Living with Meniere’s

I get a lot of hits on this blog. Some of you visiting are my friends and family, but others of you are strangers desperate for answers.  Whether you’ve found me through a google search, or have clicked through from The Daily Dish, it is for you that I write this post.  You have been drawn here b/c you, like me, suffer from Meniere’s Disease.

I don’t talk about Meniere’s very often, mostly b/c it’s so damn depressing, but today I am breaking the silence.  Yesterday the dizziness came out of nowhere.  One minute I was fine, the next – nearly on the floor.  Why?  Good question.  It could be a myriad of things, from food to motion to emotion.  But often it’s simply a change in the weather.  Barometric pressure can do funny things to a girl.  And as fun as it might sound to be a human barometer, it’s really not.  Right now I am practically strapped to my chair.  I walk the hallway, steadying myself with the walls.  Living w/ Meniere’s Disease is a literal roller coaster, and most often I try to ignore it away.  But today I can’t.  On days like this, the best I can do is stay calm.

What is it like, one of these episodes? Well. For me, they vary. Take today. I feel dizzy. Unbelievably so. There’s an intense pressure in my head, which gets worse if I move a certain way, or stiffen up, or cough or sneeze or chew – or pretty much do anything. I feel like a top that’s been wound too tight, about to spiral off into the universe.  I am trapped inside my own body.  Like a prisoner, I have no control.  So here I sit. Feeling sorry for myself. I know these episodes pass. It’s not forever.  But it’s hard to reason w/ yourself when you’re feeling so bad. Today it’s the dizziness. Other times, it’s my hearing. First comes the pressure.  I try to coax my ear from its hissy fit.  With increasing desperation, I try to keep it open.  I pop it, over and over.. but it’s no use.  Soon my ear closes off to the world.  The tinnitus grows, my hearing recedes.  Once again, I am half-deaf.  I am alone again, inside.

The doctors try, but they can’t do anything for me. Really. It’s amazing how medicine has made such strides, but so much remains unknown.  I get very philosophical when I’m like this. Forgive me. But I can’t stop thinking about it all.

32 thoughts on “Living with Meniere’s

  1. How miserable! I think I have it bad with sinus headaches, TMJ, and tinnitus! The dizziness would be horrible! I take it you can’t drive or walk. How do you even sit up? Hope it soon passes and you can get on with it!

  2. Well of course you can’t help but think about it, when it is inside your head. I don’t know if this helps you or not, but sometimes enforced stillness leads to awesome prayer times. You can begin by praying for yourself. But you’ll soon find praying for others take you out of yourself for a while, which often helps immensely. Meanwhile, I will pray for you, too, hon.

  3. I’ve always wondered how Meniere’s effects you, especially since I eat LOADS of salt.

    What was funny was how I didn’t notice how much salt was in my food before it got to the table. I was only paying attention to the salt I was adding. Once I started checking the sodium levels on what I buy, I was totally dumbfounded.

    I mean, WOW.

    I feel your pain on coping with the loss of control over your body. Even temporarily, it’s not easy.


  4. It’s tough being a barometer…especially when it effects your ears. With every step you take you need to be aware of 1) how your foot is placed on the floor being sure your balance is not excessively back on your heels or too much to one side or too forward, and 2) handholds wherever you are moving. Handholds you will find easily and you can bounce against the walls in the halls. Being dizzy effects your whole body and all systems. I bet you don’t want to eat anything. IF you want to drink flat gingerale, just put a few grains of sugar in a glass full to cause the bubbles to fizz out immediately. Good to know this whenever the family has upset stomachs. As the storm front passes, hopefully, you’ll feel better. I have a coleus? plant for you that I planted from cuttings Mom had at the house when we closed it up. The plant only gets watered once/week. It longs to sit on a wide windowsill again. We don’t have any here but you do. So when I next see you, the plant will be with me. The plant misses the old house air it has grown in in the past. Hope y’all have a nice Thanksgiving. Kate

  5. Got your box; thank you for returning my picts of the house. Our home was lived in, not a museum, as yours will always be. I’ve been thinking about the plant I want to return to the house, give to you; would it be unsafe for your animals to have it there? Would your bird try to nibble on it? I don’t know your bird’s temperament toward plants. What do you do with the animals when you go away overnight?

  6. love!!! i’m so sorry that you’ve been bottling this up! haven’t you learned that blogging is (for me) synonomous for complaining?

    let it all out–don’t hold back! sometimes the support you get can help you on your way.

    you know i’m thinking of you and wishing you well. i’m sorry that you suffer from this insidious syndrome and wish there was a cure or effective treatment.


  7. In one of those moments of clarity (and I’m sure you’ve already thought of this, but just-in-case)… is there a medication with a side effect that calms dizziness?
    I thought about it when I remembered that a few days without Zoloft makes me feel like I left my brain on the tilt-a-whirl.
    Not saying you should take an anti-D, but if that’s a side effect…

    Anyway, hope you’re feeling better.

    1. Hi Abbie, Yes I have a prescription for Meclizine, but I hate taking it. It never seems to help really – just knocks me out, makes me feel like I’m wearing a lead suit. To be honest, I’d rather have a glass of red wine and lay on the couch. On Good & Bad days! LOL

  8. Great blog….I know from my own experience and that of many who visit our online help group that, given time, good sensible nutrition and lifestyle changes can help greatly with Meniere’s disease…..especially quality supplementation.

    I know how you feel because I was sick for 7 years with Menieres. Still have it of course but I live symptom free.

  9. Dear DD, in my professional audiology life of over 30 years, I have of course come across many such cases, but to hear the classical symptoms described so personally is very moving.

    If your blog has done nothing more than touch an old ‘pro’, then it has been worthwhile. Thanks

  10. Here with you- doesn’t it suck? For me it’s mainly hearing loss and tinnitus and super sound sensitivity when the hearing goes out. I am new to it and it’s definitely depressing. Hang in there!

  11. I feel your pain. It’s hard to adjust mentally to the unknown of this disease. I have 40% hearing loss in one ear. From reading online it sounds like it always progresses eventually to take all of your hearing. Does anyone know if this is true? My diagnosis is Migraine/Menieres. I am on the low-salt diet and the no migraine diet which eliminates a lot of food? Does anyone else do this?

  12. Thanks Steven – always great to have more info. Take note, everyone!

    Susanna, I am also on the low sodium / no salt diet. Which does seem to help, though I still suffer from episodes w/out warning. When that happens, I mostly just try to stay calm, and positive. I guess it’s as much as one can do. I try to pinpoint triggers and avoid them at all costs. I don’t fly, for instance, and have stopped having dental work altogether. Fortunately I take very good care of my teeth, so it hasn’t been an issue yet. My mom told me they are now doing laser dentistry, I am hopeful that may be the solution. The weather gets me a lot of time, and anything that vibrates – the lawnmower for instance always throws me for a loop. But you have to do what you have to do. I have heard that if you go undiagnosed, the ear eventually burns itself out, and the disease may take the other one as well. My hearing is fine when I’m not suffering from an episode or weather change, etc. I try to keep looking up. Hope you can do the same. Take care, Christy

  13. Hi! I popped over to this post because it sounded familiar. My Father-in-law has something like this, although it’s called something different. It’s been a recent development for him. They had to sell their motorcycles and opt for a Corvette (poor them, I know), since it is too dangerous with his vertigo. Does the dizziness cause you to throw up, too? He now goes to a chiropractor, which has helped lessen the buildup in his neck and head. But that doesn’t mean it’s gone, unfortunately.

    It has to be hard when it just comes out of nowhere 🙁

    1. HEY! SO sorry to hear about your father-in-law. Dizziness is truly hard to live with; as humans we depend so much on our balance. I completely understand getting rid of the motorcycles (awful to hear that) but I cannot imagine riding one with my wacky ear. I don’t throw up – thankfully I have a stomach of steel for the most part – but I do get very nauseous. And depressed. And anxious. All very typical of Meniere’s patients – or anyone else who suffers from a chronic, erratic disease with no perceptible pattern, rhyme or reason(!!) where BAM! out of nowhere you go from fine to flat. Or deaf. Or both.. Ohh such fun!! You have to laugh. It’s that – or cry — and I’ll take laughter any day. 🙂

  14. Christy,

    I have the same symptoms as you describe, but I have migraine. Ask your doctor if you have migraine rather than Meniere’s (especially because of the timing of the onset and the lack of permanent hearing loss). A lot of neurologists believe that many cases of Meniere’s are misdiagnosed migraine cases. It is worth asking because migraine can be controlled. Good luck. You can e-mail me privately if you want to.

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