Debilitating, intermittent "episodes" of disorientation & brain fog

Okay, my wife's getting these now, but they have been preceeded by a bad and worse case of what the doctors term "Granuloma annulare"; which came up very quickly when she started heart medicine. I should say that today she treated the GA with vinegar (topical); so maybe the acetic acid threw off her pH.

But then, the hypertension immediately followed a miscarriage involving fetal calcification in the second trimester... making us suspect (unconfirmed) CMV.

Other things that may have triggered the episode may be chocolate...

So if any of these pop up in parallel with y'all, maybe we'll start to identify something.

Hi @Pageside. I notice you haven't posted for a while but I hope you see this. I have been experiencing EXACTLY what you describe. I wonder if you have discovered anything in the last months that might have helped or figured this out. I totally get your frustration. It's difficult for me to keep re-hashing my symptoms to friends/doctors only to get a blank look. I had a nurse talk to me after an ER visit about stress. I told him the same thing: When this happens to me, I'm totally fine. I'm not stressed, I'm not thinking about anything in particular - it just comes on like a wave over me. The reason he came out and talked to me in the lobby is because he's in his 30's, perfectly healthy and then he started experiencing all these weird unexplained medical issues so he said he could relate to what I was describing. He said he found meditation very helpful - the only thing that helped him. Someone in this discussion described the 'which came first?' scenario of did the symptoms bring on the panic, or did panic bring on symptoms? I haven't ruled that out but I really don't think that's what it is. The only thing I have noticed a connection with is being overly tired. In most settings - where I can be in control and not surrounded by a lot of people or bright lights - I calm myself down by giving myself permission to feel the way I am. I know what I'm feeling and I do what I need to to take care of myself. If I'm in unfamiliar or crowded situations, that's more difficult. I also notice that I'm exhausted afterwards and want to just fall asleep hard. I tell people it feels like sensory overload and my brain just needs to sleep. My sister had epilepsy before years before she died and she would fall asleep for hours afterwards. So maybe there is some similarity. I've had a CT scan and MRI and neither showed that but maybe it is a form of epilepsy that doesn't show up in tests? I don't know, but the main thing I wanted to get across was that I understand and I am very sorry you are going through this. I definitely can relate to you.

I have been experiencing these exact (minus the head pain) symptoms! I feel like Im losing my mind at times.  Ive become withdrawn socially.  This is not me.  I am usually lively and energetic.  I agree that the only way i feel better when an episode comes on is by trying to take a small nap....if i can.

Are things any better now?  I'd love to hear back with your findings or what you did to get better.

Hey man, 

I hope you log in every once and a while and see this. So, I have the same symptoms as you, minus the headaches. The triggers for me sound pretty similar - looking at something for a handful to several minutes causes the brain fog, disorientation, etc. anything from reading a book, using my phone, watching tv, having a conversation with eye contact, driving for more than 10 minutes or so (I can sit shotgun just fine though!) etc. I have also noticed that looking downwards exacerbates the problem (i.e. chopping veggies on a cutting board or something). Even typing this all out is going to be a huge trigger, but hopefully it'll be worth it!

I have had these symptoms for over 3 years now, started when I was 28 and am 31 now. Male, fit, active lifestyle.. no explanation why lol. 

I have had all the same tests that you mentioned and more. I am, fortunately, covered by the VA and they have worked really well with me in getting the tests that I want. Unfortunately, thru the brain MRIs, CT/X-Rays of every organ in the body, multiple blood tests, etc. nothing has helped and not much progress has been made. 

Story time (hopefully adding to the dialogue) - my symptoms started one evening in November 2014 while I was playing Diablo 3 on my PlayStation. After an hour or so of gaming, I started to feel really out of it, and in bad shape. Up until that point in my life, I had been a pretty hardcore gamer (usually playing at least 2-4 hours a day ever since I was 14), playing both console and computer games like WoW, Call of Duty, etc. so basically I was no stranger to video games. I had never had any symptoms like this in the past.

About 6 months prior to this first episode, I broke my jaw playing softball, but I had an uneventful recovery and haven't had any lingering issues from that. The reason I bring it up is because after I sought help for my new condition, they thought maybe I had CTE or some other form of brain damage from either that jaw breaking experience or from one of the several concussions I've had in life prior to that. But, I have had 2 brain MRI's done and they couldn't detect any abnormalities. My latest brain MRI (about 2 months ago) also included a scan of my inner ear, which is not something that they have tried before.

I have tried a litany of self tests at home as well. Honestly, one of the only things that has helped is alcohol. Marijuana can help some times as well, but it's hit or miss. Exercise can sometimes also help get rid of the symptoms if I have an episode prior to working out, but again, hit or miss. Sleeping at night usually wipes out the episode, but I have on occasion woken up from a normal night's sleep and still be triggered from the night before. This usually happens if I am bad about managing my symptoms and check Facebook before sleep. 

I am optimistic! Even after three years. This "mystery illness" has held me back both career wise and personal development wise. I have a great support network, but most days I feel next to useless as I usually struggle to cope with my inability to contribute meaningfully to my family and friends. I have aspirations to go back to school and make something of myself, but I cannot read a book or take online courses. My entertainment in life is down to a few meager things - I have a few close friends that understand my special condition and don't pressure me to go to movies or just hang out and watch tv with them (and I am ETERNALLY grateful for them) but outside of that I basically can listen to podcasts and Audiobooks. I used to be an avid hiker, but watching my footsteps on trails so I don't trip is more than enough to cause a long episode. I quit all of my summer sports in June this year, as even soccer was triggering it (not sure why, maybe just following the ball with my eyes for an hour??)

So, like I've said to other people, it's not a debilitating, life threatening illness, but it is terrible nonetheless. My neurologist is sending me to "vestibular physical therapy" thinking it might be an inner ear problem (who knows, maybe I broke my jaw a something happened in my ear) pending VA approval, so I'm excited to see if anything pans out for me there. I'll keep you posted.

I'd be interested in hearing more of your story and comparing notes. I honestly thought I was the only person on earth going through this. Feel free to PM me if you want. 

Please look into Mind Eye connection, which explains how damage in the brain's visual stimulus processing ability affects energy, focus, etc. Therapy is available with special lens.

Study also occipital neuralgia, this is not a typical symptom, but I know a patient whose brain gets fatigued due to the tiresome firing of the compressed occipital nerve, it is bothering the vestibular system, causing strange vertigo and derealization.

Hi Pageside.  I too would like to see a recent update on how you're doing.  I have episodes of not knowing where I am; literally, I feel like I've been plucked from my home and placed on Mars.  Everything looks foreign.  They last anywhere from 5 minutes to 45 minutes and there's no triggers for mine.  I also get the headache and now I'm getting a vision "pop" before they happen.  My situation, however, seems a bit different from what I'm reading here because I've been through all the tests (my neurologist thought I was having mini-seizures), and it was determined that it was happening because of the high dose of anti-seizure medication I take for a neurological condition.  Once I adjusted to the medicine, they virtually went away, until recently, when I had to start taking another of these medications in conjunction with the one I already take.  They're back and with a vengeance.  Changing my environment, nor sleeping, help.  The only thing that I've found that helps is to just play normal and do normal activities; my brain goes into auto-pilot and eventually I come out of it.  I remember people mostly, but I don't remember places or things.  It's quite scary, actually.  I think mine is still brought on by the high dose of anti-seizure medicine, but you never know.  Best wishes for you all, and I hope that someone figures things out and helps.  My sympathy and understanding is with you.