Meneire's Syndrome - newbie here

[CynthiaC]

My name is Cynthia. I was diagnosed with classic Meniere's Syndrome 16 years ago. I have been through heck and back with this disease but have pretty much got it under control now, meaning no major vertigo attacks anymore. I am severely hearing impaired but do work full time and carry on as if I can hear.

I would love to chat with other Meniere's folks.

[meniero]

HI, Well, I guess I am at the opposite end of the spectrum. I am still in the process of trying to figure this all out! I was diagnosed as having Meniere's disease, but I am going for a second opinion to a neurotologist. My story is on a different thread entitled "Meniere's Disease?" Basically, I am the mother of two young children trying to get my life in order without feeling dizzy constantly, I've had one major attack and one minor one, since the last episode a week and a half ago, I still have dizziness with movement (rolling over bed, looking up, looking down), so far as a I know, I do not have any hearing damage, every once in awhile I get a dull pain in the back of my throat and in my right ear. My ears do feel like they are always popping or cracking. I'll tell you what, I am sad, I am always holding back tears, trying to figure out how I got here, feeling like my life has been turned upside in one month. I just want to be normal again! So, your struggle, I know has been long, and I would love to hear your story, b/c you sound very positive. I go through moments when I feel like I can conquer this, and others when I am so frightened that this awful feeling will never go away, it's a terrible ride and I want to get off! So, I'd be very interested to know your story, your symptoms and how you got to the point where you no longer have vertigo. Talk to you soon! m.

[cupoftea]

meniero,
i also have meniere's. it's been 7 years now and seems like a lifetime. my children were little when i had my first vertigo attatck so i know how you feel meniero. my husband had to come home from work on a few occasions to help since it's very hard to take care of kids when your world is spinning. now they are older and that is a big help.
Do you have any help so you can rest and recover? It takes some time to recvover from the spinning. Move slow and watch any sudden movements. I avoid the computer, tv, bright lights and noises. Did your doctor give you any antivert (mesclizine). Valium also helps with the panic.
Hang in there.

cynthia,
wow, 16 years! I'm glad you came on these boards. Not many true meniere's out there. My right ear is bad. Can't hear at all out of it. But sure can hear all that awful tinninitis. Allergies. I think that's what started this for me. Have you tried a hearing aid? Not sure if they will work or not. I am due for a hearing test soon and am interested in a hearing aid. Any thoughts?
Congratulations on still being able to work.

nuffs,
hey! have you gotten your mri report? hope they have ruled out the meniere's.

everyone take care,
cupoftea

[CynthiaC]

Cup & Meniero -
I also posted on the other ear board, before I realized I really belonged on the inner ear board.

When I was 38, my kids were 6, 10 & 12. I got sick pretty suddenly and it is too long of a story to put it all here but will try to sum it up.

My doc didn't have a clue what was wrong with me, I ended up in the hospital, they did an MRI to rule out a brain tumor or God knows what else. This was after about 5 major vertigo attacks. Doc still didn't not know what was wrong. My mother insisted I go to an ear specialist. I have a history of ear problems since I was a kid and she is smart and just knew it had something to do with my ears and sure enough she was right. The ear specialist said within about a minute, "you have classic Meniere's Syndrome". This will sounds crazy but by this time I was elated to actually be able to put a name to what was making me so sick. I knew what was wrong with me! Then came the realization that I was in for a very long haul with this disease.

I started to call around in a bigger city, close to where I live, to try and get a doctor's appt with a different ear specialist to get a second opinion. Not one single ear, nose and throat doc in that city would see me. They did not take Meniere's patients they said. That was when I knew I had something very complicated going on with my ears.

I ended up at the Houck Ear Institute in OKC. They ran a battery of tests on me for two days, they actually try to induce a vertigo attack. Fun, eh? Anyway, my tests came back, Meniere's in both ears. You don't have to have this in both ears by the way.

Since the first ear doc that diagnosed my Meiniere's I have taken meclizine for dizziness. At the first slightest jerky eye movement or dizziness, I take a half a meclizine. (I break them in half) If I continue to feel dizzy or have jerky eye movement, I will take another half and so on until I feel ok. TIRED but ok.

This is a important trick, if you will, that I have learned to do when I would feel a dizzyspell coming on. Sit and focus very very hard on one thing. Say a point in the end of a flower on the wallpaper, a specific tile on the floor, anything, just keep totally staring and focusing on that point. Do this as long as necessary to get your eyes "to hold still". Focusing has helped me a lot. I used to get car sick very easy. No way could I even read a road map even without getting sick. Since I have been "focusing" I can now read, sew or whatever while I am in the car traveling, without getting car sick. It is amazing.

I also take a mild diuretic everyday and have for the last 16 years. That is the other thing the doc prescribed for me. It helps me keep the fluid retention in my ears down abit. I think of it as a carpenter's level and the bubble on the level so you can tell when things are exactly level, you know what I mean? Well, when my fluid level is ok in my body and head, my "bubble" stays level and I don't get dizzy or sick. Simple as that.

Another huge part of treating Meniere's for me is watching my sodium intake. They have treated this disease over 100 years by prescribing total salt reduction. That is pretty hard to do for me but I do not salt foods unnecessarily and watch salty snacks. If I eat salty foods, you can see it in my face the next day.

Anyway, I have more stuff I would like to share but his is pretty much an overload right here.

I hope anyone who sees this might be helped in some small way with dealing with their Meniere's. When I got sick, I felt like I was on my own and pretty much that is right. They don't know what to do for me so I have had to figure it out for myself!

I will post more later.

[Diane720]

I'm beginning to think I may have Meniere's. I have been countless times to the clinic for dizziness...been told it's from inner ear infection...been told it's from my high bp...been told it's my sugar. Until last week (my most recent visit to the clinic) the nurse practitioner suggested I get a referral from my internal meds doctor to see an ear, nose and throat specialist, and get tested for meniere's. I'm thinking it could have been caused by a plane trip 8yrs ago....I've never been the same since that trip. I do have panic/anxiety disorder, and I can usually tell when my dizziness is being caused by that, but I am dizzy....and feeling "off" 24/7.

I heard there isn't much they can do about meniere's, other than some sort of therapy, which is a bit frustrating. I hate to think I might "finally" get diagnosed, only to find out there's no help for it.

It's become so tiring and depressing not being able to function normally.

Diane