Meniere's Disease

[Ricky81]

http://www.mmamania.com/2013/4/18/4...ermany-stem-cell-treatment-cure-ufc-president

Dana White Meniere's Disease: A-Rod, German stem cell treatment cure UFC President '100 percent'

 

[MichaelM]

Interesting video. I have to talk about surgery options when i see the doctor next time in October.

I saw psychiatrist yesterday. I start taking mirtazapine. This is a 2-3 month test, mostly for anxiety and lack of sleep. Let´s see what it brings. The idea is to trick my brains a bit so that they dont focus so much on my ear problems. If this brings even a small amount of help to tinnitus and pressure it is worth it. I am afraid of serious side-effects...

 

[MichaelM]

In case someone is interested to know what a classical Meniere´s Sufferer´s audiogram looks like: voila! the photo of that of Yours truly.
the "thing" being in this one: the more hearing i lose the more louder the T i get!
So there is a chance that, on one sunny day, ALL i here with my right ear is this overwhelming tinnitus.

 

[Teri]

Michael,

Doesn't your hearing fluctuate? Mine is up and down.

 

[Ken219]

http://www.mmamania.com/2013/4/18/4...ermany-stem-cell-treatment-cure-ufc-president

Dana White Meniere's Disease: A-Rod, German stem cell treatment cure UFC President '100 percent'

I don't get it. That report was over a year ago. What is up now?

 

[MichaelM]

@Teri , no not really... maybe a little fluctuating but it seems my hearing only gets worse over time. If i understood correctly the doc's words "it is Meniere's destroying your inner ear".

What fluctuates with me is the T and the feeling of inner ear pressure.

I realized yesterday: i am losing my hearing of my right ear. T will stay. It cannot be masked anymore since idont hear too well. No matter how loud a sound all i hear is my tinnitus.

 

[Teri]

Michael,

You are going to have to take some action regarding your T. Have you tried CBT or Mindfullness? I am working with that right now and it seems to help me with anxiety and depression. I have no idea what my future is going to hold....so I am trying to be proactive now.....trying to get a good toolbox in place in the event that a "storm" hits.

At what age were you diagnosed with Meniere's? Are you able to drive? Is there some possibility for you to get some good support with therapy?

 

[MichaelM]

@Teri, i am taking actions... slowly but steady. Got diagnosed last winter, age of 36. As i´ve mentioned it took some 1-2 years or to finally get the diagnose since i "needed" to get those 2 violent attacks... which brings us back to Certain Meniere.

I have seen a few different specialists. This is, i repeat myself i know, a psychological battlefield. Started those meds (mirtazapin) and i am waiting to see a new psychiatrist.

Yes i can drive. The balance is not so big an issue in my case.
Dont know if any support or therapy can make any difference. the noise will stay in my head as long as i live.

I have to admit i have seen better days. I am not saying my tinnitus is worse than anyone else´s but this is quite something now. People here and there talk about masking T, doesnt work for me anymore. I dont hear the masker....ha ha. ALL i will soon be hearing with my right ear is T if my hearing goes worse than this.

Now i am wondering if there is is someone else here with hearing loss and T.
It´s bizarre. One loses hearing and start to hear a sound so loud it is unimaginable. I went to a stadium concert on Friday (wearing earplugs): i could hear my T for every single second there no matter how loud the music. That was a devastating finding since i havent seen any gigs for years now. The loneliness with this problem is today giving me great agony. If my loved ones only knew what and how i feel.... they dont. they can not.

 

[Teri]

Michael my heart goes out to you. I am sorry that you are suffering so! Don't give up....there are some folks here with debilitating T as well...hopefully they can offer you some suggestions as well. My hearing is up for the moment, and the T is down. But we both know that Meneires can attack and down the hearing goes. My T also goes up when my hearing goes down. I have had some very loud T in my left ear with little hearing as well, and you are correct, it cannot be masked! My hearing is still bouncing up and down...not sure if a time will come when it drops and stays down.

Hang in there!

 

[MichaelM]

Thank you @Teri .
I have come to an understanding that MD will finally destroy one´s hearing, or most of it, no matter what. The progress can be quick or take a long time. Again, nobody knows nothing for sure.

Any good threads here about debilitating tinnitus? I have a feeling i am not gonna show up in Success stories very soon.

 

[SueR]

The other day I had a very loud "fleeting T" that took me by surprise, I covered my ears (which, of course, was totally unhelpful!) and I'm wondering if the next one will be permanent. I know there's no way of knowing, which doesn't help with the wondering. My T in my non-H ear is getting louder (although still relatively quiet, except for that moment... that was incredibly loud)

I'm hoping that it sorts out once my stress level goes down. I need a break from life... just for a bit. It will... eventually, and I just need to endure. I just hope my ears can withstand this time I'm going through.

 

[MichaelM]

During the first half of this year i use to have what i think is something similar.... fleeting T. very, very loud high pitch tone that lasted everything between 5 sec to 30 min. havent had them for a month or two now. they use to come maybe 1-2 times in a month. i didnt give them enough meaning to write them down to my calendar.

I tend to think it was my hearing dying not tinnitus getting stronger itself... as the hearing fades away in comes the T - louder than ever.

 

[SueR]

my tones are like 200 Hz... it's bizarre.

 

[Teri]

How do you measure your tones? I get loud T but I don't know how to measure the loudness. I do know that at it's peak I can't mask it. I started this journey with some loud that moved to my head and over to the other ear. Now, thankfully, it has calmed down for a good couple of weeks.

 

[SueR]

There's a website (auduinotch??) where you can match it up.

 

[SueR]

Sorry... On my iPhone. Audionotch.

 

[MichaelM]

http://www.audionotch.com/app/tune/

what are your audiograms showing?

 

[Teri]

Thanks for the link Sue and Michael.

These are three of my Audiograms: May, June, July As you can see, there are great fluctuations. The last time I was in, the audiologist was scratching his head saying he did not know what to think about my hearing! Not really what I wanted to hear as a patient always wants answers.

 

[Teri]

 

[Teri]

 

[Marlene]

Teri,question,were you given your audiograms ,or did you ask for them,? I've had 3 done,only saw them on a monitor.was never offered them .Maybe UK it's not something that's offered,but be interested to see my 3 ,to see if the 3 vary over time span.

 

[SueR]

I didn't get mine either. The first one, the audiologist sat with me and reviewed them, but I don't know if i got a copy. If I did, I have it in my folder. But, when I went to MEEI, I did not get a copy. I didn't ask, but I'm sure if I did ask, they'd give me a copy. On that day of the hearing test, I went through a whole bunch of testing, so just getting through it all was challenging enough! I will ask when I have my followup appt.

 

[Teri]

I am thinking Sue, legally in the US, they have to give you medical records....correct?

Also, Sue, I hope that soon I see the "stressed" mood bar change on your profile!

 

[Marlene]

Hi Sue,so you didn't get yours either,when I see graphs put up wondered how people got them.Not seen my dr since early FEB,but due for a BP check up. I'm going to ask about them,she's pretty good dr ,sure she'd get hold of them,going to ask about getting my Eustachian tubes looked at,think that could be my balance problem.
Hope life's getting better for you and your lad ?sorted house as yet,one you went for close to your job ?
Your be more relaxed when all done and dusted.

 

[SueR]

yes, they have to provide them (not necessarily free of charge, btw!) I never asked. I went over the results then and there but didn't bring home with me. I wonder, though, if I can find them on Patient Gateway (online portal w/docs).

I'm in no hurry. I have far too many things on my plate right now to bother.

regarding my stress - I finally got word today that I got the apartment I applied for. One step closer anyway.

 

[MichaelM]

Funny... this day has been perhaps the best for months. Meniere´s is something else! All the inner ear pressure gone, just a little feeling of it still there. Loud T... i dont mind, not today. Tomorrow the battle continues.
hope you fellow Meniereans are doing great!

 

[Teri]

Michael,
I am thrilled you are doing better! I was getting worried for you. You truly deserve some better days. Hopefully you will get better habituated to the louder T.

 

[MichaelM]

@Teri, the T might be now the loudest ever. It is so loud i have actually laughed about it... pulsatile tinnitus started on the 7th of this month. Some minutes ago i was trying to observe how many sounds i have in my ear: perhaps 4 or 5. I feel i can hear my blood running, or something. Pulsatile t is exactly in the rhythm of my heartbeat
But..... no ear pain for some day or two. This is amazing since it lasted for weeks this time. It can come and go, i know it, but when it is on, i forget all the "good" days with this disease.

 

[Teri]

Yes, the full, hurting ear is not fun at all! We just need to keep faith and hope that a cure will be discovered or a good medicine to treat the symptoms at the very least.

 

[Teri]

Here is a good site for low salt recipes:

http://www.mrsdash.com/recipes