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Meniere's Disease

Question:

Please describe your experience with Meniere's disease. Submit Your Comment

Comment from: messedup, 55-64 Female (Patient) Published: March 26

My Meniere's disease episodes started in 2010. The first one felt like someone was trying to push me down from behind, then the building felt like it was moving from beneath my feet. I went to the emergency room, the whole time I was there I was throwing up in a bucket, unable to even understand what was going on. When they got me in to the room and got finished with whatever test they were doing, they told me that I had a vertigo episode, gave me some Antivert for the dizzy spell, and told me to go home get some rest and see my doctor. All my doctor could do was give me some exercises to do to help me with the vertigo. However this did nothing, and at the suggestion of one of my friends, I went to see an ENT specialist. He found that I had lost 30 percent of my hearing in my right ear, he then sent me to another ENT specialist. This doctor then told me that I would have to go on a low sodium diet, 500 mg or 1/4 teaspoon per day. This was going to be a massive undertaking for me to convert to this low sodium diet. To say the least it has been very depressing, and frustrating. Well, I did as the doctor recommended and took a journal with me every day to log the amount of sodium that I took every day. Eventually he realized that a low sodium diet would not help me with my episodes, since they kept showing up every two days no matter what I did. So he suggested that I have surgery in which he would remove some bone behind my ear to allow the endolymphatic sack to be able to decompress. This did help and after a while I was feeling more normal, but still had some balances issues which were minor issues. I was happy and glad to have my old life style back. The vertigo came back this year with real gusto and vigor. So I am back on the medication that doesn't work, and diet that still doesn't work. When they came back I was having them every other day from January 19 to February 26. They slowed down then, I don't know why. The only thing that changed was that I also had a system wide infection going on which was treated with antibiotics. I however was told later that it was just a coincidence that, that happened. The last doctor told me that the Meniere's has come back and in order for me to get relief from it, it may take a more invasive surgery to get rid of it altogether. I have yet to see the surgeon to get this part done. I will let you know when it happens.

Comment from: Boating101, 55-64 Male (Patient) Published: March 10

My diagnosis started out as a pin stroke or TIA (transient ischemic attack) stroke. Ultimately it was diagnosed with Meniere's disease. My episodes last from 2 minutes to several hours with vomiting, ear ringing, and extreme dizziness. Diuretics seem to help some but nothing last more than about 3 months at a stretch. It's like a switch gets thrown and an episode begins. I also get brain fog and am unable to put my thoughts together.

Comment from: KAY, 65-74 Female (Patient) Published: March 25

I have had Meniere's disease for 25 years. I get so dizzy I cannot walk or cope with it. I get sick to stomach and usually it lasts 3 to 4 days. I was on water pill and meclizine. Now ENT doctor says I have benign paroxysmal positional vertigo so I have to have that taken care of. I hate the feeling; my sister had tubes put in her ears and does well now. Sad not to have cure.

Comment from: MENIERE, 65-74 Male (Patient) Published: January 31

Sometimes, I feel pressure build up in my right ear and cause instability. It lasts for at least 15 minutes. The neurologist examined and told me that the disease is called Meniere's disease. He has asked me to undergo MRI screening of brain. A week later, I am undergoing the screening. I am every day walking at least 3/4 of a mile to keep me in good health. I experience ringing in the ear (tinnitus) at the same time. Some people say I should go to an acupuncturist to cure this problem.

Comment from: beargap, 65-74 Female (Patient) Published: June 17

I felt dizzy this morning, so I took a motion pill which helped me avoid nausea. I have felt washed out for the rest of the day and actually slept for hours. When I have had attacks in the past, I throw up violently and then end up wasting the rest of the day recuperating.

Comment from: Laurie , 55-64 Female (Patient) Published: April 18

I wonder if anyone else had a trigger to eliminate bowels. I had this as well as nausea from Meniere's disease.

Comment from: Tom, 55-64 Male (Caregiver) Published: September 07

After spending a day at the beach with friends, eating salty grilled meats, not hydrating properly, my wife woke up with severe benign paroxysmal positional vertigo, BPPV. Fortunately, we had just been talking about it at the beach when one of our friends successfully treated himself with the Epley maneuver. After a visit to her doctor, who did the maneuver, and several successive home treatments by myself, having learned the treatment on YouTube, and watching her doctor, her vertigo passed in a day or two, then returned for a few weeks, then passed for good! Do the Epley, don't give up, it works!

Comment from: pop, 35-44 Female (Patient) Published: September 22

I am at the early stages of Meniere's. I am a single Mom of 3 kids 1 of which is disabled, it's been 9 weeks now and that's me just out of bed the past few days without falling over or being sick. Meniere's has ruined my life is all I can say. I am afraid to go out I can't do anything with my children anymore which makes me very depressed and am very anxious all the time waiting for it all to start again. It's changed me from a very happy social 41 year old into a shell of what I use to be. Staying in bed when these attacks happen just isn't an option for me with my children and nobody else to look after them. I take 1 day at a time and exist basically because at the moment. I have no life at all and the thought of spending the rest of my life like this I'd rather not think about its a life changing condition and I just pray more research is done about this little known disease to help and hopefully cure it for people in the future.

Comment from: 45-54 Female (Patient) Published: August 03

My diagnosis of Minier's occurred over 30 years ago. We had no insurance to speak of, but after 3 days of being so dizzy all I could do was crawl on hands and knees to the bathroom, I had my teenage brother drive me to the ENT doctor. The doctor did lots of tests, and then said, "I don't know what it is. Come back in 6 weeks if you still have problems." Since I had a full time job but was unable to work at all while feeling so dizzy, my brother took me across town to a different ENT doctor, who also did tests but was able to tell me that day what was going on. He also gave me a prescription for Antivert, information about the syndrome, and instructions on what to do whenever attacks would occur. As that doctor told me it would be, my tinnitus and hearing loss in the affected side has been permanent. He told me nothing would improve the hearing, but surgery could be done to stop the dizziness and tinnitus, though that would destroy what hearing was left in the affected ear. Life is challenging with hearing impairment, but the symptoms are manageable. I chose to keep what hearing I had left as long as possible. Needless to say, I never went back to the first ENT doctor I saw about this.

Comment from: Kathy, 55-64 Female (Patient) Published: May 02

I have been dealing with this disease for about 15 years now. Took seven years and five different ENT doctors to diagnose me. Thank God every day that I found the right doctor to help me. He told me to watch my salt intake and it would change my life for ever. Low salt or no salt makes the biggest difference in the world. I still have some episodes but not as often or as bad.

Comment from: missy, 55-64 Female (Patient) Published: February 11

I have this dreaded disease since 2006. I have had four steroid injections in each ear and last a surgery called endolymphatic shunt? My head is so tender I can hardly touch it. The procedure has helped, though. Before this, I could not get through a single day without falling.

Comment from: 35-44 Female (Patient) Published: February 25

I've had it over 15 years. I've many episodes of vomiting sometimes lasting six hours or more. I've been on meclizine and Diazide. I have gotten gentamicin injections in the ear every three months. I've experienced hearing loss. My diet is low-salt, no caffeine at all, and nothing containing aspartame or MSG. The worst thing about this condition is that I never know when it will hit.

Comment from: mia, 35-44 Female (Patient) Published: December 12

After I gave birth to my daughter, I wanted to be back on birth control. The doctor's prescribed a birth control pill that was progesterone-only and was fine to use while nursing a baby. After several months and several disabling bouts of extreme vertigo -- to the point were just turning my head in bed induces vomiting -- I finally got myself to the emergency room. They figured it had to do with sudden and extreme pressure in the inner ear. I later realized it occurred once a month, just before my timed menses (remember birth control pill).

Comment from: 55-64 Female (Caregiver) Published: November 26

I am a 58 year old female and about two years ago, started with the right ear affected as fullness, ringing, noisy. The dizziness set in and then to a point of sensation of things spinning. It went away then came back, but only with the right ear having hearing loss. I had CT scans, MRIs. The only thing to save you from the attacks/dizziness is an over the counter now; product called Bovine (meclizine 25 mg) similar to Dramamine but not the same! I have been saved from having any issues with Meniere's or symptoms, as when I feel some uneasiness or dizziness, I take one tablet and I have no further issue until on down the road.

Comment from: Bad ear, 45-54 Female (Patient) Published: June 11

I was feeling great in the a.m. And did my regular walk and exercise routine. As I got ready to go out to a dinner function my head was very fuzzy and my ears were ringing more than usual. My left ear also felt plugged and earlier that day I was having worse hearing issues than my usual. At the start of my dinner function I knew I had to return home and the onset was severe. I could hardly stand up. I went right to bed and still could not move my head without the whole room spinning and feeling severely noxious. Lying very still with covers over my eyes is the only thing to help. It began to disappear after about 6 hours and you really feel zapped of energy. I also had this about two months ago and before 2 years ago. Unfortunately I have been to many ENTs regarding my hearing loss in left ear. They don't know why I have it and they can't fix it.

Comment from: Phylly, 65-74 Female (Patient) Published: May 30

I had dizzy spells, nausea and sweating.

Comment from: IJ, Male (Patient) Published: September 26

I have Meniere's disease and I have a constant ringing in my ears. I sometimes have a loss of balance and dizziness with infrequent blurring of eyes.

Comment from: Carol, 55-64 Female (Patient) Published: September 20

At age 34 i after a Cesarean birth of my daughter i started to suffer vertigo. Postpartum depression was blamed. After not subsiding I was diagnosed with Meniere's disease. This went on and off for numerous years. My attacks would be so bad I would fall without warning. Drop attacks, I would spend days in bed not being able to move. My last drop attack was 10 years ago and ended up falling face first on a concrete pavement. After spending weeks in hospital I felt deafness severely in the left ear. Since then i have had no more severe attacks. I am now 55 years lost significant hear loss, but i am happy that i can finally live my life again. Meniere's is not a nice illness and hard for doctors to diagnose.

Comment from: roadrambler, 45-54 Male (Patient) Published: August 31

My experience with Meniere's disease was and still is a very slow and trying process. In the beginning I simple started having trouble hearing. Really no surprise there since there is deafness all in my mom's family but by the time I get into my 40's it has become profound and speech perception has really become a problem.

Comment from: alice, 75 or over Female (Patient) Published: April 20

I notice a strong loss of hearing sometimes for a s long as 2 days. The ringing is intense and it changes when I clench my teeth. I have it in my right ear all the time but this is now in my left ear.

Comment from: crystalw, 35-44 Female (Patient) Published: February 14

I had my first bout with this disease 5 years ago. Doctors were at first baffled to figure out why I was having disabling dizziness and nausea but finally we found something that helped. They gave me exercises to do many times a day with the aid of someone to make sure I could be steady to do them. The exercises helped to stabilize the crystals in my middle ear.

Comment from: Leah, 65-74 Female (Patient) Published: May 31

I have experienced Meniere Disease for the past 14 years, as a direct result of a fall and a head injury. At times I am deaf in my right ear, but that has subsided, at least for the time being. I also have vertigo, which ranges from severe attacks where I cannot even crawl to the bathroom to no symptoms at all. This week I have had a very mild attack where I fell twice while trying to get up off the couch. Sleeping in a dark room seems to help me most and I take two vitamins (Lipogen two capsules twice daily; Niacin 50 mg twice daily) and an old formula which has to be compounded at a compounding pharmacy called "Histamine Diphos" 1-10,000 ML, 2 drops under the tongue twice daily. These were prescribed by the ear specialist I see and seem to help some. My last vertigo attack 18 months ago was extremely severe, so I'm grateful that life has been almost vertigo free until yesterday, although the ringing, buzzing, sometimes roaring in my ears seems to be with me until my life is over.

Comment from: jo6161, 55-64 Female (Patient) Published: May 19

I've had short dizzy spells for about 6 years. Recently it has got much worse in the fact that I have to lie perfectly still and feel unable to talk or walk because thing are spinning around me. It is the most horrendous feeling. The last two episodes lasted for hours and I was physically sick. I'm usually alone when these attacks occur but recently a friend was with me and she was horrified, she said my eyes move about very rapidly and she said it looks like I'm drunk as I'm unable to get my balance. I must also say that I have very poor hearing and have worn two hearing aids for the past two years during an attack I have no hearing at all. I have been under the doctor for ear problems for the past 17 years and have never had a diagnosis for my problem. Tomorrow I am having an mri scan so hopefully I will get some better treatment. I'm fearful of the next attack and seem to be very unsociable refusing to go out. My only worry is that there is no cure. I don't think I could live with it for the rest of my life. I'm female and 56 years old.

Medically reviewed by Peter O'Connor, MD; American Board of Otolaryngology with subspecialty in Sleep Medicine

REFERENCE:

"Meniere disease"

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