A Long Struggle With Meniere's

I've had meniere's now for just over 8 years and it has also destroyed my life. One of the worse things is that I'm living alone with no one to help me through the darkest to times. One thing that I was taking for quite some time that really did help is called VINPOCETINE and is a nutural substance taken from the Periwincle plant. It works like Ginko but much better. You should see results within a couple of weeks if its going to work for you.  Usisng Ativan also helps to dull the vestibular system. I've tried treatment from all over the world and nothing helps with this awfull illness. Try not to let it define who you are. You are still the same great person that you were before it started. I have 2 grown children and it's been tough for them and I feel guilt in not being there for them but they've grown up to be fine people. I'm lucky.

I'm still bugging my ENT specialist to try more things but he's pretty well at the end of his rope with what he can do. I've had surgery on my lldeft ear so more surgery is out of the question. My hearing is gone in that ear and reduced in my right. I didn't have any episode until the other night and I actually passed out twice. I could never have imangined an illness that could be so awful and not kill you even though at times you think it will. It's a cruel, devestating infliction on mankind. I wish researches could find out why it happens so they could formulate a cure or something to ease the combinations of symptoms that make up Meniere's.


mondo mondo
10 Responses Sep 23, 2008

Mondo, keep fighting. Do what you can to cope with this. I share your pain. It is good you have family that supports you.

Hi Mondo, I have Meniere's also, and can sympathize with what you have described. Your journey has been far worse than mine and yet you seem to be so strong, and have been so generous in sharing ideas for relief for others with meniere's disease. Take a look at Karen Henderson's website. (www,menieresdisease.ca) I have been considering trying the vitamin regimen they advocate, but I think it is pricey. There are tons of testimonials from people who have recovered from Meniere's using her method, but I have stalled for the last 5 years or so thinking this will go away sometime. I think you have to stay on the regimen even if you get relief or you relapse-so it looks like a life-long investment. Wish you had someone to help when you are sick. My husband is very good when I have a bad bout, although I tell him just to go away and leave me alone-(I feel so rotten !) Hope your meniere's takes a long hike and that you feel better soon. Good luck.

Just remove me from this site, I dont want to ever read or hear about this ugly disease, I'lll figure out my own way out!

I too have suffered the debilitating effects of Menieres Disease. I was finally diagnosed with it about 11 years ago. My first bout was when I was 21 yrs old, my next was when I was 40 yrs old. At 55 I was haveing weekly, sometimes daily episodes that would last up to 12 hours of room spinning and vomiting. Went to the House Clinic in LA, Cal. they prescribed vitamins and Thiamine, but nothing worked.<br />
I went on a massive search project for relief. It got to a point, where I figured suicide was the only answer for relief. I read about a teaching anethesioligist (sp) at Univ of Washington who suffered as I did. Worse he had bouts while he had patients on the operating table.<br />
He wrote highly of a machine called a Meniett. At the time my insurance company wouldn't pay for it, so I forked out the money and bought it. A shunt was put into my left ear canal and I started using my Meniett. What a godsend. The only episodes that I have had is while traveling once and wasn't using it as I should. The other time, the pump in my machine quit and I was getting sick almost daily. I sent my machine back to a repair facility in Florida, another machine was overnited to me, until mine was repaired. <br />
The machine works on pulse waves going into the inner ear to keep the little hairs straight. It is when these hairs jumble together that you lose your equilibrium, get nauseous.<br />
I have lost most of the hearing in my left ear and the tinnitusus is noisy as hell. But I don't get sick anymore.<br />
I am not getting paid for nor was I asked to write this, I just think if you need relief, then contact a good ENT Dr. and ask if he has any experience with this device. My Dr is here in Tucson, AZ is Dr Keith Soderberg, (520) 296-8500. Medtronic is the importer and distributor.<br />
I am now 67 years old and live without fear of these attacks, I use my machine a minimum of 3 times daily, takes about 6 minutes each time. <br />
After a 2 year battle with my insurance company and presenting the paper written by the Dr, which was in the Journal of Science and Medicine. Most insurance companies will now pay for the treatment. <br />
Please folks get yours before ObamaCare takes over, because you probably won't be able to by then.<br />

Thanks SamD43-i am going to do a little research on the machine that helped you. Thanks for sharing with everyone and maybe saving someone's life.

I have had it for about 10 years. I take a dierectic to help take water out of my ear. it helps alot and keeping stress down, I have Meclisine and valium in my purse for ifi get an episode, I feel for you. I have a husband who helps.

I kinda feel like a newcomber here. I have only been dealing with this for about 1 1/2 years. but i understand every word I read. I have bilateral menieres . I went to several doctors who looked at me like i was crazy.finaly ENT diagnosed me. I had 8 injections in each ear steroids.Very painfull 8months.Then I was refered to another ENT that only handles severe cases. The first doctor put me on Maxide and did give me Ambien so I could get some sleep over the ringing. first visit to the new doctor 5 min.visit but he gave me 2 more presc<x>riptions. Valium twice a day and prednisone 1 a day. within 2 days I could get off the couch go outside actualy live some.next visit he told me start taking 1/2 of the prednisone two days later I was back on the couch. now i'm back on the hole pill a day but the doctor wants to talk surgery now because of all the side effects of long term use of the drug. I'm scared and I'm pissed.I feel like a carrot is dangling in front of me and then pulled away. I am fortunate to have a wonderfull wife and some angels helping with costs. I make a decision everyday to win the mental battle. Where the mind leads the body will try to follow. I don't win everyday but I can't controll the attack on my physical abilitys but it cant take my mind. small victorys add up day by day. I sure could use some advice on menieres but I can help with atitude. please feel free to e-mail if you can help or maybe you need my help to cary on.

i am having meniere,s from last 10 years.i got this awful disease at the age of 12 and still suffering from this dreaded disease...no medicine and treatment is working on me.i always remain in fear of getting dizziness.life has become hell.i am not getting job because of disease symptoms...not getting support from anyone,completely alone.no one is able to understand my situation..my friends make joke of me..........when this disease is going to end...........it is better to suffer from cancer than this awful disease........dont know what to do......

I've had Meniere's for six years now and it has changed my life out of all recognition. I can't control it even though I've had a vestibular nerve section on the left hand side. It has come back with a vengeance! But I was told that we are special if that's any comfort. Mondo, get through the days.

HOW I CONTROL MENIERR'S I simply deny it accsess to my body as I do with the common cold, the power of thought is amazing, just say out loud to yourself * get out of my body* but get anoyed with yourself and mean it, try it it does work, I promise, paul