Wednesday, February 2, 2011

Meniere’s disease and being disoriented

Meniere’s disease brings a lot of trouble into your life. The symptoms can cause your world to turn upside down (no pun intended). I know for me that the vertigo is the worst because it comes unannounced and sticks around for a long time. But I have also had other symptoms like balance problems where I feel that I can’t trust myself at times to walk a straight line as if I were drunk. And of course there is the stress of worrying about having an attack that never leaves. Tinnitus which is common among Meniere’s patients is something that I occasionally have but not that much. One symptom that is not often mentioned, and I don’t think that I have written about it is being disoriented.

What is disorientation?

According the medical dictionary disorientation is “a state of mental confusion characterized by inadequate or incorrect perceptions of place, time, or identity. Disorientation may occur in organic mental disorders, in drug and alcohol intoxication, and, less commonly, after severe stress.”

I have certainly felt that way at times especially after I have had a particularly bad attack. Although I know where I am at there certainly is confusion at times.

What brings on the disorientation?

Although the above definition says that being disoriented from severe stress is less common, it probably plays a big part when it comes to Meniere’s disease. The spinning from vertigo also has to be considered to be a big part of being disoriented. Anyone who has become dizzy, whether they have Meniere’s or not, usually is disoriented to some degree.

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  1. I´m not sure I really understand what disorientation means but maybe it´s what I have experienced but I call it "problems with my concentration". Sometimes it´s hard to make a conversation because I can´t find the right word or forget what I am going to say. I can feel confused and forget things more easily now. And I´m not that old yet so I cannot blame my age. I have thought about it like this: a healthy person can walk, talk, keep balance, hear other people without any effort. With menieres your brain is busy all the time with keeping your balance, sort every input if your eyes are twitching, trying to make sense of different sounds, keeping the tinnitussound away... So I have blamed my confused head on all these things that keeps my head so busy. Sometimes I feel that someone, Mr Menière perhaps, has taken over my head and is using it for his own purposes. I want my head back!!!

  2. Susanna, I know exactly how you feel. I want my head back, too. I think you're on the right track about disorientation, and I have a huge problem with that, too. This brings in the biggest issue of Meniere's for me: The fact that I look perfectly normal to everyone else, but I am struggling mightily to do the most simple tasks.
    I find that if I turn my head quickly, it brings on immediate disorientation, and I have to hold still until it passes. And if I'm in a crowd or in a moving car, so that what I'm seeing involves a lot of movement, that also brings on disorientation. So malls, airports, train stations, heavy traffic are all exhausting to me now. It's incredibly frustrating.
    My secret weapon here is to get past my shame about asking for help. I cried when I arranged to have wheelchair assistance on my recent trip to India--but I knew how disorienting it would be for me to go through the security lines, try to find my gate and get there in time, handle customs and immigration in a foreign country, and simply be in the right place at the right time when there was going to be a swirl of people and activity all around me. So I swallowed my pride and asked for the help I knew I needed.
    My husband has learned to look around for me when we are doing errands and make sure I am steady on my feet. He's gotten very good at holding out his hand automatically when we are walking on snow or ice so I can grab on for stability. Meniere's seems to have brought out his chivalrous side, although sometimes he loses patience.
    Slow down, ask for help when you need it, and let people know what you are going through. Those are my approaches to the disorientation.
    Do you suppose that ever goes away, if you've been treated for years, have done the gentamicin shots or even had surgery? I hope so. I hope that continuing to try to behave as if I'm having a normal life will result in enough adjustment that I will FEEL more normal.
    But I'm not holding my breath waiting for it.

  3. Hope you don't mind me popping in here. I was hoping to ask a question about Meniere's.

    I have been having a right ear problem for about a year now. This is actually NOT the start of this though.
    I have gotten "dizzy spells" since I was young. I can remember being 12, and having periods of time when, if I turned my head or looked to the ground, my head would spin, and I would hear swishing in my ears.

    I am now 42. Over the years, it has gotten more and more frequent.

    Like I said, last year, my right ear would throb. I also noticed alot of vertigo episodes. No ear infection at all... been to ENT many times.

    The ear finally calmed down as far as pain goes, but I often have a cloudy feeling in that ear. No congestion.

    THe other big thing that is driving me NUTS in loud ringing in my ears. It is almost constant... but is louder at times then others.

    Question number one.

    Can the actually dizzy part of Meneires last for several weeks?? This past episode started about 3 weeks ago, and I am still struggling. When I change my head position... I get dizzy to the point of feeling like I am going to throw up.
    It has become less severe then when it first started 3 weeks ago, but still here.

    My second question: Is meneires connected with ringing in the ears?? It is more like a hissing sound for me. There are times when it is so bad, I hear a "metalic" sound when I talk.

    Any information you can share iwth me would be greatly appreciated!

    ps. I can attest to the foggy brain. I do not feel as sharp as I once was. I also really struggle now with being able to focus, read and study. I cannot get that focused anymore lately

    Kim in Atl Ga.

  4. Hi Kim,
    in some folks a meniere's attack can last for a long time in my own case the worst attacks usually lasts for several hours. after the attack I might be tired and out of sorts for a couple of days.
    as for the ringing in the ears, tinnitus is very common with meniere's patients. I don't have a real problem with that but there are things that can be done to help.
    thanks for commenting and stay in touch

  5. Hi Kim,
    Vertigo seems never ending to me. I noticed your in GA. I think we may have a connection in OUR latest dizzy spurt. The weather changes going on since Jan. 10th in the southern states has badly affected me, I'm in TN, I've been non stop dizzy with no relieve since the 1st snow. Horrible way to find out snow actually affects me more than rain storms. I'd love to know why. Any one know?
    Tinnitus is a pain, I have my own personal sound effects studio playing in my head 90 % of the time so much so that I've taken to humming or making groan sounds constantly to drown them out,I'm annoying myself in the process. LOL

    Kristy in TN

  6. Kim, I noticed when I first began to have problems with Meniere's that I would be dizzy for a week or two or even longer leading up to a bout of nausea, after which it would clear up. And yes, tinnitus is definitely connected with Meniere's and can take the form of a ringing, hissing, roaring... almost any kind of distracting noise in the affected ear.

    I have found it interesting how the sounds of my tinnitus change from time to time. There was a period when it sounded like ice cubes in a glass of water, making that tinkling or crackling sound as the ice expands and breaks up a little in the warmer liquid. Right now it's a low hum. Often it's a high-pitched ringing. When it's really bad, it's a very distracting low-pitched roar. I assume this has to do with the amount of fluid being retained in the ear.

    You could also, however, have BPPV (benign positional paroxysmal vertigo) which is linked to loose crystals in your ear canals and causes dizziness when you move your head. I had that for awhile and couldn't look up OR down.

    I would ask your ENT about that. There are exercises you can do that will help it, if it is BPPV.

    Good luck!

  7. Its been a while since I was here last. Thanks for the responses.
    I am in another "bout" of dizziness. This time, it is throwing a curve ball and doing something different.
    It started when I laid down in bed. Anytime I would turn, spin, spin, spin.
    I did the epley maneuver because it seemed this time located on the left side. It didnt work.
    I had that severe dizziness for several days. I "thought" it went away because one night, I laid down and didnt spin... HOWEVER, I began spinning when my eyes were closed only. I would spin just as bad as previous attacks WHEN I CLOSED MY EYES. It is not effected by movement... I can wake up in the middle of the night spinning, and it will stop the second I open my eyes.
    I am now also having "visual" effects. Migraine type lights flashing in my left eye. Also, at night when I close my eyes after laying down, with no feelings of dizziness, I can feel my eyes fluttering back and forth really fast.

    I have tried taking meclizine but it isnt working for me this time.

    The dizziness when my eyes are closed has lessened over the past week, but has not gone completely away.
    My ENT's here locally just keep telling me its Eustation tube dysfunction. I refuse to pay them another time for their flagrant disregard to what I am telling them, and their laziness, and complacency.

    Do any others out there have "symptoms" like mine with menierres??? I am getting a bit freaked out that it m ight be something more serious.

    Metro Atlanta

  8. Kim~
    The eye fluttering I also experience, and it's called Nystagmus. Your eyes actually shake back and forth.
    Try this test: the next time you feel the eye movement, lightly cover your closed eye lid with your fingers, and you will be able to feel the movement under your fingers.
    This is not's just another one of the joyous (LOL) symptoms of Menieres.
    Some of these ENT's and ENT specialists are clueless about what all happens with Menieres.
    There can be so many weird symptoms involved.
    Don't let them bring you have enough to deal with.
    I've gone through several periods where I couldn't turn over in bed w/out dizziness.
    I'll also just be dizzy (aside from the vertigo) 24/7 for days at a time.
    You are not alone in these symptoms, so don't freak out.
    One thing I might suggest though... if you have concerns of a tumor, have an MRI done.
    It won't lessen the Menieres symptoms, but it could give you peace of mind.
    Also..if the Meclizine is no longer doing the trick, you might want to try Valium.
    That's what many of us who have really bad Menieres use. It has a quick sedating effect on the inner ear.
    Good luck and hang in there!

  9. hello kim
    try propranolol, i am on 40mg in the morning and 80mg at night daily.
    i cant stress it enough, this drug really keeps the severe symptoms of menieres at bay.
    before propranolol i had everything you describe.

  10. Kim, don't panic. I know it's easy to say that, but most of us have been where you are now. Can you try a different ENT? Many don't really understand Meniere's, and a lot of doctors seem not to want to take the time to sort through the symptoms and try different treatments until they find one that helps.

    Did the doctor ever prescribe an MRI? They should. The first ENT I saw said it was probably Meniere's, but he sent me for an MRI to rule out the possibility of brain tumor. I should add that I think it's EXTREMELY unlikely that you have one.

    Valium probably would help with your current sypmtoms, but you will need a doctor to prescribe it, and your current ENT sounds unwilling to do much. Is that a fair statement?

    I'm picking up my new glasses today, and they have a prism in the lens. This is designed spefically to deal with nystagmus by forcing your eyes to focus together and stay put. This might be worth trying for you, too. That's something you could also ask a new ENT.

    If you can find an ENT in your area who specializes in balance issues, that would help. Try to find a doctor who will advocate for you, not just tell you it's a dysfunction of some kind and send you away.

    Good luck, and hang in there. I know it's maddening, but there are things you can do. You just have to keep pushing for more help.

  11. promethizene seems to work better than meclizine. my doctor also started me with betahistine. it has to be compounded. it is used in the UK for weight loss and vertigo. over in the US it is approved for vertigo. It worked great for several months for me (except for weight loss!!!. He had me on 4 mg but it can be upped in strength. It must be kept air tight. I had no apparent side effects from it.

  12. David, I had the gent. injections 3 weeks ago, while I still have double vision, I can now pin point times of no dizziness and off balance ( like normal!) Now since I am better, I have mini-attacks of what feels like a vertigo attack starting but it never gets worse than swaying and rocking sensations, a little bit of nauseousness, but no spinning when I close my eyes like in my severe vertigo attacks. I am afraid an attack is about to start. When you were recuperating, did you have these spells and now the million dollar you think they are mini vertigo attacks or just balance/dizziness attacks? thanks for all the input!

  13. Hi Susan,
    I am glad that you haven't have any big attacks after the gent injections. It took a few months after the injections before I started having the big attacks. I can't say for certain but I know that one of my doctors told me that after the shots the problems would be mostly balance/dizziness.
    unfortunately in my case I also had the vertigo attacks as well.
    good luck
    and let us know how you are doing

  14. Hello Everyone! I'm Kendra. I came across this blog as I was looking online for different reasons why I have been having such bad ear problems. About a year and a half ago I started to feel really sick with dizziness, pain and fullness in my ears, balance problems and just didn't feel well. I went to the doctor multiple times, at first it was an ear infection but even after antibiotics and clearing up the infection I still have the problems off and on. The doctor says I have sinus problems as well which can cause some of the symptoms.
    Basically I feel like my doctor doesn't really know whats going on. My friend told me about Menieres disease and I have been looking it up and I feel like I could have it. So I was hoping that someone could check out my symptoms and see if they sound like someone with this disease.

    So here they are (I don't always have all of them at the same time, and I only get some of them every once in awhile but I'm going to list them all)

    Dizziness (Vertigo)

    Fullness in my ears and sometimes my head

    Balance Problems

    Ear and head pain

    Kind of blurry vision or trouble seeing. (I can see but sometimes I feel like I have to focus my eyes to see, like when I'm reading.)

    Disorientation/ confusion (this is a newer one. I noticed it the other day when I was trying to think how to spell the word "disease" and I really had to think about spelling the word. It kind of scared me because its an easy common word and it took me a minute to remember/ think of it.)

    I'll take any comments or help I can get! thanks so much for your time.

  15. Usually you won't get a firm diagnosis of Meniere's until you begin to experience hearing loss. Any signs of that? There are a lot of problems that can cause similar symptoms to some extent, but the triumvirate of Meniere's is usually:

    Aural fullness/pain
    Loss of hearing, full or partial.

    For a real diagnosis and better treatment options, you should consider seeing an ear/nose/throat specialist, or if you already are seeing an ENT, try getting a second opinion.

    Good luck. I hope it's NOT Meniere's. :)