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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

151 Replies

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  • Calvinharris
    Calvinharris Pageside

    Posted

    I have the same thing man

    How you going any answers mine started after digestive issues

  • traci70474
    traci70474 Pageside

    Posted

    Please tell me if anyone has uncovered any answers to these episodes. My 18 year old is experiancing her 3rd spell and it is beyond devasting. I feel so helpless and doctors seem to have no answers and I have no idea where to turn sad(
    • wendolph
      wendolph traci70474

      Posted

      Hello, everyone has slightly different symptoms, its that hard to diagnose even gps and neurologists struggle, they rely on what you experience. Keep a diary, what you've been doing, what you've eaten, what does it feel like exactly, what do other people notice? Pale, slurred speech, shaking, personality change, weakness?

      I didn't have an episode for about a month and I thought my multivitamins and vitD had solved it, then Friday after a long drive and no meal by 3pm I could hardly move and just lay there like a zombie, so with me perhaps tiredness and not eating is a trigger, however most people don't get affected this way even if it wasthat.

      Drink lots, eat healthy, exercise don't let the dr tell you its just dehydration or panic attacks . Sometimes with some people it is, but there are so many forums describing these kinds of symptoms it must be something.

    • Josh_76
      Josh_76 traci70474

      Posted

      traci70474 I had very similar symptoms to yours.

      Detached from reality and felt like I was in a dream. I could

      speak but felt real slow. My eyes seemed to be blurred and my heart would race. I dealt with this weekly for 5 years until one

      night after work I had a gran mal seizure for 30 minutes. I

      don't remember anything about it except waking up in the

      hospital. Dr's ran lots of test and put me on anti epileptic medicine. After several more seizures I am now doing much better. The old symptoms of the dreamlike state is very rare as well.

      Maybe once a year.

    • gina83634
      gina83634 Josh_76

      Posted

      Hi josh, ive been experiencing these symptoms for 4 years it started from nowhere, to me it felt like epilepsy but without the seizures, the doctor told me this is impossible, im feeling like this about 4 days a week, i just wish they would stop putting it down to anxiety. As sad that it is that so many people suffer this illness im glad im not alone.
    • faz1234
      faz1234 wendolph

      Posted

      Hello, was just reading your posts and was wondering if your DR did a test to check your IRON levels (I mean your Ferrous Sulphate levels)? Note that this is different from all the B Vitamins incl B12.  Lack of FS in the body or if your body is unable to absorb for some reason can cause all sorts of problems mentally and physically such as dizziness, disorientation, panic attacks , shortness of breath, breathing problems etc etc. This is just a thought - that something as simple as that can result in bigger issues. 
  • traci70474
    traci70474 Pageside

    Posted

    I appreciate your reply. Trust me, I have documented EVERYTHING. My daughters first episode was summer 2013 and lasted 8 days. She was fine for several days following and then boom~hit again for another week. She explains not hearing herself speak~a disconnect from reality, everything seems "dreamlike" and she has very very little short term memory. She basically slept non-stop during each episode and I've noticed she seems to crave sugar???. After no sign of this damn fog for nearly 2 years its back. She feels it coming on and can tell when shes "getting better" aka-headed back to reality. This time much like the first episodes is following a medical proceedure, antibiotics, and running hard with little sleep. 

    Its outrageously frustrating, this is an 18 year old girl and doctors can provide ZERO feedback. We must find answers and I pray the solution to rid her of these episodes. 

    • wendolph
      wendolph traci70474

      Posted

      I had exactly that as a teenager I called it an energy loss , shaking, weakness, eating half a bag of sugar. Diabetes tests and all other test normal. Have her thyroid tested just in case but those arnt really symptoms but I have an underactive thyroid which effects every function in the body. Vitamin check etc

      As she is a teenager, drs think it will pass im afraid. Keep at them and insist its not normal and potentially dangerous , maybe get reffered to a neurologist or endocrinologist . Good luck x

    • traci70474
      traci70474 wendolph

      Posted

      Thank you so much for your reply. This is such a crazy scary time and its just the worst when doctors shake their head and look at you as if youre crazy or all is simply "in her head.". Our daughter is an active no drama girl, just graduated with honors and is due to head off to college in August. We have been to an endocrinologist and nuero doc, had thyroid tested, tested for lyme, we've done full bood panels, MRI, catscan, spinal tap...etc etc. All "normal." UGH....I know someone out there can help, it's just finding that someone.

      Thank you again for sharing, there is peace in hearing others stories. It helps to know we're not alone. Happy day to you!

    • Calvinharris
      Calvinharris traci70474

      Posted

      It sounds like your daughter is suffering from depersonlization/derealisastion

      Its completely harmless and is a symtom of anxiety

      Some people have it for years some people it lasts for a day

      Alot of people get it after smoking pot and having a panic attack

      There is acually a movie about it called "numb"

      Please look into this there is a ton of information and the best way to overcome it is to compeletely accept it or try ssri medication

    • DogDays
      DogDays traci70474

      Posted

      IANAD, but I would like to suggest asking a physician to order a white blood cell labeled SPECT scan, or one combined with a CT, and to focus on the neck and head. Inflammation may be overlooked in a regular MRI or CT, but the WBC-labeled scan will allow it to most easily be noticed. Increased pressure inside the head and neck pressing on cranial nerves or the brain stem might cause these problems.

      There is a lot of research pointing to dietary triggers of inflammation, such as grains, gluten, and other foods, as they alter or feed the gut flora, and possibly result in a bodywide inflammatory response. Trying a strict diet, and beng vigilient about logging reactions to foods, might offer some insight. 

    • Pageside
      Pageside DogDays

      Posted

      When I fall into these "episodes" or disorientating "spells" I always feel pressure towards the back of my head, specifically the back right. It's a pinpoint pressurized sort of pain and it goes away when the episode goes away. I've always thought it was something ostensibly physical like this...I'm definitely going to look into a neck scan. I have gotten brain MRIs and CT scans but they looked specifically at the brain, and nothing else. I like where your head is at (no pun intended) because I've always felt this could POSSIBLY have something to do with this issue of ours.
  • Calvinharris
    Calvinharris Pageside

    Edited

    Also guys if your episodes are only 20minutes look into reactive hypoglycaemia

    It is from a drop in blood sugar after comsuming a lot of sugar/carbs

    Emis Moderator comment: I have removed the link to the specific site as users can Google the term.

    • wendolph
      wendolph Calvinharris

      Posted

      Hello Calvinharris, one of my drs suggested this years ago but I was never tested for it. Its quite possible and I often think mines energy related. Its not always after food though, sometimes its hours after or when I haven't eaten. Ive had it alot while on weight watchers or daily when working. My 3 aunts have mitochondria but my dr won't test me as its a maternal disease and they are on my father's side of the family. My mother was never tested for it. My episodes are rare but my low energy is more frequent perhaps daily the older i get but i have low vitD too.
    • teres
      teres wendolph

      Edited

      Hello All - Im new here and was passing by because I was also considering getting testing for MS.  Several months ago, I was diagnosed with a blood condition:  Hyperammonemia.  My liver is not properly filtering toxins (particular ammonia) so I get fog, confusion, forgetful as in alzheimers, blurry vision, headaches.  This was discovered on a fluke and was done by running a fasting blood ammonia test. Ammonia is a neurotoxin an causes dementia like symptoms in addition to wreaking havoc on your bones and joints.  It is not generally done in the normal course of doctor tests so you have to request it. In my case I had seen a kidney specialist and told her I was tasting ammonia... quite nasty by the way in the mouth.  My levels were retested several times and were at 150 which is at the level of coma for some people.  Im educating others to have their ammonia test but be sure they ice the specimen right away.  As it turns out, I will be getting a diagnosis of some form of metabolic liver disease because my liver athough healthy in other aspects has not been filtering out the toxins and ammonia is deadly to the brain.  Please check this out.  The liver and brain work together.  If liver is not filtering or kidneys not working, you can have a blood condition affecting you all the way around.
    • Pageside
      Pageside teres

      Posted

      Thanks so much for the insight here teres. Very interesting that you started getting an ammonia-like taste in your mouth...do you know what caused this? Were you a drinker in the past? Still are? Genetics? I'm willing to try any/all tests at this point.
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