Is anyone familiar with Meniere's Disease?

[Pajama Mama]

I have had chronic ear ringing and ear fullness. I started having some vertigo and imbalance while walking. I went to an ENT and I have some reduced hearing in one ear which I suspected. I had an MRI last week and I'm waiting for the results rather impatiently. The most likely culprit is Meniere's Disease. Does anyone have this or know someone that does? I've been researching about it. If that's what it is I'll need to restrict my salt intake and give up (gulp) chocolate and (double gulp) coffee. Sigh

 

I had the MRI on Wednesday and I'm getting frustrated that the doc hasn't called. The MRI was to rule out a tumor and nerve damage. I assume I would have heard sooner if it was a tumor or nerve damage. I called yesterday and today. I know doctors are busy but dang it. Call me so I can start getting better. I am tired of having dh drive everyone, including me, around. There isn't a cure for Meniere's but I can slow it down.

 

I would love to hear from someone who has this disorder. Please reassure me that my husband won't be chaffeuring me for the rest of my life. I was going to get a part time job. But with my hearing getting worse and the fact that I walk like I'm drunk; I can't see many job openings for me.

 

Heck, if you don't know about the disorder just send good thoughts my way. Send virtual chocolate too since I'll be giving up the real thing soon.

[cjzimmer1]

My grandma has had this for as long as I can remember (so I'm guessing it's been at least 30 years). I don't know anything about giving up foods because I know she drinks several cups of coffee every single day. She eats chocolate fairly regularly too.

 

She just gave up her license last fall (at 92 and due to nerve damage from a failed back surgery nothing to do with the meniere's at all).

 

yes she walks crooked but it's just part of life. I have no idea if this is a normal treatment or something they did in the early years but they destroyed the hearing in one ear to slow down the progressing of it form spreading to the second ear. It still spread but much more slowly.

 

I really don't know alot about the treatment etc but wanted to let you know that yes it's possible to live with meniere's without totally sacrificing your life quality. For my grandma, the meniere's is simply an annoyance compared to her other health issues (meaning it's not really affecting her quality of life)

 

Hope everything works out for you.

[pjboysmom]

I've had Meniere's for eight years, and used to experience the symptoms you've described on a weekly/sometimes daily basis. The ENT put me on one course of Prednisone, very low sodium diet, low caffeine, and a daily diuretic pill (Triamterene/HCTZ). I vetoed the heavier drugs my first ENT wanted to give me (like Methatrexate) and found an ENT to work with me. The Meniere's has been much, much less active, and I usually have at most 1 major flare-up a year. I did lose about 50% of my hearing in one ear, but once treatment started the rate of loss slowed. Stress and sodium seem to be my biggest triggers.

 

Driving hasn't been a major problem. If I feel off, I don't drive. In my experience, I could always tell ahead of time if vertigo was coming on. I'm not sure if that's the norm or not.

 

Be encouraged! The Meniere's may go through a very active period, and then plateau for a long time. I'm almost to the point where I can drop the daily drug, and control it with diet alone. It doesn't rule my life like it did at first, but it is an occasional inconvenience. I think it helped teach my boys patience and empathy, though!

 

Blessings to you!

 

Michelle

[pjboysmom]

I forgot to add . . . I have about 2-3 cups of coffee a day! That I just couldn't give up, and I'm still ok! :tongue_smilie:

 

Blessings,

Michelle

[Greta]

My mother has it. She gave up her coffee (well, switched to decaf) and adopted the low-sodium diet and it has helped her tremendously! So please don't feel too discouraged - I know there is no cure but the treatment does seem to be effective.

[bamagirl]

My grandmother has it and my mom was just diagnosed. My mom has been having awful vertigo for almost a month now and hasn't been able to drive. Her doctor recommended therapy..she went to her first treatment last week and has been a lot better since. They work on balance exercises and do things to try and "re-train" the brain. Her ENT has been on vacation, so she is waiting on an appt with him to talk about meds, so I can't speak of those right now. Apparently, it's passed on genetically to females, so I guess there is a good chance I will wind up with it too :(

[Leanna Tomlinson]

I was tested for Meniere's three years ago. The ENT told me I had it, and then he sent me to a Meniere's specialist who said I did not have Meniere's. He said the discrepancy between my ears was not enough to be Meniere's. He said I have basilar migraines with a case of vestibular neuritis on top of that. He also said he thinks ENT's are "over diagnosing" Meniere's. He has changed several patient's diagnoses to "basilar migraines" which involve vertigo, ear fullness, and many times no headache. Vertigo and ear fullness can be very frustrating. My initial illness lasted 5 months. I did not drive during that time and felt ear fullness all the time except when I was on a diuretic. I have been much better since then. I will get vertigo when I get a cold, drink too much caffeine, a storm is coming, or I am in a loud place like a concert. I have not had the courage to get on an airplane since then, but I'm doing so much better, I might try flying soon.

 

My dentist also told me she had Meniere's. She was cured by surgery, even though she lost all hearing in that ear. I was all set to investigate the surgery in another state when my ENT specialist changed my diagnosis.

 

Did you see Starr's earlier post about her acoustic neuroma? I'm sure that's what they are also ruling out by your MRI.

 

I'm sorry you are having to go through this. Keep us posted. :grouphug:

Edited August 10, 2010 by Leanna

[RegGuheert]

...other than the fact that Alan Shepard, the first American in space, was later diagnosed with Meniere's disease and pulled from flight status in the Apollo program. Subsequently, he had some sort of experimental surgery, was returned to active flight status and was the commander of Apollo 14 who walked on the moon in February 1971.

 

All this to say that there is hope for those who have Meniere's disease.

[Pajama Mama]

Thanks for the kind words and reassurances. I have had poor eyesight since I was little but great hearing. It scares me a little to think that the hearing loss could be permanent.

 

I am a little hurt by my mom. I hadn't spoken to her for 2-3 weeks. She wouldn't call me back or she would answer and keep the call brief and then not call me back. She was busy with work. I spoke with her last night and she said that she's worried that her boss is going to fire her and replace her with a younger and cheaper employee. I was empathetic. I understand that she's upset. But when I told her about my medical issue she sounded unconcerned. I told her a little about it and she then turned the conversation around again to her job.

 

My mom had otosclerosis(I don't have that) and lost a lot of her hearing. I thought that she would be understanding. But she was only concerned about the job issue. She is retirement age and plans on retiring in 2 years. If she's fired she would get unemployment. Plus my step dad is working. So, it's not the money. I understand that she's upset. But isn't a health issue a little more important than a job you don't have to have?

 

I know I sound like a baby. It just hurt that my mom didn't seem to care. Thanks for listening to me whine.

[RegGuheert]

 

A few years later he thought it was back in the other ear but it was just a crystalized something-or-other putting pressure on a nerve. The dr. was able to put him through some movements that dislodged the crystal and he was fine.

FWIW, that sounds like Benign Paroxysmal Positional Vertigo (BPPV).

[Starr]

I recently had an MRI for hearing loss in my right ear. I didn't want to wait for the results from my doctor so I called medical records and got a copy of the report from the hospital. I live in a small town so it was easy to go pick up the report.

[Pippen]

I've had Meniere's for about 8 years and it's never progressed beyond chronic ringing, fullness, minor hearing loss in some frequencies, and dizziness (not bad enough to impact function). My ENT also did prednisone early on and I take a diuretic daily. I found that restricting salt doesn't make a lot of difference, but I don't eat a lot of processed or salty foods anyway. Caffiene and lack of sleep are my biggest triggers--I'm regretting my latest Diet Dr. Pepper binge in a big way. If I can control those factors I manage quite well.

 

Good luck with this--the info on the internet is scary and I was really alarmed at first but my doctor says it often runs its course.

[Rosie_0801]

:grouphug: I don't know much about Meniere's, but I do know about living in a hard of hearing culture. You might know all that sort of stuff already, if your mum has a hearing loss. If not, learning and making those adjustments will help life progress.

 

Rosie