Meniere's disease?

californiansun

Hi all,

I was wondering if any of you have Meniere's disease, and if so, has your Meniere's disease gotten better now that you have started a healthy life style?

The symptoms had me bedridden for almost 6 months, and now I'm noticing that these symptoms have gotten better now that I am starting my new life style!

I often stress about them coming back, I just want to know that I am not alone!

Thanks!

Pebble321

I don't have Meniere's but have had some tinnitus and vertigo in the past that really bothered me, I can't imagine how much worse full blown Meniere's would be.
I did a bit of reading then and found some info that suggested that a low salt diet can help. If you are eating more fresh unprocessed stuff this might explain the improvement.
Or it might be some other mechinisam - whatever it is, I'm very glad to hear that you are doing better!

RonneyKay

I have/had meniere's disease. Low sodium helped for a while, but I finally had to have a left labrynthectomy. I now have my bone anchored hearing aide.

I noticed when I am active I can still sometimes lose my balance easily, but this is suppose to get better (i had my laby in Feb, so not even a year yet)

This disease sucks cuz no one understands unless they have it, I understand. I understand sleeping on the cold bathroom floor just wanting the spinning to stop.

But anyhow, I just have to make sure I get enough protein and that seems to help.

californiansun

I'm afraid I am going to go deaf! It scares the living **** out of me!! I start crying when I think about it. I was told I might have a brain tumor, but luckily that came out negative.

I went to the ear doctor, and my hearing is perfect he said. I want to go to a check up and see if it's gotten any worse. I don't believe it has, but you never know.

I have extremely bad TMJ, and I know that could have an affect on it, too. I'm getting it fixed so I hope it stops.

shakybabe

I don't have that, but I think it affects balance cos it causes vertigo and sickness with movement due to problems with middle or inner ear? .. not sure if I got that right?

I have Ataxia which causes balance and co-ordination problems from damage to the cerebellum and Basal Ganglia (which is deep in middle of brain and controls voluntary movement).

I got a sensory balance belt shipped from the US and that has helped me to be able to sit/stand steady enough to do some exercises and build up what I can do, once I could exercise for long enough to strengthen my core I can do some exercises without it now.

californiansun

I don't have that, but I think it affects balance cos it causes vertigo and sickness with movement due to problems with middle or inner ear? .. not sure if I got that right?

I have Ataxia which causes balance and co-ordination problems from damage to the cerebellum and Basal Ganglia (which is deep in middle of brain and controls voluntary movement).

I got a sensory balance belt shipped from the US and that has helped me to be able to sit/stand steady enough to do some exercises and build up what I can do, once I could exercise for long enough to strengthen my core I can do some exercises without it now.

Yes, you got that right! It's also happens when calcium deposits form in your ear, which I guess would cause the vertigo!

I'm glad you are doing much better!!

_VoV

I had sudden hearing loss in my late 20's. Based on the hearing testing, the doc told me I had Meniere's Disease since the loss was in the low to mid frequency range. I had horrible tinnitus, but never had any vertigo. I was told the disease was cochlear, not vestibular. My hearing improved almost to the point of being normal, but it took a couple of years. I had a 20+ year reprieve with pretty much no symptoms, but one day I was using a backpack leaf blower without hearing protection, and the hearing loss came back suddenly again, only this time only on one side and affecting a broader range of frequencies, I think.

I try to eat healthfully, and keep my sodium intake to under 1500 mgs whenever possible, but so far, no improvement. It's been 7 years since the second incident with the leaf blower.

californiansun

I had sudden hearing loss in my late 20's. Based on the hearing testing, the doc told me I had Meniere's Disease since the loss was in the low to mid frequency range. I had horrible tinnitus, but never had any vertigo. I was told the disease was cochlear, not vestibular. My hearing improved almost to the point of being normal, but it took a couple of years. I had a 20+ year reprieve with pretty much no symptoms, but one day I was using a backpack leaf blower without hearing protection, and the hearing loss came back suddenly again, only this time only on one side and affecting a broader range of frequencies, I think.

I try to eat healthfully, and keep my sodium intake to under 1500 mgs whenever possible, but so far, no improvement. It's been 7 years since the second incident with the leaf blower.

I really need to try to keep my sodium down. I really need to get a new hearing test done, I think it's out of paranoia that I'm like this lol. The Dr. said my hearing was perfect, so i have no idea. It's really frustrating.

_VoV

I totally understand your fear. When the sudden hearing loss occurred in my 20's, I had just gotten my Master's degree and was promoted into a position which required me to do a lot of phone conferencing. For a couple of months, my assistant had to be my 'interpretator' and that proved to be really awkward. I thought I was going to be unemployable. But, gradually, my hearing improved in one ear and then the other. I was so thankful! But, let me tell you: the fear for what my life might become was gripping. And, because hearing is so subjective, and people act more angry at your inability to hear them than sympathetic and helpful--I got very little support at work or home. It was more: buck up and deal with it!

ronde

I'm afraid I am going to go deaf! It scares the living **** out of me!! I start crying when I think about it. I was told I might have a brain tumor, but luckily that came out negative.

I went to the ear doctor, and my hearing is perfect he said. I want to go to a check up and see if it's gotten any worse. I don't believe it has, but you never know.

I have extremely bad TMJ, and I know that could have an affect on it, too. I'm getting it fixed so I hope it stops.

I was diagnosed with Meniere's disease 30 years ago at age 20 during the process of being treated for TMJ. I suffered horrible vertigo spells and the full feeling in my ear and the ringing in my ear. After the two year two surgury process of TMJ treatment (reconstruction surgury to my jaw and cartlidge replacement) the dizzy spells stopped, but the ringing in my ear and loss of hearing didn't stop. I too was so afraid and had bouts of depression worrying about loosing my hearing. Fortunately it didn't happen over night and your body/mind starts to adjust to it.

I was told and have read that the chance of getting it in both ears was a very slim chance. I wasn't successful at maintaining the low sodium diet which many say helped. Also right before "that" time of the month the ringing and fullness in my ear are at its worst. I think every person has different levels of hearing loss. I've never had surgury or any earing aides. The best thing for you're body is to try not to stress about what could happen in the future as I've also read stress can cause your symptoms to heighten.

I have noticed in the last couple of weeks the fullness in my ear has gotten worse than normal and the ringing in my ear is horrible, I am wondering if my workout routine has affected this as I'm doing more aerobics and going from floor positions and up to my feet quickly. I by chance found this thread searching if there were others here that have noticed any change in their disease since changing their diet/excercise routine. Good luck to you with your TMJ and try not to worry and stress about your hearing loss as hard as it is not to.

neohdiver

I found this tool when the world started spinning a couple of days ago, and my doctor put me on a 1000 - 1500 mg sodium/day diet. She suspects endolymphatic hydrops (which includes Meniere's disease).

I've had high frequency hearing loss and tinnitus in one ear since 2007-ish (atypical frequency range for Meniere's - but then medically I usually am atypical). She had been evaluating me for acoustic neuroma (a tumor), but had stopped aggressive testing since my hearing has been unchanged since 2007 and I had no other symptoms. I had my first bout with vertigo in July, a second in more severe one in August, then it started again 3 days ago. Fortunately the hearing loss is only in the range of electronic alarm clocks and doesn't interfere with anything else, and I only notice the tinnitus when things are quiet or I think about it.

So here I am...

For now the symptoms are not severe enough to motivate me to be that obsessive about sodium long term, but for at least a month I'll be tracking it.

MCproptart

As a point of reference, I had surgery to have an acoustic neuroma removed a year ago this week. It was 1.6x1.9 at that time. I had lost about half the hearing in my left ear. Also, right about the time it was discovered I had (a) quit my blood pressure medicine on my own and (b) started eating salty snacks at work for stress relief. After the surgery, the tumor is gone and so is the hearing in that ear. However, the staticy/whooshy tinnitus remains. I think doc said it's like the brain keeps trying to tune in for a signal. It is louder/stronger when I have had salty foods or my BP is up. I'm not sure if this helps or not, but I thought I'd share. I try to keep my sodium under the 2500 on here, but have days I get up to 3000. Yesterday I had a Jimmy John's breakfast bowl and noticed it right away, but other salty foods haven't been so obvious about it.

Hope this helps!

mrobins3228

Just found this thread. I have had over 30 vertigo attacks in the past year and was told it was BPPV, but met with a specialist at a university based dizziness clinic today who told me it's Meniere's. He gave me a steroid injection in my ear, which is supposed to reduce inflammation in the ear canal and recommend sodium reduction. He didn't say how many milligrams but I've read that it should be 1500-2000 per day. I set my goal at 2000 a day to be realistic. I'm really hoping this helps! The person who posted above that no one understands what it's like unless they have been through it is 100% right! I'm a busy attorney with my own law practice and it's hard to explain to clients why I have to keep changing their appointments, when I wake up with vertigo, or get it out of nowhere, just sitting at my desk. It's been exhausting and I'm fully commited to the work of reducing my sodium intake. Hoping to find some cooking tips here, as well as eating-out tips too. Best wishes to all ~~ Margaret