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Thread: Hallucinations when I close my eyes to sleep....

  1. #1

    Default Hallucinations when I close my eyes to sleep....

    Hi All,

    Undiagnosed but having a flare of "something" after 15 years of virtual peace and not even thinking about this stuff. One thing that I remember having years ago has now returned but is worse, and I think I even asked about this here years ago, and I don't think many of you had it. Anyway, it's almost what I'd call hallucinations....or maybe just weird thoughts, maybe even detached thoughts.....and it only seems to happen when I close my eyes to go to sleep at night. Last night, my symptoms (including numbness/burning/tingling in various limbs, which moved around) worsened after I laid down to go to sleep, and this happened the previous night, too. Sometimes there was pain like maybe a cold kind of pain on the left side of my head. When I closed my eyes, I just had weird kind of detached thoughts. The only other time I've had something like this, and maybe some of you can relate to this, is when I've had a high fever, I also have that kind of weird sleep disturbance - it's not a nightmare since I'm not actually asleep. I don't even know how to explain it, but it's terribly uncomfortable, and I'm guessing it's probably some kind of inflammation somewhere in my brain that's causing it. This is a pretty awful symptom - and when I open my eyes, I feel very uncomfortable with a cold feeling in my head and even a certain amount of pressure around my nose and sinuses - but I have no allergies and no sinus problems....and this issue is another thing that comes on, and in minutes usually fades off. Before going to bed, I wasn't even feeling this symptom at all. This morning, it was better, but now head stuff has returned.

    Has anyone had anything like this? It's kind of disturbing and also scary....

    Thanks,

    HWO

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  3. #2
    Distinguished Community Member agate's Avatar
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    HWO, in the years when MS was coming on in a big way but I still had no idea what it was, and for a while after it was diagnosed, sometimes after lying down I couldn't go to sleep for a long time because my entire body seemed to be vibrating with electric shocks. Sometimes I felt very warm on the outside, as if slightly feverish, but chilled to the marrow inside.

    I noticed this most if I'd been doing something physically strenuous (shoveling snow, raking leaves), and it might be days or weeks before it calmed down. The "solution" was to stop doing the strenuous activities that triggered it. Not always possible, I know.

    As for the head sensations, have you been for a dental checkup? I've had similar head sensations but often they are sinusitis. However, some have turned out to be activated by a tooth problem I didn't know I had. The dentist told me that that could happen (but only in the upper jaw teeth). You might want to give your teeth a once-over to find out if one of them is painful or loose or cracked or missing a filling--and pay close attention to the gums, looking for swelling and redness or other signs of infection (pus).

    So often what looks like a neurological problem due to MS or some other chronic disorder turns out to be a neurological problem triggered by something more simple--and fixable. I'm in favor of looking for that simple fix first.

    You mention hallucinations but that doesn't seem to be what you're having. Hallucinations are sounds you hear that aren't really there or sights you see that aren't really there. Some people have hypnagogic sensations while drifting off to sleep, and these are sometimes referred to as hallucinations. But you don't mention them. You're half-asleep and start seeing weird designs or colorful abstract patterns, maybe changing rapidly. I've had these sometimes. But this isn't what you're talking about, I think, and they're not abnormal.

    One more thing, and I really hesitate to mention this because it sounds like telling someone how to write. A person's writing style should be what it is. It's not up to us here to try to change it or criticize it. If people here wanted advice on grammar, spelling, or usage or any other subject related to writing, they would sign up for a course in English somewhere.

    However, many people with MS have vision problems and find it hard to read dense blocks of text. Some may just skip over your posts.

    If you could hit that "Enter" key now and then to make more paragraphs in your posts, that would make them much easier to read.

    I've copied and pasted your post here and broken it up so you can see the spacing:

    Hi All,

    Undiagnosed but having a flare of "something" after 15 years of virtual peace and not even thinking about this stuff.

    One thing that I remember having years ago has now returned but is worse, and I think I even asked about this here years ago, and I don't think many of you had it. Anyway, it's almost what I'd call hallucinations....or maybe just weird thoughts, maybe even detached thoughts.....and it only seems to happen when I close my eyes to go to sleep at night.

    Last night, my symptoms (including numbness/burning/tingling in various limbs, which moved around) worsened after I laid down to go to sleep, and this happened the previous night, too. Sometimes there was pain like maybe a cold kind of pain on the left side of my head. When I closed my eyes, I just had weird kind of detached thoughts.

    The only other time I've had something like this, and maybe some of you can relate to this, is when I've had a high fever, I also have that kind of weird sleep disturbance - it's not a nightmare since I'm not actually asleep. I don't even know how to explain it, but it's terribly uncomfortable, and I'm guessing it's probably some kind of inflammation somewhere in my brain that's causing it.

    This is a pretty awful symptom - and when I open my eyes, I feel very uncomfortable with a cold feeling in my head and even a certain amount of pressure around my nose and sinuses - but I have no allergies and no sinus problems....and this issue is another thing that comes on, and in minutes usually fades off.

    Before going to bed, I wasn't even feeling this symptom at all. This morning, it was better, but now head stuff has returned.


    Has anyone had anything like this? It's kind of disturbing and also scary....

    Thanks,

    HWO
    This isn't meant as a criticism of any kind--just a suggestion for a way you could make your posts more readable for those here whose eyes don't work so well.
    Last edited by agate; 06-02-2019 at 10:04 AM.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  5. #3
    Distinguished Community Member Sunshine's Avatar
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    I wonder if you have periodic seizures. Ask for an EEG.

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  7. #4
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    I met someone with epilepsy from a meningioma the other day. Her seizures sounded a bit like your symptoms. Her seizures are from her temporal lope being irritated.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  9. #5

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    Thank you, Agate. I had forgotten that was mentioned before years ago - in terms of being more careful about dense paragraphs and such for folks with ON. Thank you for the reminder on that.

    I just now tried to go for a hike with a friend but had to turn back because of the intense dizziness and ice pick/ice cube/burning pain in the left side of my head that seemed related to the dizziness. It really is horrible and feels like torture when it's at its most intense. The aftermath leaves me with blaring tinnitus in my left ear along with a feeling of hearing loss. This has happened before (recently) and eventually gets better....but I'm having an awful attack of it right now.

    I was tested for seizures years ago via EEG and nothing. But all of this stuff is now back in full force. I can't believe it....15 years of nothing and now suddenly this stuff and more, some of it all over again, out of nowhere. I remember less intense versions of this same feelings from 15+ years ago.

    In the meantime, still have the tingling/burning/numbness traveling here to there, but that's the least of my issues - this head thing is the worst.

    I'm not sure what to call what happens when I close my eyes and somehow have these disturbing things in my head - it's not so much visions. I'm not even sure how to explain it....I don't know that hypnagogic hallucinations (looked it up) is quite the same as this is less visual and more a feeling of me not being me but some object.

    I remember distinctly telling Catdancer about this 15+ years ago, and she brought up the book "The Man Who Mistook His Wife for a Hat". I read the synopsis of the book, and it sounds like maybe something like this. At the time, I had had this "hallucination" that I was not me, but I was a stock of celery. I know that sounds crazy. But then and thus far now, this weird stuff only has happened when I close my eyes and start trying to fall asleep. If I open my eyes, it stops, and I once again am me. I know this probably sounds like a drug trip, but all I'm currently taking is vitamins and 15+ years ago, not even vitamins.

    I am convinced this symptom has something to do with the inflammation going on in my head as when I do open my eyes (usually because I'm alarmed by my own out-of-body/altered thinking), I often notice that I have some kind of dizziness or that cold feeling in my head.

    I have been slumped on the couch writing this, and over the last 15 minutes, the ice/stab/burning on the left center of my head is much better..... but I don't know when it will return. It's a relief that it's gone for now, though because when it's bad, it kind of just incapacitates me.

    I hesitate to go into these nighttime "hallucination" details with any doctors - as I know it sounds crazy, and when I search for "hallucinations" here, I see it doesn't seem to be a common issue. I wll mention it but will probably stick to discussion the horrible cold/stabbing/burning at the left center of my head and the dizziness that seems to be associated with it.....not vertigo, more of a light-headed/unbalanced feeling.

    Thank you,

    HWO

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  11. #6
    Distinguished Community Member Sunshine's Avatar
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    Call neuro MOnday morning and insist on an appointment. You donít have to say hallucination, Say Bizzarre visual disturbances that seem to be coming from your brain and bizarre unwanted thoughts. I had this a few nights ago and it freaked me out, it was like being psychotic. I think it was from overstimulation by a house guest, but I dunno.

    I would want to be sure that there isnt a brain bleed, or a tumor or epilepsy. Insist.

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  13. #7

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    BTW, Agate, I would edit my single-paragraph post, but I'm not sure how to edit it....doesn't seem to be a link for anything but reply or "reply with quote".

    Thanks,

    HWO

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  15. #8
    Distinguished Community Member Sunshine's Avatar
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    Also, have you read the book Brain on Fire (its also a Netflix I think). Its about a woman with neuro like symptoms who was hallucinating. They put her on a psych ward. Turns out she had a teratoma of the ovary. It created this storm in her brain. They treated it after scratching their head for weeks as she deteriorated because they locked onto dx of schizophrenia and at that time it was rarely known in neuro circles.

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  17. #9

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    Hi Sunshine,

    Yes, the nighttime hallucinatory thing when I close my eyes feels very much like what psychosis or or a bad drug trip must feel like and freaks me out.....I am not a drug user - never have been....am too much of a control freak.

    My neuro is out through Wednesday, but sometimes I feel really panicked about all of this stuff especially this cold/jabbing/burning feeling in my head.

    BTW, it seems it's rare, but apparently MS can even cause full blown psychosis. Have you seen this Dr. Boster video? https://www.youtube.com/watch?v=HBEk7Vd9di4&t=163s

    I'm scared because all of this stuff is worsening.....worried how bad it's going to get if this is MS and an exacerbation of MS. Seems I first had a hint this was coming on 4/30, and since then, it's been worsening.....and again, none of it for 15+ years and now boom....is this common?

    Thanks,

    HWO

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  19. #10
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    I heard Parkinson's can cause hallucinating and they have medications for it so hopefully you can get some relief. Your brain might have edema.

    As to the dizziness/numbness/burning that sounds like something is effecting the thalamus portion of your brain possibly. I wrote a film about a stroke survivor called "A Stroke Of Endurance" http://cripvideoproductions.com/astrokeofendurance.php and through that process happened to meet a few people with thalamus strokes who would have horrible dizzy spells(like the one 17 mins into film) and an intense nerve pain like sensation because the sensory part of the brain is in the thalamus and went haywire.

    High blood sugar can also cause brain malfunction and nerve pain.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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