Meniere's Disease

[Rube]

Maybe this is relevant to people with menieres but there is a dr who treats it with anti viral medication. Might be worth looking into. His name is dr. Gacek .
http://www.mdjunction.com/forums/me...support/3068476-acyclovir-treatments-dr-gacek

 

[SueR]

from what I have heard, when someone is mis-diagnosed with Meniere's, it's really a virus... and therefore an anti-viral would work.

That's the same doc that a friend of mine went to see, I'm pretty certain. she said she felt she was mis-dx'ed at MEEI, went to a doc in Worcester, and voila... gone.

She felt it was viral to begin with.

 

[MichaelM]

@Teri, thank you. You truly are a fighter spirit and i hope you can fight Meniere´s in the future. I have had this diagnosis for about 6 months now. I still somehow hope that there is a misunderstanding and soon something happens, which will cure everything for me. This is childish, i know. There will be no cure. I have to live like this for the rest of my life, for decades.

Yesterday i felt absolutely desperate. Tinnitus was, and still is, so loud i believe it cannot be any louder for anyone. i honestly believe now that this is the loudest T a human being can get. I feel sad, angry, tired.... this fatique is overwhelming.

I have had this loud T now for a week. I hope this is one of MD´s many phases and it will fade a bit in the near future like it has done many times this year before.

I absolute hate the medicine ( the whole science) for not taking T seriously and for that there is now way to measure how loud this noise in my head is in order to compare it with the folks´who say the classic "i hear it when it is silent"-phrases. There is tinnitus and then there is Tinnitus.
I am angry, i know. But the thing is I suffer here alone and there is no help available.

I admire your attitude, i do. I am not a positive person at the moment. I believe that without Tinnitus, and MD, i am a happy and positive man. This disease has taken me down. i am sorry for these negative feelings.

If there is anything positive i can think of... the other scourges MD can give have been relatively mild during the last weeks. No nausea, no ear pain, no bad aural pressure, no vertigo attacks... just this T that i utterly hate.

MD is so unpredictable. I know i had some good days early this month and now i feel like this again.

i wish all of you a very nice day.

 

[Teri]

@MichaelM

There is something I forgot to list....and that is --->Sleep! I know that MD sufferers are often fatigued...but that does not necessarily mean that we get a good night's sleep all the time. I find that when I am at a low and feeling anxious and depressed, the lack of sleep compounds the problem.

I know that your T is very difficult right now. I have never had severe T 24/7.....but I have had some very loud T that was so loud it moved to my head and over to my good right ear and hanged on for hours. It was very debilitating on the onset...I will never forget it! I thank the Lord that that is not the case now. But I do understand what it sounds and feels like. I really do. There are posters on this board that have severe T 24/7. They have days just like you are having. @billie48 as I mentioned suffered badly. He has very uplifting posts to read. His posts got me through some pretty bad days.

It is fine for you to vent and let out your frustrations here. The posters all totally get it. We would never judge you, honestly.

Know that I pray for you every day as well as all the others here who are suffering. I feel that my prayer and faith is also what has helped me get through some darkness.

All my best....k

 

[Teri]

@Rube, @SueR

Yes, I agree about the antiviral. I think it is pretty standard now for ENT's to prescribe not only the steriods, but an antiviral medication with the onset of hearing loss, T, and ear fullness. At least it was that way for me. I am not sure which medication did me in as they were given at the same time, but I got a bad case of chest congestion, sinus pressure, coughing...YUCK. The ENT thought it was probably the predisone steriod that did it.

At any rate, they ruled out the virus...as the symptoms did not go away.

 

[MichaelM]

@Teri , sleeping is good. I sleep a lot. Now that i dont work i take a little afternoon nap every now and then. what a luxury that is.

I have to admit that i am not a religious man. There seems to be many religious people here.... in a way i like it in Americans. I thank you for your prayers, too. Surely praying does no harm for anyone.

These are the days i wish i was fluent in English. would be fantastic to describe my feelings and situation in my native language for you all to understand. I guess i have to do it with my "broken English".

 

[SueR]

your English is great, MichaelM! I never would have guessed you don't feel fluent...

I can't wait to be fully moved into my apartment. My commute is going to be soooo much better, less taxing on me! It has been taking me 45-50 min. to get to work these days. I just went to my apartment for lunch and it is a 10 min. drive. yippee!

 

[Teri]

@MichaelM -- I, too, would have never guessed that you were not fluent in English. Your posts are well written in my opinion.

@Sue
It is awesome that you have shortened you commute. Will you be able to take a rest in the afternoons if you need to? Also, what did you decide about the dog?

 

[SueR]

the decision was made for me... no dogs allowed!

yes, I can go home to rest of needed. My plan is to go in early and take a 2 hour lunchbreak, then go back and finish my day. We'll see if that works for me. I want to spend that 2 hours at the gym on my good days, and sleeping on my bad days.

 

[Teri]

That is what I do too, Sue. I try to walk .5 to 1 mile a day. I also go to CURVES. It is a gym for ladies only. I am not sure if MA has any but I like it primarily for strength training.

What do you do for dizziness and balance? I had an ENT tell me there wasn't anything I could do for dizziness and/or balance issues related to Meneires. I don't know if I agree...I would think that anything is better than nothing.

 

[SueR]

doc told me the same thing.

yes, we have curves.

we have a corporate gym. It's really quiet late morning. If I get there around 10:30, that would be ideal!

 

[Teri]

I can understand why the dizziness cannot be dealt with with exercise, but I still want to believe, Sue, that Yoga, strength training must at some level help with balance.

 

[Teri]

Here are some good sites I found:

http://www.entad.org/endolymphatic-hydrops--menieres-disease.html

http://www.californiaearinstitute.com/ear-disorders-endolymphatic-hydrops-ear-institute-bay-area.php

 

[MichaelM]

Thank you ladies for your nice words.

ENT here also told there´s nothing to be done with dizziness and balance problems. Just to make some balance exercises since it might help.

I believe that if some is to find some cure for the MD it´s the Americans. Interesting links, @Teri.
Makes me want to travel to California. http://www.californiaearinstitute.com/ear-disorders-menieres-disease-ear-institute-bay-area.php

 

[cullenbohannon]

http://m.local10.com/health/new-dru...medication-to-treat-menieres-disease/27759832


Just saw this. Hopefully it works out

 

[Teri]

@Cullen

Thank you. This is a great story....it sure gives hope doesn't it?

 

[MichaelM]

It does give a little hope. hopefully one day there will be a cure.

 

[Teri]

@Michael, I was reading a post on a Meneires Yahoo group that there is some very good research showing great results in Colorado, USA. Keep the faith!

 

[SueR]

not having a great day. My allergies were giving me a problem yesterday with kicking up a lot of dust. Then last night I had some nuts (pistachios, almonds, and cashews). My throat was itchy the rest of the night, and throughout the night. I'm not sure if I am mildly allergic to the nuts or if it was the dust (although this was AFTER all my move stuff)

today, my throat is less itchy but I can still tell I have some allergic affects. and my hyperacusis and fullness is increased today.

regarding the dust - I've been moving stuff for 2 weeks now, and have had lots of sneezing, but then yesterday I went to a consignment shop and bought a TV stand. it has a smell to it (I didn't notice the smell when at the consigment shop!!) It smells like grandma's basement. Still, the itchy throat didn't start until the evening. It's not even IN my house. All that started hours after I got home, although I my sneezing yesterday was more than it had been for the past two weeks.

nuts: It could be the almonds. I usually will only eat a few almonds because they make my tongue a little sore. I know that sounds weird... so, it could be the nuts. I ate a lot of them while watcing football last night.

at any rate - my H and pressure is up today.

 

[Teri]

I am glad that you posted this Sue. I have had what I call a "perpetual scratch throat", popping ears, and a little ear pressure. I was blaming the throat on the diuretics I am taking and the ear pressure on the M. But now I am wondering if it is allergies. I have been sneezing but no sinus pressure or watery eyes. Hmmmm......

Maybe I should get tested for allergies.

 

[Teri]

Sue,
If the TV stand is stinky, take it back. They should not have it on the floor if it smells.

Or better yet, call them and insist that they come and get it after they hand you the full refund!

 

[SueR]

It was a consignment shop. all sales final. That's okay. if the smell doesn't leave, I'll ditch it.

 

[Teri]

I don't know, Sue. There must be some accountability for them.

Sue have you ever figured out a medicine that works for ear pressure that does not make your T scream?

I am traveling in a few days and I sure hope my ear and throat don't get worse.

 

[Magpie]

A link to a wonderful organisation who helped me enormously in the beginning and when I needed it most:

http://www.menieres.org.au/

 

[Teri]

Here is another link that I found with some very good information:

http://www.ent.uci.edu/clinical-specialties/ear-surgery/menieres-disease

 

[SueR]

so, today I found out I won a prize from my conference last week. Bose MEI2i audio headphones. I played a bit of opera music, volume set to barely audible, and my hyperacusis is totally pissed off now. not a total collapse, but seriously annoyed. It's so weird that I have a hard time tolerating anything directly into my ear, but I can be in a noisy casino.

I guess I will have to use just one side.

 

[Teri]

Sue,

Do you think you H will dissipate eventually? I have read many posts here from H sufferers who no longer suffer.

 

[SueR]

My H is managed quite well (IMO), and I only have flare-ups. I was just in a casino in Vegas and was fine. but can't have opera music on 'barely audible' directly in my ear? ugh...

yes, I will get back down again. I will report back tomorrow, but I bet I will be fine by then.

 

[Teri]

Sue,

I have some Bose noise-reduction headphones. I love them when I am traveling in a car. The noise is louder than I like and having that blocked out while I listen to my i-pod is great!

 

[SueR]

So you have no problem listening to your iPod through the headphones?