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Debilitating, intermittent "episodes" of disorientation & brain fog

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Pageside
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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

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  • chris2
    chris2

    Posted

    I do sympathize OP. I've had some (not all) of those symptoms and they couldn't find anything wrong. So it made me feel like a fraud or a hypochondriac!

    One thing that occurs to me is did you get a blood panel done? ie for thyroid, B12 deficiency etc. And did you get all the tests for MS? I'm asking about the latter as my MRI for that included the spinal chord.

    I also used to get the occasional migraine - thankfully very rare these days.. A Migraleve pink usually sorts it or if I don't catch it early - Imigran.

    Finally it may sound silly but could it be a spinal issue? It might be worth seeing a chiropractor.

  • Pageside
    Pageside

    Posted

    Hi Chris2,

    I got a blood panel a few years back and everything was normal done, but I'm certainly not against getting another. No MS tests - is that a blood test? And as for B12, there was a point when I was actually taking it daily for probably 4-5 months for this specific reason and it did not help at all unfortunately.

    I used to see a chiropractor weekly for 3-4 years because I was an athlete and had some back issues as a result, but haven't gone to see him in probably two years. I'll give that a shot as well. I'm literally willing to do/try anything at this point. Would you mind sharing what your symptoms were like or how you felt and what you did to cope or treat them? Thanks for the reply!

  • chris2
    chris2

    Posted

    At one point it felt like my knees were made of cotton wool and sometimes I felt I was slurring my speech like I was drunk. Sometimes I had difficulty even physically forming the words. Brain fog too. They tested for MS with an MRI of the spine and it was clear. I went for help to a centre at Rawdon nr Leeds run by the MS Society where a visiting consultant said it had all the hallmarks of MS. I had a course of sessions in their hyperbaric oxygen chamber - which seemed to help a little. But Lyme can also have similar symptoms - and I did have what the overseas doc called tick typhus while working abroad. So I also had a Lyme test which came back negative - apparently the test can be unreliable though. I just plodded through and it did all eventually lift but a few years back I started with occasional morning lightheadedness - it felt like an alkaseltzer was dissolving in my head! My memory was poor too. They tested me for coeliac disease as there can be a neurological component to that and also thyroid function (another notoriously unreliable test) and everything was clear. But we eventually found I had been getting a constant low level dose of carbon monoxide at home and now that I have sorted that the symptoms have mostly gone.

    I take sublingual B12 which is supposed to absorb better and a good brand of fish oil.

    Having said all that some of what you describe OP has similarities to migraine. I found mine was linked to certain food.

    Anyway good luck. If it's migraine they recommend keeping a diary to identify triggers.

    More slightly off beam things to try might be something like shiatsu or acupuncture.

    Whatever - it does sound to be very debilitating and you need to keep on at the medical professionals to get some answers.

  • Pageside
    Pageside

    Posted

    Thanks for the info & reassurance Chris - really appreciate it. Hopefully I'll hear back from some more people who may be experiencing similar symptoms
  • daniel31171
    daniel31171

    Posted

    I've been having similar symptoms for about 5 years. Neither the duration nor debilitation is as severe as described, but the general "mystery" conditions are quite similar. Perhaps my comments will add to the discussion.

    My "brain fog" or "fugue states"... come every four or five months and last for a day, or (as of yesterday), two days... with intense panic-like symptoms that come and go with a minute or two about every four hours.

    Is all that too much for one sentence?

    I have learned to recognize the onset by the quality of my dreams the night before. They are different, more detailed than normal AND when I wake, I have a hard time either remembering them fully or distinguishing them from something that might have happened or something I saw on television. In other words the edge between dreamworld and waking world is blurred. This goes on for a few hours, then the panic-like attacks start: sweaty, tight vision, maybe a headache and immediate memory loss. (which returns)

    Regular MDs and specialists were mystified, and unconcerned, because of the short non-debilitating duration. The neurologist pleasantly wrote me off as "having episodes of altered-consciousness"

    I'm not too worried these days (age 66). I'm thinking it's a form of residual Lyme. Blooming, having its way and fading, only to come again under the right circumstances (seasonal?, environmental triggers?)

    Dan

  • chris15711
    chris15711 Pageside

    Posted

    I'm having almost identical symptoms. I'll be feeling good - happy, confident, motivated, concentrated and then bang the brain fog comes, throat feels like it is closing in, inability to concentrate, complete apathy and then alter anxiety and depression.

    Any ideas?

    I've had a a fairly thorough blood panel done and everything was fine apart from h pylori. 

    I have extremely tight muscles if that means anything and i'm only 22

    • Pageside
      Pageside chris15711

      Posted

      Hey Chris -

      So sorry for the late reply. I have moved across the country a handful of times since writing this post. 

      I'm still dealing with the exact same symptoms/episodes/spells as described above. Your symptoms sound IDENTICAL to mine, but what exactly TRIGGER these symptoms? Anything noticeable? I recommend keeping a tab on when these happen and then reporting back here or to a doctor so everyone is better able to pinpoint the commencement of these symptom and spells.

      How's everything going for you now?

  • george5030
    george5030 Pageside

    Edited

    Hey guys just checking in to see how's it going for everybody? I started experiencing brain fog on and off but constant a month ago from what I believe is a sinus infection after a very bad flu. It's gotten better but I still experience it, its very frustrating. How's everybody feeling lately?
    • Pageside
      Pageside george5030

      Posted

      Hey George,

      I'm still struggling with the burden that is these disorientating episodes, and almost daily. There are definitely good weeks and days, bad weeks and days, and then very bad weeks and days. I've kind of given up on pursuing and reaching out to doctors about this issue because literally no one knows. One of the five neurologists I've seen put it into a great perspective for me,

      "I completely believe what you are telling me - the triggers, the symptoms, these episodes...everything. And, I'm sure there are others out there struggling with it too, but the thing is, this is essentially such a rare, unstudied phenomena that we don't have a name nor a cure for what you're experiencing. Who knows - maybe in 15 years from now more and more people will surface who are experiencing what you're experiencing, and then we'll have a better handle on what's going on and can actually research it."

      How's your situation going? 

  • wendolph
    wendolph Pageside

    Edited

    Hello I was wondering if you'd made any progress? Your brain fogs sound similar to the ones I get only I don't have a trigger. One of my neurologists has suggested silent migraine to me. It's just difficult to know when you're having one as you don't always get the headache.
    • Pageside
      Pageside wendolph

      Edited

      Hey Wendolph,

      To be honest, zero progress has made. I'm kind of floating along day by day and learning to live with this. Coping, as best I can. It truly has - and still is - making a massive dent on my general well-being. A real burden. As I mentioned above in reply to george5030, there are good days and bad days, and, for the most part, I know when these symptoms and episodes are going to surface due to the fact that I've pinpointed a majority of my triggers.

      What exactly are you experiencing? And what is a silent migraine?? I've tried a handful of migraine meds and none worked, with the most recent being Amitriptyline. Man, that stuff just knocked me the F out haha. 

    • wendolph
      wendolph Pageside

      Posted

      Hello Pageside, I love your comment from the neurologist about finding a cure in 15 years. I always imagine Bones from Star trek would zap me with his scanner and diagnose me in seconds and say heres a pill. Lol.

      A month ago i had an attack so popped into my gp, i could hardly walk, lightheaded, shaking stuttering, not able to concentrate and i tried to explain my symptoms. I couldn't understand when he said put your finger to your nose and i tried putting my nose on his finger lol, i managed to touch my nose but missed his finger touching the side not the tip while shaking. He said my breathing was uneven and my heart was racing. My gp actually said if they haven't found anything by now its probably panic attacks. The thing is going to see him slightly panics me as i know he'll send me away.

      I have not been tested for every condition and 10 minute appointment twice in a year with no follow up is not exactly trying to diagnose this. Unfortunately I have never had an episode while seeing a neurologist. Sometimes I wonder if my tests are on the low but normal edge of the spectrum so to a dr all these tests read normal but adding up they mean uh-oh

      its hard to explain these symptoms and there are so many conditions. The key is study yourself while the symptoms are happening. Ask yourself questions. I noticed last week my legs weren't walking properly so i thought ok am i paniking? No, im completely happy, im thinking clearly not lightheaded at all, so the walking problem must be different from the light-headedness problem even though sometimes they happen together.

      Recently i found i had a low vitD count so im taking vitD supplements and a multivitamin which includes magnesium and potassium etc as my gp didn't test for these when I asked. This week i feel amazing the best i have in a year.

      I have no idea what a silent migraine is lol, he said its a migraine affecting your vision thought other functions as a normal migraine but no headache so you carry on with things for longer so symptoms are worse. He suggested beta blockers but i was on antidepressants at the time and didn't want to mix them. My gp ofcourse said there more for palpitations and wouldn't give me them.

      Basically my symptoms come and go over the past 15 years. Im hypothyroid. Sometimes my legs don't walk properly its like wearing moon boots filled with concrete. This uses up all my energy and i start getting lightheaded, disatatched , confusion, i have to really focus. At the end im really panicy. But my walking is possibly separate. I thought walking might be a trigger , i can do heavy work and gardening and be fine but later it sometimes happens. Its happened talking to my friend but she didn't seem to notice . Sometimes when im just doing general stuff around the house it happens. Lightheaded, dizziness, confusion, trembling, unsteady, unfocused. If its severe even personality change where im shouting you don't care in my lovely slurred speech. But thats rare. I describe it as being drunk or having a hypo . My dads a diabetic and his hypos look like how i feel . I had this a month ago but only for a few days. I had it 2 years ago lasting a couple of months etc.

      I know its not nothing - maybe in 15 years.... Hope some of this helps.

  • benjamin5482
    benjamin5482 Pageside

    Edited

    Hi Pageside, 

    I can absolutely relate to many of the symptoms listed here. For nearly 3 years I've been battling a lot of baffling symptoms too, but the main irritant is a recurring fogginess and sense of emotional disconnection. I've had a number of tests, but nothing to shed any light on it yet. It seems to be exacerbated by talking and that leads me to believe that it may be TMJ related, as i have had on and off jaw clicking and stiffness issues for at least 10 years. It's so difficult to describe the sensation, but frequently i feel like my brain is deprived of enough oxygen, or that my head is filled with concrete. There is a noticeable decrease in cognitive processing. It's like driving a car with the hand brake firmly on.

    In additon to the fogginess and jaw clicking, I notice other things intermittently like a feeling of fullness in the ears and high sensitivity to noise. It's so difficult to know what is causing what and how everything is interconnected. I find that Drs are so willing to ascribe everything to stress, but in my case, the physical symptoms came first, and then as result of that I think my stress levels rose over time. It was not the other way around and I was never a stressed / anxious person previously.

    Anyway, very interested to hear if you've managed to shed any light on what caused your issues. 

    All the best, 

    Ben

    • Pageside
      Pageside benjamin5482

      Edited

      "Drs are so willing to ascribe everything to stress, but in my case, the physical symptoms came first, and then as result of that I think my stress levels rose over time"

      Dude, that is me to a T haha. Everything just started spiraling downwards...increase in episodes leads to more anxiety, more anxiety leads to more episodes. And yes, I know that anxiety can exhibit some pretty nasty physical symptoms, but I get these intense symptoms and reactions during times of ZERO stress, like when I'm on a freaking beach with all of my buddies in the middle of a Saturday when there's literally nothing to worry about. The talking and focusing on someone's face can trigger one of these episodes, which I think is absolutely more neurologically based. 

      I'm convinced it's some sort of Sensory Processing Disorder which can exhibit themselves in weird ways. And as I said above in response to george 5030, one of the five neurologists I saw put it this way (btw he doesn't believe it's anxiety or stress related either, but that the two can exacerbate the situation):

      "I completely believe what you are telling me - the triggers, the symptoms, these episodes...everything. And, I'm sure there are others out there struggling with it too, but the thing is, this is essentially such a rare, unstudied phenomena that we don't have a name nor a cure for what you're experiencing. Who knows - maybe in 15 years from now more and more people will surface who are experiencing what you're experiencing, and then we'll have a better handle on what's going on and can actually research it."

      Do you know what triggers your fogginess? It's super important to take notes of the things that do, because this is the first step towards realizing WHY these things are happening. It's like...why the hell is this happening to me right now? Can I avoid this? Since I noted my triggers I've been able to have more useful conversations with doctors and also other commenters on this page. 

      Have you seen a neurologist by any chance? I'm always interested in learning what other doctors have said regarding this matter!

    • kaylee68000
      kaylee68000 Pageside

      Edited

      hi, i was wondering if this is still happening to you, i know it’s been 3 years but this started happening to me about 5 months ago, i’m 15, and i’ve have a MRI and EEG done, both came back normal so i was wondering if you found out what was wrong with you yet?
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