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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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  • marianne93130
    marianne93130 Pageside

    Edited

    I suffer from very similar symptoms as most of you on this forum. Not only cannot not bring the word forward at times by the time I get the one word out 3 times in a row, then Zi can't remember the rest of the sentence. It's so embarrassing. When I have bouts with it I sometimes notice swallowing difficulties as well. I'm currently being put through lots of tests at the Cleveland Clinic. My heart beats very rapidly, i have delayed gastric emptying, and chronic urinary retention. I have been diagnosed with Dysautonomia. It is a degenerative condition of the autonomic nervous system. I have a condition of the parasympathetic nervous system as well. There are many different conditions but they umbrella them all under Dysautonomia. There is Multiple system Atrophy that they are trying to rule out right now with me. I have five biopsies tomorrow and a thermoregulatory test. A good neurologist is who you should see and a endocrinologist because with women especially it is something as simple as an extremely low TSH. Hope this might help someone.
    • Pageside
      Pageside marianne93130

      Posted

      Hi Marianne,

      So so sorry for the delay here. I haven't logged on in awhile since visiting this forum used to cause me disappointment in the fact that I was still dealing with this condition at the time. The fact of the matter is, I'm still experiencing these episodes and almost daily, but I'm coming to terms with them. I've rejected jobs that I know I cannot fulfill, I avoid situations and environments that I know will trigger these episodes. Sucks, yes, but if that's how I have to live my life, then so be. I've come to realize that I won't be "normal" from here on out, unless I one day miraculously wake up and the condition is gone. 

      Please tell me how Cleveland Clinic went, I'm extremely interested. I have always wanted to toss everything aside, shut down for awhile and check into the Clinic to see if I can figure this damn thing out. I do foresee myself going there one day for this exact reason. Feel free to message me directly if you don't feel like sharing your Clinic review and any diagnoses and treatments publicy. I truly do want to hear about the experience.

      Shaun

    • william52109
      william52109 Pageside

      Edited

      Hi,

      My wife has had the same exact issues right down to the exact same placement of head pain. But with her she also developed a white tongue and really irregular periods. We've been following your story with great interest.

      Like so many others we have read about possible vitamin D deficiency, MS, and even down to something as simple as hormonal imbalances. Her vitamin D is in the low deficiency range, and right when we went to go get her hormones checked and start with brain scans, she hot pregnant so now it isn't possible for us to do that.

      We are so desperate to find answers as it is impossible for her to function in every day life. She doesn't want to clean or go out because the symptoms are debilitating. I hope you figure it out or we do so we can help each other.

    • Mamadyer
      Mamadyer Pageside

      Edited

      Okay, first of, let me say, I am NOT a professional-- it's just that what you're describing sounds extremely similar to what my husband experienced for years. He referred to them as 'spells', and would have them three or four times a week by the time I met him.

      His parents sent him to a therapist (!) because they thought it was some sort of panic attack.

      After we'd been married a month or two he had a grand mal seizure, which prompted the drs to do an eeg. Eeg showed abnormal brain waves, he was prescribed anti-seizure medication. He has not had any spells or seizures since then--(except for the couple times he tried to wean himself off the meds.) That was over 22 years ago.

      Before he was diagnosed, I witnessed a couple of his 'spells' and it just looked like he sort of spaced out, but I wouldn't have thought it was a big deal. Except that when he came out of his spells, he'd be so pale and cold and sweaty, and just ill looking.

      Anyway I hope you find your answer, I am sorry that you're suffering.

      Laurie Dyer

    • rikkijo314
      rikkijo314 Pageside

      Edited

      Have you had an EEG performed by any chance? Your symptoms seemed very similar to what I started dealing with a few years ago except my episodes usually caused a lot of vomiting. I thought it was an issue with my eyes because it would happen if I were to read a book for too long, look at a computer screen for a while, or drive at night and stare at on coming headlights. Then the headaches would start. In the back of my head and it was just awful. Anyways, I have now been diagnosed with occipital epilepsy and take an anticonvulsant everyday. It has helped tremendously! I talk to people without slurring, or even more embarrassing, having to excuse myself to vomit!

      I hope you are doing better, I know this is an old thread I just found it and thought I would chime in.

  • mjaxx
    mjaxx Pageside

    Edited

    Complex partial seizures can present a lot like this. People who experience them can often sense that it is beginning to happen in the same way that sufferers of migraines can discern an aura before a migraine begins.

    As different parts of the brain can be affected in different people or during each individual seizure, the symptoms can vary a lot, but amnesia, disconnection from reality, and impairment to speech, vision, and thought processes are generally common symptoms.

    Other symptoms depending on the region of the brain being affected can include: hallucinations or distortions of vision, smell, or sound; unresponsiveness, fear, and repetitive or monotonous behaviours. If the frontal lobe is affected, swearing, aggression, and personality changes are common.

    If you are suffering from seizures like this, MRIs and other exams aren't likely to reveal what is going on unless performed during the seizure.

    Silent migraines are another possibility, and migraine medications aren't always effective for everyone, meaning you may still suffer migraines even if you've tried most medications to prevent or treat your symptoms. Other conditions that are likely to cause symptoms like yours are disorders of the thyroid, lyme disease, MS, severe vitamin D deficiency / hypocalcemia and other electrolyte disturbances, and autoimmune diseases like lupus and sarcoidosis. Some of these can be very hard to diagnose.

    Ideally, if you can manage to get a brain MRI or EEG during one of your events, this will reveal seizures. If not, an EEG as soon as possible after the event may still show signs of a seizure, whilst an MRI won't help at this point unless there is a structural anomaly causing the problem. As you've had a clear MRI, this should rule that out, and also serves to make MS less likely.

    For other tests, consider having TSH, T4, and T3 tested to gauge your thyroid function. Both hypothyroidism and hyperthyroidism can cause mental disturbances. A vitamin D test can also be performed, as well as calcium and other electrolytes. Severe vitamin D deficiency causes osteomalacia, and the hypocalcemia of this condition impairs thinking and consciousness. Vitamin D itself is required for cognition and many other bodily functions. Finally, consider testing ANA, RF, CBC, CRP, and ESR to rule out autoimmune conditions. A positive ANA or RF can mean that your are suffering from lupus or neurosarcoidosis, which can both cause psychological symptoms. The CBC is a blood count panel to test for signs of autoimmunity, anemia, and infection, and the CRP and ESR are markers of inflammation that can also suggest autoimmunity or infection is present. This will help provide more insight into whether the problem is hormonal, autoimmune-mediated, infectuous, or a vitamin / mineral dysfunction.

    • Reney88
      Reney88 mjaxx

      Posted

      What can I do to get over this really fast like I mean of me fast because if I feel like I'm getting totally sick I feel like I'm going to throw up, I'm scared to try to walk, my hips been bad lately I'm told.. I can't quit crying, overwhelmed by a sense that it's all bad, ya... like I'm still in that recurring nightmare right now.

      This doesn't happen very often but I hate it when it does I feel like my heart is about to explode I can't get my breathing down, overwhelming sense of fear confusion uncertainty whatever same thing I just want to get back to me so what do I do... like right now?? Is there anything that can help maybe.

      I'm trying head over the pillow dark room thing... it's not working yet

    • Reney88
      Reney88 mjaxx

      Posted

      What can I do to get over this really fast like I mean of me fast because if I feel like I'm getting totally sick I feel like I'm going to throw up, I'm scared to try to walk, my hips been bad lately I'm told.. I can't quit crying, overwhelmed by a sense that it's all bad, ya... like I'm still in that recurring nightmare right now.

      This doesn't happen very often but I hate it when it does I feel like my heart is about to explode I can't get my breathing down, overwhelming sense of fear confusion uncertainty whatever same thing I just want to get back to me so what do I do... like right now?? Is there anything that can help maybe.

      I'm trying head over the pillow dark room thing... it's not working yet

  • Smiggs
    Smiggs Pageside

    Posted

    1mjaxx - Thanks for your info! I watch this discussion for my daughter. We could not figure out her disorientation episodes, and neurologists could find no cause. Last month, she got diagnosed with Lyme disease. Seeing you list that as a potential cause of Pageside's problems helped confirm for me that Lyme has been my daughter's issue. Unfortunately, most of the Lyme specialists in this country are booked months out. But one doctor in Seattle, Martin Ross MD, posts his Lyme protocols online. We are now on a journey to heal her.
    • ra7777
      ra7777 Smiggs

      Posted

      Yes, I was told my symptoms are from Lyme disease also, "neurological Lyme".  I noticed your post was 2 years ago.  Is your daughter better?  What type of treatment has she had?  Thanks so much!

    • ana85762
      ana85762 Smiggs

      Posted

      Hi how is your daughter doing ??hope shes feeling better..what meds has helped her ? Pls let us know .thank you

  • Einna151
    Einna151 Pageside

    Edited

    I know this is really old, but just wanted to share what I thought. Not sure if you have figured out what's going on yet but I experience basically the same exact thing and one of my triggers is when I am standing and having a convo w someone. It's almost like I forget where I am but not really because I know or I feel like I'm not really there. I've had to quit jobs because of this it would happen when talking to my boss (I was a nanny for a short time) and id first try distracting myself and instead if start panicking and get a horrible anxiety attack because the feeling scared me so much. Also happens when I'm driving, I don't black out or anything it's just kinda like I'm disconnected from reality..it's similar to the hypnosis one would experience when driving on a long highway and just being on auto pilot so to say, but not really lol. Wel anyway I can't even explain the feeing but it's very unnerving and what I've been told by my gp and psychiatrist is that it's called derealization and Depersonalization. Look it up and see if it's what ur experiencing. At first it came and went for me, and then not to scare u but I woke up and everyday the whole day I felt that way. The only way to make it stop is by ignoring it. Do u have a history of anxiety because of so I'm certain that's what ur experiencing. It feels different for everyone and no one really explains the feeling the same. Hope this helped.
    • Pageside
      Pageside Einna151

      Edited

      Einna,

      Sorry for the delayed reply - I've been avoiding this thread for quite a long time in an effort to essentially not think about the condition that I'm currently still experiencing, and almost daily. I've read up on derealization and depersonalization and I think those two terms nail my symptoms on the head (no pun intended). I do have a history of aniety, however, even when I'm at my least anxious (and also least depressed moments) while I'm out with buddies for example, one of these episodes can surface without notice and I'm left sedated, numb. How is everything going for you now?

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