Here for My Mother... Severe Meniere's Issues

[fredasgirl]

I'm here for my mother. She is 80 years old and suffers terribly from meniere's. She is now housebound with bout after bout. Cannot eat, is falling, cant' sleep, the room spins even when lying down.

She's been on various and sundry drugs, I'm going to try to get my sisters to join as they are nearer and take her to the doctor more often. Recently she had an injection into her ear that was supposed to help but made it worse.

Labryinthectomy is now being discussed. Has anyone had this? Did it help?

Is there a center within the US that is "the" place to go for the most cutting edge information and help?

It is hard to know she is suffering so, with no hope of help. She's tried diet, pills, injections. Nothing is helping. If you have any ideas on what may help we truly covet your suggestions.

~KM

 

[AnxiousJon]

@glynis
She'll respond; see what she has to say.

 

[attheedgeofscience]

It is hard to know she is suffering so, with no hope of help. She's tried diet, pills, injections. Nothing is helping. If you have any ideas on what may help we truly covet your suggestions.

I know the otology pharma called Otonomy Inc has developed a compound (OTO-104) which is currently in phase III. Probably your mother would be non-eligible due to her age. I will attach the latest business presentation from Otonomy (from January this year) - it will contain information on OTO-104.

In addition, I can attach a document which tracks the 15 otology/nuero-otology pharmas currently in the process of developing medicines targeting the inner ear. It's been a while since I checked it - it could be one of them (besides Otonomy) is also developing a compound against MD (an age-limit would still apply for clinical trials, probably).

Cold-laser therapy (LLLT) is known to be helpful with MD. This requires clinic grade therapy, however. The best doctor on this is Dr. Wilden. He has, however, relocated his clinic from Germany to the warmer islands off the coast of Spain. He therefore does not have the same audiology facilities that are critical for monitoring the progress (or at least that is my opinion).

Labryinthectomy is now being discussed. Has anyone had this? Did it help?

I have no opinion. There is Doctor's Corner (which may help - not sure for that topic, however).

If everything fails, I can provide the e-mail of the managing director of Otonomy (in a private message). He would have an opinion on what options are out there (for sure).

 

[glynis]

@fredasgirl ,
Aww bless her.
Menieres is hard to go through when its so bad.
I know shes had medication but ask her if shes had two meds together.
Betahistine and Proclorperazine work great together and really help me....
A low salt diet too.
You can also get sickness wrist bands that put pressure on a spot on your wrist that can help.

Did she have steroid injections in her ear or gentamicin injections ?....lots of love glynis

I have had Menieres 11 years.

Im happy talk on the phone with you or your Mother on the phone if in the uk as have unlimited minutes on my mobile,just send me a pm.. xxx