a weird series of events, I found that a diet high in potassium was causing my episodes.  If you haven't tried it already, alter you diet, keep a detailed food log and see how it goes.  I still have other issues and managing the new diet is challenging.  Work with a good Registered Dietician. 

    ​I still see a Neurologist who is considering Hypokalmemic Periodic Paralysis.  Too soon to tell if he's on the right track or not. 

    ​The ongoing struggles are now extreme weight loss, nausea, constipation, etc.  But, I'll take these while continuing to find the root cause in the meantime.

    ​Hang in there everyone and don't forget to really advocate for your care.  It shouldn't have to be like that but unfortunately, that's been my experience as well.

    I'll touch base again if I find out anything enlightening that could help.

    • Pageside
      Pageside Boots3969

      Posted

      Hi Boots,

      Sorry for the delayed reply - I've been on a Patient.info vacay to try and forget all of this, but I'm still coping almost daily with these brutal problems. 

      Re: the increased potassium you mentioned, it's funny because I work for a coconut water company and I drink the stuff almost daily (coconut water is loaded with potassium). However, I started experiencing these issues years before I started drinking coconut water.

      I was bouncing ideas off of another patient on this forum in the past and we actually thought at one point that our potassium levels were too low. So, she got a blood test and everything was normal...not to say that this has any affect on me, but potassium has been considered. I've noticed that dairy slows me down but not sure how it directly affects these episodes, if any. Any update on how the neuro appts have been going?

  • Narcis
    Narcis Pageside

    Edited

    Found this post and website while discussing this very thing with my wife who suffers from Chiari Malformation.  We call them drunk spells as she will usually be talking to me or her dad....anybody really....and then suddenly start slurring her words and begin to just sort of go into slow motion.  Eyes barely open with a sleepy and disoriented look on her face.  She then normally just falls asleep.  She used to have no idea it was happening but has started to notice it as it's coming on.  She's worried she has narcolepsy but I think it's a form of migraine caused by the Chiari (it seems to leave a lasting scar or kink in the spinal chord which continues to trouble the patient...this is just a theory we have as docs have no clue) and possibly thyroid issues which run in her family for which we are currently having her tested. 

    You should make sure the neuro checked for Chiari as it can be hardly detectable at times but still very much a problem.  My wife is 100% disabled as a result of her Arnold Chiari Malformation even 2 years following 2 decompression surgeries which supposedly "corrected" the problem according to her neuro.  

    She has had a non-stop headache for a year and gets regular massive migraines with obviously extreme pain, nausea and vomiting, partial or complete vision loss, hyper sensitivity to touch, smell, taste, light, and sound....the whole mess.  

     

    • diana76034
      diana76034 Narcis

      Posted

      The feeling that comes over me is almost like a high feeling. At first, I was terrified by it but after a few episodes, I kinda got use to it. I haven't been to the doctors yet to get it checked out for fear that it may be something serious. It's strange how it suddenly comes on. It's hard to explain what's happening. Most of the episodes come on mainly when I'm exhausted. I know what's going on around me but I'm disoriented and can't really form a full sentence. Does this happen to anyone else this way?
    • g43765
      g43765 diana76034

      Posted

      Get a cortisol panel done and ask to be tested for a gene mutation, mthfr. A simple search on google with give you some info.
    • traci70474
      traci70474 diana76034

      Edited

      Please look into Kleine Levine syndrome. (KLS). Doctors think of as extremely rare yet I have to wonder how many actually have it and just haven't been diagnosed.

      My daughter was officially diagnosed 2 years ago...but only after a million tests and multiple doctors that looked at us as if we were from another planet. We just got lucky to stumble across a neurologist who was familiar.

      Hope this helps!

    • diana76034
      diana76034 traci70474

      Posted

      Thank you very much and if I may ask, how are they treated your daughter's episodes?
    • traci70474
      traci70474 diana76034

      Posted

      There is no cure for KLS but you do eventually outgrow the illness. No medication, doctors, etc. Once in episode you have to just wait it out.(the frustrating part). Stress and infection/antibiotics are triggers.

      After doing a little research let me know what you think. If you feel it is describing your situation let me know and I can share so much more.

      The positive- it does no permanent damage and patients outgrow...

      Good luck-stay strong!

    • Pageside
      Pageside brenda222

      Posted

      I love scanning over all of these super farfetched sounding illnesses/diseases, looking them up, then finding eerily similar symptoms that align with my own. I DO have one drooping eyelid, I DO have altered speaking, and I (now) DO have limited facial expressions, probably due to the depression having to deal with this for 8+ years. Thanks for the insight here, Brenda,
    • Pageside
      Pageside Narcis

      Posted

      Very sorry to hear about this, Narcis. How is she now?
  • mercedes76982
    mercedes76982 Pageside

    Posted

    I can understand all the thing that you are feeling, the only thing I cannot scape like you, I have a 3 years old.

    Mercedes

  • g43765
    g43765 Pageside

    Posted

    Has anyone here been tested for mthfr? Ive been having horrible undiagnosed problems and recently after social media connect me and another similar symptom experiencing person, i found out my body doesnt methylate. Look it up. Might be helpful. I cant have folic acid. Its a gene mutation. I am disoriented and foggy. I have days where i cant look at light but no head aches.
    • Pageside
      Pageside g43765

      Posted

      Hi there,

      Thanks for the insight - greatly appreciated. It doesn't seem like "methylate" is a diagnosis. Do you mind expanding on this? Super interested.

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