Menieres

lilybear said:
Alright... joining the thread now as I got my diagnosis today. My doctor got me on betaserc and triamterene... Any known side effects? Anything I should watch for?
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I use triamterene, and the only side effect I have is peeing a lot. That is why they recommend taking it when you first get up. Otherwise, I have not noticed anything else.
 
saywhatkid said:
I use triamterene, and the only side effect I have is peeing a lot. That is why they recommend taking it when you first get up. Otherwise, I have not noticed anything else.
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Same thing here although I don't take it anymore.

One positive side effect .... If you are pretty fit, it can make you really cut.
 
I also take triamterene, but when I take it if feels like it makes my hearing worse and the ringing louder. I stop taking it and slowly the ringing goes down and I can hear a little better. Does this happen to anyone else? LoL, maybe I'm imaging it.
 
TiaMarie said:
I also take triamterene, but when I take it if feels like it makes my hearing worse and the ringing louder. I stop taking it and slowly the ringing goes down and I can hear a little better. Does this happen to anyone else? LoL, maybe I'm imaging it.
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I am not sure why it would do that since its a water pill, which form of it are you taking? The name of it? Since Menieres and a lot of the symptoms are caused by the fluid build up triamterene should lesson the problem. If I dont take my pills I can notice a HUGE difference. Like saywhatkid, I am going to the bathroom all day because the water needs OUT lol
 
I've gone thought rough bouts of it and I credit a healthy lifestyle for stemming the tide. I eat healthy, don't cook with non-stick pans and exercise about 4 - 5 times a week. I haven't gotten full blown dizziness in years. I think this is mostly due to my diet which cuts out processed food (for the most part).

P.S. No drugs, I don't even take asprin unless I'm about to die.
 
VacationGuy234 said:
I've gone thought rough bouts of it and I credit a healthy lifestyle for stemming the tide. I eat healthy, don't cook with non-stick pans and exercise about 4 - 5 times a week. I haven't gotten full blown dizziness in years. I think this is mostly due to my diet which cuts out processed food (for the most part).

P.S. No drugs, I don't even take asprin unless I'm about to die.
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Im glad that works for you but what sucks is Menieres is different for everyone. Even having changed my diet and exercise and everything under the sun, I still need the meds. I still get dizzy spins here and there and I get an attack every once in awhile that puts me down for days at a time.

This is why some people experience hearing loss, some dont, some go full deaf and some dont. Its so different for everyone.

Im happy when I can go a few days without spins and feeling nautious when I wake up. And I mean I made a life style change when it came to diet, exercise and my daily stuff, all for the better. But Vacationguy I am very happy that you dont have to deal with that stuff, anyone that does I feel for =/
 
candybrowneyes said:
Im glad that works for you but what sucks is Menieres is different for everyone. Even having changed my diet and exercise and everything under the sun, I still need the meds. I still get dizzy spins here and there and I get an attack every once in awhile that puts me down for days at a time.

This is why some people experience hearing loss, some dont, some go full deaf and some dont. Its so different for everyone.

Im happy when I can go a few days without spins and feeling nautious when I wake up. And I mean I made a life style change when it came to diet, exercise and my daily stuff, all for the better. But Vacationguy I am very happy that you dont have to deal with that stuff, anyone that does I feel for =/
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This! And even worse is the fact that it differs from week to week. In the past I have gone 3-4 months without symptoms...then wham! I have had meds or diet work for a while (or so it seems) and then stop working.
 
showing up to the meniere's party

well I'm a little late but showing up the Meniere's disease party here.
*waves dizzy flag*

I'm probably the "veteran" here as I'm a 30-year patient. I've had lots of different treatments, many of which helped for the stage I was at. I just recently had the shunt surgery on my second side and I'm having a positive result.

I've been lucky enough for the last 10 years to be seeing a very cutting edge doctor here in the Portland Oregon area, Harold Kim. We have tried lots of different treatments but I have proven to be one of his harder-core cases. If I can share any of my experiences and be helpful to this little gathering I'd be happy to do so. But my story hasn't been a real good one so I won't give the details until you ask.

I was diagnosed in my 20s and had very sporatic but violent vertigo/tinnitus problems at first, which later developed into deafness on the left side. I was in remission for quite a while and then after they implanted a BAHA device on my deaf side to restore my two-sided hearing, two years later my disease went bilateral. I've been suffering a slow degeneration of the hearing on the left side now and have very little usable hearing left at this point and very poor balance.
I've also developed other vertigo problems (positional vertigo and migraine associated vertigo and clinical depression), but the recent shunt surgery has really helped with this.
I am on disability now as I can't drive and I can't use a phone, although I've just ordered a special phone.
I also just ordered a special hearing aide and hope that will improve my quality of life.

With Menieres, that is what it is all about, keeping the quality of your life up. It can really SUCK.
And those doctors suggesting you learn ASL, they are RIGHT. I decided I would "fight" losing my hearing and did not encourage anyone to learn ASL and did not learn it myself while I could hear and more easily attend classes. I do wish I had a different attitude about it long ago. I had resolved to never go deaf and that was the wrong thing to resolve. I should have resolved to live my life gracefully come what may.
I do have family members with this disease and they never had even a tenth of the issues I have had, so it does seem that even within the same family it can hit you differently.
May all of you have a light case and have long remissions!
 
savingdogs said:
well I'm a little late but showing up the Meniere's disease party here.
*waves dizzy flag*

I'm probably the "veteran" here as I'm a 30-year patient. I've had lots of different treatments, many of which helped for the stage I was at. I just recently had the shunt surgery on my second side and I'm having a positive result.

I've been lucky enough for the last 10 years to be seeing a very cutting edge doctor here in the Portland Oregon area, Harold Kim. We have tried lots of different treatments but I have proven to be one of his harder-core cases. If I can share any of my experiences and be helpful to this little gathering I'd be happy to do so. But my story hasn't been a real good one so I won't give the details until you ask.

I was diagnosed in my 20s and had very sporatic but violent vertigo/tinnitus problems at first, which later developed into deafness on the left side. I was in remission for quite a while and then after they implanted a BAHA device on my deaf side to restore my two-sided hearing, two years later my disease went bilateral. I've been suffering a slow degeneration of the hearing on the left side now and have very little usable hearing left at this point and very poor balance.
I've also developed other vertigo problems (positional vertigo and migraine associated vertigo and clinical depression), but the recent shunt surgery has really helped with this.
I am on disability now as I can't drive and I can't use a phone, although I've just ordered a special phone.
I also just ordered a special hearing aide and hope that will improve my quality of life.

With Menieres, that is what it is all about, keeping the quality of your life up. It can really SUCK.
And those doctors suggesting you learn ASL, they are RIGHT. I decided I would "fight" losing my hearing and did not encourage anyone to learn ASL and did not learn it myself while I could hear and more easily attend classes. I do wish I had a different attitude about it long ago. I had resolved to never go deaf and that was the wrong thing to resolve. I should have resolved to live my life gracefully come what may.
I do have family members with this disease and they never had even a tenth of the issues I have had, so it does seem that even within the same family it can hit you differently.
May all of you have a light case and have long remissions!
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Im so sorry that you have gone through so much. Your attacks have seemed to be close to what mine are at times. So unpredictable and awful. I hope that you can find peace within your life..... I was depressed when I first was diagnosed and it wasnt fun, but then I came here and met people who knew what it was like to be me.... and I learned to just cope and deal with it.. Some days are very hard. I havent had a serious attack in about a month which is very good for me... I wish you well and hope that so much light shines on you :)
 
My menieres is getting worse! In the last 24 hours I've had 3 attacks and the longest was last night with SIX HOURS of vertigo! Nothing helped. Wish me luck on a full nights rest and dizzy free days. And same to everyone else in my same boat.
 
I'm joining the thread rather late, but oh well :)

I also have bilateral Meniere's disease. Oh, joy :| I've had it for several years. It started in my right ear, and it has now spread to my left ear, too.

I have a problem. My mother does not understand what Meniere's is. She thinks that it's like an ear infection or something. She keeps expecting it to go away - but it's not going to. I'm not going to just stop being deaf! :lol: I'm also deaf for other reasons; Meniere's is only one cause for me. But my mother doesn't understand this. I've tried EVERYTHING to try to explain to her, but nothing works. I've about to give up... Any ideas on how I can help her to understand what I'm going through? :ty:
 
VacationGuy234 said:
Do you drink coffee or alchohol? And, what about exercise?

I don't drink coffee, but I do drink alcohol. I also exercise 5 times a week.
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I have to change this: I now drink coffee again. I use a Kurig coffee maker and this is what I've found. I can't drink flavored coffee as it will make me dizzy, but I can drink regular coffee. Currently, I drink Green Mountain Breakfast Blend, Milstone Arabian mild and Dunkin Doughnut original K-cups. I also only use Market Basket Fat free Half and Half(stuff should be illegal as it tastes good)
 
The following from Consumers Reports on Health June 2012 page 6 One minute-consult

"Meniere's disease is a condition in which the inner ear swells up intermittently. The attacks can cause totally incapacitating vertigo along with a feeling of pressure, ringing in the ear. Each attack does a little more damage to hearing and balance.
The initial treatment is a low-sodium diet and a diuretic, blood-pressure pill. If that doesn't work.there are additional treatments ending ultimately, with surgery.
Sudden vertigo can also be a sign of an impending brainstem stroke, usually accomplished
by slurred speech, double vision and clumsiness of the extremities.

Terry Fife MD director, balance disorders and otoneurology, Barrow Neurological Institute, Phoenix

Aside: I don't have vertigo or Meniere disease: so far.
 
For the past week, I've been having light signs of dizziness, but no full blown eye movement yet. I think I may have an ear infection instead of an allergic reaction. I did eat foods I don't usually eat last week like Cheese its and I've switched to Sam Adams light beer. I'm not sure if these are contribution, but I'm going to get my diet back in order. The only other thing I've been consuming/using regularly is Listerine Mouth Wash and that might be having an effect on it.
 
Wow, I've been missing for a while. I've been having a ruff time. When I get vertigo its long. ick! I hope everyone is dizzy free!
 
i have menieres it horrible,i looked for self help and forums with other sufferers for this with no luck.
i can get attack even when lying down it awful and quite frightening when it first happened i got use to it now.it took me sometime to work out which ear was effected but i know now i think...i take serc tabs but they dont really work other than take nusea away but offten i dont feel sick.if someone ask me touch my nose i would not be able to as everything is just so muddled.when had first attack i was scared stiff get another when crossing the road or with the kids,and can not say when i get attack could be months apart or days,no hard fast rule when it happens
 
It doesn't give you any working at all. I was in Vegas at MGM Grand and fell to the floor with an attack. Really imbarissing people that I was drinking
 
TiaMarie said:
It doesn't give you any working at all. I was in Vegas at MGM Grand and fell to the floor with an attack. Really imbarissing people that I was drinking
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Do you get drop attacks or did you just get so dizzy that you fell? I live in fear that I'll start getting drop attacks. I can usually handle being dizzy but drop attacks out of no where would drive me mad!
 
WillKnit said:
Do you get drop attacks or did you just get so dizzy that you fell? I live in fear that I'll start getting drop attacks. I can usually handle being dizzy but drop attacks out of no where would drive me mad!
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I started having drop attacks when my left ear was "burning out" They are pretty scary and everyone stares! The last drop attack I had was in 2004. I remember that because it was my birthday. Than I got Meniere's in my right ear, so I'm starting all over again.

There was one day many years ago when I was in the 7th grade that I got dizzy so bad I had to crawl home from the bus stop. Than I was home schooled for a couple years because it was a "safety hazard" to have me in school.
 
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