Wednesday, November 25, 2009

Meniere's disease and eye movement

Recently I received an email from one of my readers, Jeff, about nystagmus, which is an involuntary eye movement. He makes some excellent observations drawing on his own experiences with Meniere’s disease and the movement of his eyes.




I'm still not sure I've got a handle on what nystagmus really is and what is means (isn't it just a complex description of a symptom?), but I get two different types of eye effects depending on the severity of an attack.


With a bigger attack (less frequent for me now, thankfully) the main symptom is the 'washing machine' effect where the world appears to be spinning around me. (Occasionally it's not as strong and instead of rotation is a shift from one side to the other.) Naturally my eyes try to sort out the mess by tracking the movement for a second, until either I blink or my eyes snap back to the centre and start tracking again. I wouldn't describe this as completely involuntary, though, more of an instinctive response; if I want to I can stop my eyes tracking in which case they would drift to one side and lose focus. A relatively big attack is gone in an hour.


With a lesser attack, I get what feels like a slight side-to-side shaking of what I see, which results in a slightly blurry picture and difficulty focusing closely. Now I *would* describe this as involuntary as there doesn't seem to be anything I can do to affect it. In fact, I'm not sure that my eyes are moving at all and that this isn't something that's just happening in my brain! After about 20mins the shaking has usually gone.


These lesser attacks are a more recent development. I think they're probably less severe versions of the bigger attacks, but they do feel like something slightly different at the same time.


My own attacks have changed over the past year. When an attack occurs my eyes tend to ‘jerk” to one side as though someone had pushed my head to one side. There is a little spinning after that and I do feel very tired after the experience.


Thanks Jeff for the great comment!

11 comments:

  1. David, I was concerned and worried about the eye movements in Meniere's or vertigo attacks. So I videoed my face while my eyes were flickering side to side, but guess what? There was NO movement at all, so I guess the eye movement is feeling that make sit appear as though our eyes are moving.....wrong balance signals sent to our brain. I am glad you brought this up because few people talk about it.

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  2. That is interesting! The way it feels you would think that there would be a lot of movement. You are probably right about it just being the signals from the brain.
    David

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  3. Thanks for the top billing! Fortunately I'm not even getting the eye shaking most of the time anymore, it's mainly come down to weakness in my neck and head sensitivity to movement.

    However, what I have noticed is that sometimes my eyes get very tired, and/or reading the computer screen feels rather bad when I otherwise seem reasonably OK. What I'm wondering is whether the nystagmus is going on but in a miniscule way, more like a vibration than a shaking. So even without realising it my eyes have trouble focusing and get tired.

    This eye movement aspect is really tricky!

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  4. Thank you Jeff, I always appreciate your comments and the great information that you give.
    David

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  5. I was diagnosed with meniere's disease a couple of years ago - it is very mild and comes on as a result of allergies. I've been waking up with headaches (sinuses) and have eye pain - is this common?

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  6. From what I have read there is a connection between allergies and meniere's. Headaches are also common but I haven't heard about eye pain.
    David

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  7. I've recently discovered that this eye shaking/vibration has its own name, Oscillopsia. It seems as with many symptoms that there are several possible causes.

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  8. Thanks Jeff! I hadn't heard of that.
    David

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  9. I was diagnoised with memiere's 7 years ago. It started with pictures moving from side to side. Then the vomiting started and lasted for several hours. It took months to get a diagnosis. The treatment was Valium and Zofran for nausea. I also had 5 steriod injections through my eardrum. Before this I had already loss 75% of my hearing in the right ear. The hearing did improve somewhat. I was mostly symptom free for several years. Now I have started with more severe episodes than before I have vomited an average of every 3 days since Dec. 20th. I am on a very strict salt free diet, low sugar, also try to stay stress free but how when you never know when an episode will start. I take Valium after I feel the dizziness start. I do have the feeling of eye movements. My Otolaryngolist has observed these movement. Does anyone have symptoms this severe? I'm 72 years old and had no symptoms until I was 65, very few headache. I've been told this usually starts earlier in life and get better with age.

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  10. From what I have read meniere's can start at any age. I was in my forties but I read about kids getting it.
    As for the severe symptoms, there are a lot of people who have constantly had bad attacks on a regular basis. The problem with meniere's is that it can go away for a while then come back with a vengeance.
    I had gent injections in 2008 and that helped after a rocky start. Over the past month I have been feeling worse than I have in awhile.
    So you can't really tell with this disorder.

    thanks for comment and please stay in touch and let us know how you are doing.
    David

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  11. Hi. First I am so happy to have found this site. I was diagnosed with MD about 6 years ago. Although experiencing a MD attack is by far a truly unpredictable and horrible experience; I do find some comfort knowing that I am not alone. To know that others experience what I live through, oddly, I find some comfort in that. I guess it is true when they say "strength comes in numbers" To be honest, I do not know, nor have I ever met anyone who has MD so many times I feel so alone.

    I have nystagmus and for me, it seems as though every time I close my eyes, they are still moving. I can feel them rolling when I lay down to sleep at night. I also have difficulty when looking at computers, florescent lighting, quick rapid movements and loud noises. I haven't been able to drive long distances, no more than a few miles and sometimes, even when I take walks, if a car or especially a motorcycle passes by, I feel as though I will lose my balance. It was interesting to hear about the woman explaining her experience with her washing machine. I can't stand in front of my washer either. It makes complete sense to me now why not.

    I had a period of no MD attacks for about a year but it seems as though they returned in full force this past summer.I am currently taking a Medical Leave of absence from my teaching job of ten years and am seriously considering disability. Any pointers on that?

    I am now in the process of getting the steroid injections into my eardrum. I have had 2 so far. Unfortunately, I developed an ear infection, so I can't give good results as of yet, but I am trying to stay positive. I will let you know if it works and if I would recommend to others. Crossing my fingers and toes too :0)

    Staying positive is the key to our illness. Our everyday life is far more difficult than the average daily life and yet it seems as though many people don't realize or understand that. We have the invisible disease. I try to find quotes and inspirational verses daily so that I can mentally move ahead in life. It seems as though with MD, we lose so much and with that comes much pain. My daughter told me that "Pain is inevitable. Suffering is optional. We can choose NOT to suffer even when there is pain." So even though we have to live with the burden and the pain of MD, we can choose not to suffer from it. It is difficult to avoid the pain since at times we don't know what to do to avoid it but we can focus on the positives in our life. Our family, our days that are good, etc. To have MD, is to be mentally strong. " Tough times don't last. Tough people do."

    Thank you for your posts. It seems as though you too are trying to live a full life even though it is a life with MD.

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