New article published in "Hearing Health" on Menieres Disease

I too would like to thank you for this artilce. It has been quite a while since I have been here, but just when you think you are doing fine and you start to slack off here it comes again..... I need to get back to watching what I eat (no salt in my diet) and really just taking care of myself. Again, well said!

Ms. Tipsy

 

Super!
DC

 

Great article going to look into the magazine now

 

As newbie, on this group (not to MM) I thank you. I am still trying to deal with this disease. I am a natural pessimist, and that has made my life very difficult to actually live.

I just got finished going to my Shrink today, and we discussed the exact same thing as you put in your article.
Now If I could only follow the advice I have gotten and not have such a negative response to the side aspects and the full blown aspects of this rotten thing.

Positive, Thinking.........stop signs when the negative creeps into the brain. Get rid of the I can't's, and the But's...............

It is not easy. I will try.

Thanks for the article.

M

 

I love that article. My experience has been very similar. Well done

 

Good stuff! Hope I am able to keep a positive attitude like you. I'm usually a goer an doer and when one of these bouts hits, I'm afraid to go and do.

Last Saturday evening I was on my way to church when I got the dizzy, it may be bad, feeling and I turned around and came home. Laid down on the bed just as the vertigo hit. Scares me that sometime I may not get enough warning to get home or it may hit suddenly and I cause an accident and hurt someone.

Last bout went on off and on for 3 weeks. Is that usual? Help. How do y'all cope?

 

I myself, is new to this disease. Right now I don't drive or work because mine are so frequent. The way I cope is day by day. Hang in there its rough I now.

 

I have been RX'ed with MM since the 1980's. But had a really bad bout (worst ever) in 2004. Ever since then, I have not been able to do any normal things, except on the "clear" days.
I just went through another MRI, and an ENG. That doc told me after the tests were done that the horizontal canal is not working.
It has been destroyed either via the long tern of MM, or by the bout in 04. He also posits that that was not a MM attack, but that it might probably have been a viral hit. And that the canal was destroyed by the virus.
Either way, I have no usable horizontal canal, and he needs to do a few more tests to determine if the other canals were affected, and how much usage each of the three might have sustained.

Question: Has anyone else had this happen? And if so, what have you done? I don't understand very well about what this destruction could do. I have had an attack again this past Fri. Have been miserable with vertigo, and and such since then.

They want to do PT with me for this dysfunction.
BTW: according to the online records of my MRI, it was normal.

AS to how I get through all this: I don't very well. I just hope that things will calm down.

Miki

 

Anything that interferes with the inner ear, interferes with our balance system that is located within the inner ear.

 

Linda, I understand that, but if the semi-circular canals are lost, and this is causing my vertigo, why stick to the MM diet etc.?
Or further, what happens when it is lost. The balance system is totally wacked out?

Also, when the operate and "kill" the ear for MM's... I know you lose hearing, but I thought they did this to regain the persons balance.
Does the operation free up the liquids in the canals, and therefore the balance is better?

Which means I can't have any type of operation like this, it would not give me the balance back.

I have hearing loss, but in the upper range, and this is why the
ENT suspected that I did not have MM.

I was really dizzy yesterday and had what I thought was a Migraine, took Imitrex and it did not help the headache or the dizzies.
I would think that would preclude me from having MAV.

Darn headaches all the time.

 

Not sure. I only lose my balance during vertigo. Otherwise, only my hearing is permanently affected. I think it differs by person as we all have unique physiologies.

Since your canal(s) is damaged, that would explain what you describe. It is possible that PT could help. I'm not sure what your other options would be.

I know that those with balance issues, whether directly from the MM or surgery, usually require physical therapy to help compensate. Some surgeries cut the balance nerve, which directly affects balance and not always hearing. It depends if it's a VNS or Laby.

As for the MM diet, some need to adhere strictly and others don't. Again, I believe that has to do with our individual physiologies. My body retains a lot of water, so I really should watch my salt intake in general (MM or not).

I have classic MM, and I never have headaches associated with my symptoms. I don't know a lot about headaches and/or MAV, so I really can't answer that question. Burd/Terry could probably help you with that.

 

Linda,
Thanks,
I am just trying to gather info. I don't want to chance the trouble if I go off my diet.
But, when I used to feel good, I was able to eat almost anything, and it was ok.
Then eventually, I would start feeling off, (would be months) and I would go on the diet again and it helped.
But not after 04..............which would make sense if I was losing, or lost the canal/s.
ok, off to eat something and back to bed.
I am exhausted from seeing 3 doctors, in 3 days, having the MRI, and ENG, etc.
Plus the vertigo I am dealing with as a result of this attack or whatever.
I don't know what the ENT is going to tell me, but the dr. at the hearing and balance center that did the testing, is suggesting more tests (spinning chair etc), and PT.

So, will wait for a while, and then call him.

Miki

 

is anyone out there???? help how do you talk to anyone?

 

Hi Ray I have been having a bad time at the moment (a few weeks in fact) felt very down and alone as you try to explain to peaple what is wrong they don't seem to understand this awful complaint. I had a turn the other day (although I have a grommet fitted which normally work) and I was all over the place folk just looked at me and carried on walking completely ignoring me. Since then I have not been out, until today I read your article and thought it was bril you have made me feel so much better given me confidence in myself in just reading your article my self pity has gone I think to myself there are people out there that are worse off then me so thank you Ray for helping me to start getting my life back on track.

 

How many people are sick of Dr.s who can't make up minds?

I have gotten the results of my MRI and the ENG. My ENT never called me, so I called him. I spoke with his nurse.
The comments she said to me make me wonder if he remembers what he said before, or is just ad-libbing.
I was told that the MRI was normal (thank goodness for our IHC care system that posts the results on line, so the patient can view them)
I knew this a day after the MRI was taken.) Then I was told "he said, all the results are indicative of typical MM." Now this was the doctor who told me twice that he doubted I had MM because of my hearing tests which were hearing loss in the high end not the low end.
I asked her about the results that the ENG people told me. 1: they wanted to do more testing, because of the fact that one of my semi-circular canals was destroyed. And 2: to do PT, so I could learn to cope with re-training my eyes and body to the fact that my balance system is partially destroyed. Also the testing to find out if any other parts of the vestibular system was affected.
So, I asked the nurse to ask him if that had been reported to him.
Nurse called back and said, that he said: "there was nothing abnormal about loss in the semi-circular canals with MM, and that I didn't need to do any further testing, and that PT was just a waste."

So, I was a bit confused the hearing and balance people were really pretty strongly in favor of these things. I told the nurse that, and she said the dr. would give me the note for PT if I felt I needed it. But he wanted to meet with me and discuss other options and things we might try.
What the heck?
I am not going to let my hearing be compromised in any way. Nor do I want surgery, since it seems like it is a really unknown factor as to what results the patient has. Besides, the balance system is shot already, why do surgery that wouldn't even give me results?
Seems to me that almost all the operations for the MM system is to try to get back the balance system working, even to the expense of the hearing. And even those are about only 50% affective.

So, I will wait and find out what he is going to say. I am just weired that he sends me to the place to have the tests he wants to help diagnose me, yet disagrees with their prognosis for help.

SIGH. I hate this disease, and all other chronic diseases I have. I would like to get them under control so I can at least live out a decent rest of my life.

Miki ???

 

I am new to this site I just got diagnosed am still in the beginning phases of what the h*ll to do! I am a mother of 2 and going deaf is just not what i was expecting out of my life! hope this is helpful

 

Thanks for the sharing!! Peg

 

My first post !
I have had tinnitus for some 50+ years and just learned to live with it. Now I have just been diagnosed with Menieres. Still in the discovery stage and have only had 2 major spins. I consider my self lucky and am certain I will learn more as I follow this forum.It is just nice to know that there are others out there.

 

Hi I liked the artecle and I went through all theses things and my first time with MM was at work and lasted for about 5 hours and I was off work for about 9 months to redo my head and then I went back to work and was able to work for about 7 more years and now I have gotten so bad that I have had my right ear durm taken out and now I dont fall but Im dizzy all the time and we are still running test to see if there is something else wrong..... Do you know anyone else that has had the some thing done to they selfs and how long it took them to get better and did it ever go away...... lmarier

 

Thank you, I am still fairly young into meniere's and have had a hard time explaining what it is we deal with. I hope the best for everyone and thank you for starting this site. I hope to find new friends and help in dealing with my life. Thank you again..