Comments on my life and meniere's disease: Does Meniere’s disease lead to other health proble...

menieres leads to many other illnesses in my eyes,...

2012-01-29T14:36:38.248-08:00

menieres leads to many other illnesses in my eyes, as do many other health problems.
it is the catalyst for a chain reaction of other problems, as the lifestyle usually associated with menieres is not always the healthest way to live ones life (for me the lack of activity is a real big one with menieres. limited work sport etc), also the stress being dizzy is obviously sending negative emotions through ur body which in turn manifest to other negative things.
the diet side of things, is probably funnilly enough the only good thing with menieres.
regards
ali

Not sure if MD is caused by or causes other body p...

2012-01-28T19:56:19.535-08:00

Not sure if MD is caused by or causes other body problems. I'm pretty damn healthy other than my MD and it's the only thing holding me back. It's been extremely tough to deal with.
Mine started out as dizziness one morning and had to call in sick. That was about 12 years ago. Now it's progressed to a daily unsteadiness and occasional dizzy spells. I'm having to take a diuretic daily and have finally found OHSU here in Portland that specializes in the head and inner ear.
Whatever you do, do not go to a regular ENT. You have to find a specialist that has dealt with MD specifically. I've seen a few ENTs and I got responses from "sorry we can't help you" to "here are some drugs, Have a nice day". My last ENT was nearly pointless but finally she recommended OHSU. I'd been seeing her for 4 years or more.
We all have different symptoms. I've been on a very low salt diet which has helped but still isn't a fix. Keep up the hope. Keep trying different things that work for you. Low salt, low sugar, diuretics, whatever it takes.

Since first having the dreadful vertigo attacks la...

2012-01-25T01:26:08.599-08:00

Since first having the dreadful vertigo attacks last summer, I thought I was worse off than lots of people whose messages I read. Now, however after starting 2x8mg of betahisting hydrochloride (or do-hydrochloride) tabs per day, thanks to UK's National health Service, starting 2 September, I have had no further trouble. OK, I have industrial strength tinnitus and I am deaf in one ear but I can cope with that. Am I especially lucky, are tablets working, am I suddenly and so soon in remission? Don't care, I can get on with life.

Each year, I visit Seattle area for 2-3 months and how I panicked last fall when my tablets ran out! Eventually I got some more posted from UK as cost so high to buy in US.

Sometimes I wonder if medics in US conspire to make meds so dear as they make more profit from further treatment and operations. My doctor here says the tablets I take are really cheap. ie a few pounds a packet I think that means. HMMM!

Becky, I'm glad you are going back to some of ...

2012-01-23T10:22:50.532-08:00

Becky, I'm glad you are going back to some of the things you used to love doing. It's really easy to just give up and spend your life sitting down to avoid any dizziness, but it's not much of a life, is it?

I was really intrigued by your reference to Ryan Adams and had to look him up. I'm always somewhat pleased to hear about a celebrity who has Meniere's, because it might be the only way the rest of the world ever hears about Meniere's.

Not that I'm pleased to hear that anyone else has this, but if people who are famous suffer from it and talk about it, the word will get out, and understanding for this dreadful disease will grow. I hope.

The message, for now, seems to be this: Try to live your life as best you can, and don't give in to the urge to give up. I keep saying I won't let Meniere's define me, but it's harder to put that into action than it is to say it.

Just thought id give you all an update on my situa...

2012-01-23T02:45:43.693-08:00

Just thought id give you all an update on my situation. Well no vertigo since last October and had a grommet in December. No problems with the grommet, but I have been struggling to cope with other things related to menieres; Stress and depression mostly, as well as finding the tinnitus hard. Ive kind of got my self into a rut - don't want to do anything, or go anywhere and generally lost interest in life. I have also let this affect my university work ( Im in my final semester of pharmacy). However, Im managing the tinnitus better now with my hearing aid and waiting for tinnitus retraining. I am also taking up an old hobby, which I loved when I was youger - horse riding! I'm going to loan the horse I used to ride, and maybe buy him once I start working full time. In fact I plan to get back in the saddle today! I'm hoping this will help my balance out too. It has picked my spirits up no end, and I've noticed I pay less attention to the tunnitus when I'm occupied. It is a worry though that I will become sick again with the worst element to the disease (vertigo) but I don't want this thing to take over my life anymore. We only get one so I want to live full a life as possible. For me it's trying to balance the fun, work and rest and I'm not going to beat myself up if I have a bad day. I've heard of so many people getting better (Ryan Adams for example) and find it very encouraging. If they can do it, why can't I.

Take Care,

Becky

Depression is clearly an offshoot of Meniere's...

2012-01-22T18:08:39.680-08:00

Depression is clearly an offshoot of Meniere's, for obvious reasons. I'm intrigued by the introduction of reflux as another possible link.

The issue I have now that I think might be tied to Meniere's and the treatments I've had for it is my vision. I used to have very good distance vision, almost 20/20. But since the treatments last year, and especially since the surgery to sever the vestibular nerve, I've noticed my distance vision is quite a bit worse than it was previously. I have no idea what could be behind that, unless it's just the ongoing baseline nystagmus.

It sure is discouraging, though.

One of the things I miss the most is my hearing. ...

2012-01-22T15:53:14.753-08:00

One of the things I miss the most is my hearing. I now have 2 hearing aids ($6000+, not covered by insurance)to help with the hearing loss. As a recently retired teacher, I was known for my super sonic hearing. Some people have mommy ears...I had teacher ears. With the onset of my Menieres I lost a significant range of hearing. I now substitute and if I forget to wear my hearing aids I can't hear students when I call the roll. I have mis-interpreteted words...thinking they dropped the f-bomb but not sure.....like they will tell you the truth. :) I don't wear my hearing aids at home and my boyfriend will complain that the tv is too loud, the radio too loud etc. I find I must look at people when they speak to understand them.
Growing up I thought the worst disability would be hearing loss....I loved to listen to music, nature, whispers etc...never in my wildest dream did I ever imagine losing my hearing to a disease.