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

  1. #11
    Distinguished Community Member agate's Avatar
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    Quote Originally Posted by hootswithowls View Post
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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
    There's only a limited time allowed for editing posts. It may be only 24 hours? It's probably too late to edit the post. If not too much time has passed, you should see an "Edit post" button.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

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  3. #12
    Distinguished Community Member agate's Avatar
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    HWO, when you say

    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.
    have you been able to figure out if there is actual hearing loss? If so, it would be good if you could give the doctor some details about it--which ear (or is it both ears?), how long it lasts, whether it is total or partial.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

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  5. #13

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    I was just reading this....maybe it's a cluster headache? https://www.verywellhealth.com/heada...erosis-2440798

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  7. #14

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    Probably this is unrelated, but a few years ago over a 6 month period (back when I was not having any of these current MS-y symptoms), I had 2 cases of subconjunctival hemorrhage in my left eye....I was a little worried when it happened again after 6 mos., but I think I saw an optometrist who didn't seem alarmed. It's probably unrelated, but this stabbing/burning/cold feeling in my head on the left side makes me think of it.....no eye pain or vision loss, though.....

    I don't get headaches very often, and when I do, they don't feel like this stabbing/burning/cold thing - they are a dull ache, and they're usually symmetrical....

    Thanks,

    HWO

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  9. #15

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    Quote Originally Posted by agate View Post
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    HWO, when you say

    have you been able to figure out if there is actual hearing loss? If so, it would be good if you could give the doctor some details about it--which ear (or is it both ears?), how long it lasts, whether it is total or partial.
    No, have not figured it out, and if there is hearing loss, it's not permanent....seems that minutes, maybe hours later, it's not as bad. Tinnitus is always still there though and in both ears - just sometimes screams in the left one when I'm having these head symptoms, and it's the left one that feels the hearing loss - but only when symptoms are intense.

    I noticed the tinnitus in both ears, which seemed to come out of nowhere at least a year ago. One thing that has happened over the years is a sudden ringing maybe in one ear the dissipates to nothing - I figured that was normal. I also ignored the tinnitus as there was no other symptom. A few months later, I ended up with that patch of numbness feeling on my back - also ignored it - figured it was because of how I was sitting, but that one intensifies now with these other symptoms, too. The tinnitus and patch of numbness have been waxing and waning for months, but the 4/30 was the beginning of these far worse symptoms of head pain/burning, dizziness, weakness in legs (also comes and goes in intensity), and numbness/burning here and there in various limbs - also waxing/waning.

    But all these things and nothing dramatic that a doctor can "see" in a clinical sense, apparently. Well, I guess I need to wait for the MRI and hope these things don't get worse before then.....

    I am pretty frightened, and these last two weeks have probably been the worst of my life as these symptoms seem to be adding new bells and whistles....I'm scared of that's next. :-(

    Thank you all for the feedback and support,

    HWO

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  11. #16
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((hootswithowls))))))

    BACK!

    Just to clarify ~ I don't have MS, but the wonderful friends here let me hang out with them.

    Have you consulted an Ear, Nose, Throat specialist? An ophthalmologist? If not, then I would add them to your list of specialists to help rule in/out possibilities for your symptoms. I think someone also suggested seeing a Dentist, which might be helpful too.

    I'm a bit of an expert in seizures, as both of my sons had epilepsy. An EEG may not show seizure activity, if a seizure isn't present/ongoing. Seizures are frequently associated with sleep, either falling asleep or awakening. Here are the various types of seizures for you to peruse to see whether anything sounds similar to your symptoms:

    https://www.epilepsy.com/learn/types-seizures

    Your anxiety certainly is understandable. Would it be worth it to you to wait until you can have an MRI in a newer machine, if it means that you would get more accurate results? You have so much happening to you, and you want answers, so using the latest technology might provide you with what you need.

    I'm glad you returned here, so that you can get support and caring from these experienced experts.

    Sending healing energy your way ~

    Love & Light,



    Rose
    Last edited by Earth Mother 2 Angels; 06-02-2019 at 03:48 PM.
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.


  12. #17
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    HWO,

    I have the very definite numbness, tingling, burning in my feet 24/7. I have had it go into my hands and arms and I freak out. Also, I have extreme cold in my feet (sometimes hands). It is not like when the outside of your skin gets cold, it is more like it is inside my feet. This is very often and the only thing that helps is putting my feet in very hot water and then putting heavy socks over them. This is not the same as having it in your head.

    Of course, I am a very definitely diagnosed person with MS. I think you have had some very good advice in this thread. I hope you will follow through with as much of it as possible.
    Virginia

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  14. #18
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    Quote Originally Posted by hootswithowls View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Probably this is unrelated, but a few years ago over a 6 month period (back when I was not having any of these current MS-y symptoms), I had 2 cases of subconjunctival hemorrhage in my left eye....I was a little worried when it happened again after 6 mos., but I think I saw an optometrist who didn't seem alarmed. It's probably unrelated, but this stabbing/burning/cold feeling in my head on the left side makes me think of it.....no eye pain or vision loss, though.....

    I don't get headaches very often, and when I do, they don't feel like this stabbing/burning/cold thing - they are a dull ache, and they're usually symmetrical....

    Thanks,

    HWO
    Now that you mention the hemorrhage I should tell you it is very possible to have ear hemorrhages too. Your symptoms of ringing and dizziness sound exactly like this post about vertigo and ear hemorrhage https://createadaptablelife.com/inside-a-vertigo-attack Read the entire thing especially the comments which may point you in the right direction. Weakness in the legs is extremely common during dizzy spells I'm told.

    I agree with Rose. Please see an ENT! I had a dizzy spell once so I know how unpleasant it really is, and I sincerely hope the dizziness stops immediately!
    Last edited by funnylegs4; 06-02-2019 at 05:59 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  16. #19
    Distinguished Community Member Howie's Avatar
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    Thumbs up

    Just reading through this, we, and you, are just guessing. It COULD be many things, but the MRI and a good doctor to read the results, will tell you exactly what the problem is, and be able to start treatment to make it better.

    I personally HATE to wait, on anything. But in this situation, you have to. Just remember, the MRI will end the guessing about what's going on. Best of luck to you.
    Evolution spans the Universe.

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  18. #20
    Distinguished Community Member agate's Avatar
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    HWO, you say:

    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 wonder if you might have bee experiencing what the experts call loss of proprioceptive sense? I neglected to mention that when I was having so many problems with electric-shock sensations plus all-over warmth (and a feeling that things were spinning, but not so severely as to be real vertigo), I also didn't know where my arms or legs were unless I looked at them. That is loss of proprioceptive sensation, I found out later.

    I still have it and am thoroughly used to it now. Sometimes it takes odd forms. I used to look at my arm and find it in a very odd position, going every which way, and I never knew it was doing that until I looked at it.

    If you were having that loss of proprioception, you might have felt that you were a piece of celery, it seems to me. It's hard to perceive yourself at all in that state.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

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