My life with Meniere's Disease
Why Meniere's Disease?
I have had Meniere's Disease for several years. As anyone who has MM knows it changes your life. The attacks come with very little warning. And they might last for several hours or days. When the attack subsides you will feel worn out as though you haven't sleep for days.
I started a blog in 2009 to provide insight on my own condition and any other information that I can provide.
I would love to hear from others who experience this terrible condition.
The beginning of my story of Meniere's Disease
5 years ago I was in a car accident. I was hit from behind. My neck snapped a little and I began to feel woozy. The ambulance came and took me to the hospital. As I was being driven there I became very nauseous and began throwing up. The EMTs were baffled because that type of accident usually doesn't result in someone throwing up. This continued while I was at the hospital. I was released and sent home.
Two weeks later I was driving home in the evening as I turned into the driveway I became very dizzy and sick to my stomach. My wife worried that I was having a heart attack. I wasn't, I was having my first Meniere's attack.
I went to an ENT the following week and he tested my hearing and suggested what my problem might be. It was either vertigo or a rare disease called Meniere's. Which he described as a category that doctors put patients who have problems with their balance but don't have vertigo.
Well, I was tested for vertigo and I didn't have it.
So, my journey with Meniere's began.
Tried the low sodium diet, the diuretics and the balance exercises....
After the initial diagnosis of Meniere's disease I went on the low sodium diet which at first seemed to help but then stopped. I was also put on a diuretic, which makes you go to the bathroom many times a day. Didn't help. I was given exercises to help with my balance, like the sodium diet it seemed to help but in the end I was still getting sick.
Difficult times became worse
It seemed like every day I was having an attack. On the good days I would take my antivert and within an hour the spinning would go away. But on the bad days, the spinning would be intense, I would become nauseous and I would start to throw up.
The sweat would be pouring off me and i would usually end up on the floor. Unfortunately, most of the severe attacks happened at work. On 5 different occasions the EMTs would have to wheel me out of the place I work to an ambulance then to the emergency room. It was very embarrassing.
Finally I went to my ENT and told him that I had to do something because this was making life unbearable especially for my six year old son who had to see his daddy this way.
He recommended a specialist who only dealt with inner ear problems.
Hoping the new treatment will work...
My new doctor was a well known inner ear specialist in Atlanta. From what I read about him he was on the leading edge of all things dealing with the inner ear, such as tinnitus and Meniere's disease.
At first he suggested the Meniett device, a relatively new device that blows pressure in your ear and supposedly lessens the chances of having an attack. Unfortunately the device is so new that the insurance companies don't cover it.
The next step was the gentamicin injections, a procedure that I describe later in this lens. I would get 4 injections total with the injections being spaced out every 2 weeks.
At this point I was ready for anything but the attacks were still coming.
The gentamicin injections
Gentamicin injections are given to Meniere's patients to kill the balance hairs in the inner ear; these hairs send signals to the brain about your balance. The injections are given in the ear that has the Meniere's disease. (Ask your doctor about how he determines which ear is bad. In my case the ear that I had the most hearing loss was treated)
I was given 4 injections over the course of eight weeks. Although my doctor told me there would be little pain, the procedure seemed very painful to me and I felt dizzy after each session.
When all the injections were given, I felt like I had made great progress. The dizzy spells were almost gone and I felt pretty good. But that didn't last long.
Back to the drawing board...
I guess it was a month after the last gentamicin injection when I had another attack. I wasn't 2 miles from my home driving to work when out of nowhere an attack came on and it was a bad one. Luckily I was able to get the car off the road. I had pulled into a fire station and as my luck would have it everyone was on a call. I sat in my car, my head spinning as I called my wife. She was on her way. I debated whether to call the ambulance, but then I started to throw up. I some how managed to call 911. It was hot that day I was sweating profusely. So I tried to make it out of the car I took 2 steps and fell face first on the lawn in front of the fire station. It wasn't long before my wife got there and so did the ambulance. I knew the drill; they started an IV and gave me phenagan as they took me to the emergency room.
It took hours before the spinning stopped that day and to make matters worse I had cataract surgery the next day.
For the next 2 months I had one attack after the other. Finally another trip to the emergency room made me realize I had to take drastic measures.
I had to go on disability.
Unable to work
Getting on short term disability was no easy task because Meniere's disease is not widely known. Usually someone goes on short term disability under the assumption that after a few months you would feel better and come back to work. Well that wasn't the case with me since there isn't a cure for Meniere's Disease. I had no idea how long it would take to feel better. I was off work for two months. I did feel a little better so I went back to work. The very first day back I got sick, not a real bad attack, it lasted about 30 minutes without any vomiting.
I was very down at this point. I wondered if things were ever going to get better.
And they did.
Relief and hope
After that attack on my first day back at work, I was determined to fight this thing. I made sure that I took all my medication every day and I scheduled an appointment with a vestibular rehabilitation therapist.
I had 5 sessions with the therapist. I was a little skeptical because I had heard that MM patients rarely got anything out of VRT. But I did. The exercises that were given to me gave me confidence in my balance and I learned two things. One, don't rely on your eyes for all your balance needs; your vestibular system in your inner ear needs to work in conjunction with your vision. Two, remember that MM patients don't have attacks merely by turning their heads like a vertigo patient.
Well, I haven't had a major attack for quite a while. Maybe the gentamicin injections finally started to work or maybe the medication is working, I'm not sure. I'm just glad that the attacks have ended for now.
What is Meniere's Disease?
Meniere's Disease is an illness of the inner ear that causes many symptoms such as dizziness, vomiting, pressure in the ear and tinnitus which is a constant roaring sound in the ear. Although it is called a disease it is more properly classified as idiopathic, meaning that the cause is unknown and so is the cure.
Meniere's Disease is relatively unknown because it only occurs in a small number of people.
What triggers a Meniere's Attack
When you have Meniere's Disease you are always thinking that an attack is around the corner. And with good reason, it just might be. But is there something that brings it on? What triggers an attack of Meniere's Disease?
There are some people who believe that MM just happens out of the blue. It's due to the enlargement of endolymphatic sac (also called hydrops). When this happens the brain is receiving false information from the balance area of the ear. And according to most literature that endolymphatic sac is enlarged in part by the overuse of salt.
I have been told that visual stimuli and quick movements, especially turning your head, will not bring on attacks. I understand their reasoning but I'm not quite sure if I believe that. I know on numerous occasions that I have turned my head quickly and had an attack. But I have been told that folks with vertigo (BPPV) are the ones who have attacks due to quick movements of the head and visual stimuli.
Meniere's Disease and Salt
One of the first ENTS that I saw told me that a reduction in salt was vital to minimizing the attacks of Meniere's Disease. I thought that wouldn't be so hard. I would stop using the salt shaker and cut out a lot of my sodium. Of course that's all wrong. Salt or sodium is in most every food except raw vegetables and fruit. The recommended range for sodium for an md sufferer is between 1000 and 1500. A piece of pizza with no topping can have as much as 1200 mg of sodium. And if you have toppings that could go over 2000. That's just one slice!
And forget about soup, especially soup in a can. That's about 1000 mg right there. Any processed food has a lot of sodium in it.
The food served at restaurants are usually filled with sodium. Unless you know the chef and ask him to prepare something low in sodium then you will blow your sodium quota in one meal.
I tried to maintain a low sodium diet but it was very difficult. And frankly I don't think it helped my Meniere's Disease either.
Have you ever heard of Meniere's Disease
Many Meniere's disease patients also have tinnitus. Tinnitus patients hear a constant sound such as a hissing or roaring or ringing sound in their ears. Imagine hearing an unpleasant sound all day. That's enough to drive anyone crazy.
Tinnitus is a symptom of hearing loss. It is also associated with Meniere's patients because both deal with the inner ear.
Tinnitus can be caused by several factors.
Loud noise not only causes deafness but can also cause tinnitus. You have to wonder how many musicians of the last thirty years have tinnitus.
Medications often have side effects and tinnitus can also be one. High dosage of aspirin is one culprit. So are diuretics which are commonly used by Meniere's disease patients.
Excess fluid in the ears can contribute to tinnitus.
B12 deficiency is also a factor in tinnitus
Growing old can cause many problems and it also can cause tinnitus.
Head and neck injuries affect nerves that may cause inner ear damage and tinnitus.
Acoustic neuroma is a rare growth on the cranial nerve which goes from the brain to the inner ear. It usually causes tinnitus in one ear.
The stages of meniere's disease
The first stage consists of dizziness or vertigo lasting anywhere from minutes to hours. I certainly can attest to this stage because when I became my meniere's journey the attacks were often and without warning but most of them lasted for hours.
The second stage is when the hearing loss and tinnitus intensifies causing hearing problems. I definitely had hearing problems and as a matter of fact my hearing in my left ear is still getting worse. But the tinnitus usually only occurs when an attack is imminent.
The third stage is the burnt out stage of Meniere's disease where the hearing loss is severe and the vertigo is mild or have ended completely. I wish that I was in that stage and I thought that I was about a month ago but the attacks that I have had in the past week shows me that my bout with meniere's isn't over. I have had some people tell me that their meniere's was dormant for many years only to come back, not as bad as before but it still comes back. I would like to see my meniere's go away for about 40 years!
Of course with meniere's disease nothing is certain so these stages might not apply to everyone.
Things that should be avoided if you have Meniere's Disease - CATS (not the musical)
- Caffeine: Because it is a stimulant and it makes Tinnitus worse.
- Alcohol: Doesn't mix well with your medication.
- Tobacco: Restricts the blood vessels.
- Salt: See above.
Valium for meniere's disease
One medication that I have had luck with is valium. Usually valium is taken for anxiety and nervousness. With meniere's disease valium can be very helpful because it helps relax the vestibular system. The amount of valium that is usually prescribed for meniere's patients is a lot smaller (in my case 2 mg) that when prescribed for anxiety.
Menieres disease and diuretics
One medication that has seemed to help over the years is a diuretic called Triamterene Hctz or Dyazide. Diuretics are helpful because they reduce the amount of fluid in the inner ear which is a cause for the meniere's attacks. What makes this diuretic different than others is you don't have to go to bathroom constantly during the day.
Low salt diet
Famous Meniere's disease patients
- Alan Shepard, the first man in space.
- Vincent Van Gogh, because of his dizziness he was thought to have had Meniere's Disease.
- The poet Emily Dickinson.
- The great author Jonathan Swift
Favorite links pertaining to Meniere's disease
Artificial Inner Ear
New Development that may help Meniere's patients!
An encouraging development is taking place at Johns Hopkins. Dr. Charles Santina is working on an inner ear device that will help maintain balance. To read more about this go to my blog My life and Meniere's Disease
Another new inner ear device is being tried out in the state of Washington
Hearing loss and Menieres disease
Hearing loss as you can imagine is a common problem among Meniere's disease sufferers. In my own case I have lost most of the hearing in my left ear which is the one with the meniere's. The gent injections that I have had over the years have seemed to make the hearing worse. Unfortunately a lot of the treatments, especially surgery, have an adverse effect your hearing.
Meniere's in both ears
Meniere’s disease is a difficult thing to deal with for a few reasons. One there is no cure which means you have to somehow have to lessen the symptoms of it, like vertigo and nausea. Another thing is that it seems difficult at first to distinguish whether you indeed have Meniere’s disease or maybe some other inner ear and balance problems. Then if you are diagnosed and you think that things can’t get any worse, unfortunately they can. Having Meniere’s disease in both ears (bilateral) is really challenging.
Headaches and Menieres disease
There seems to be a connection between headaches, migraines and Meniere's disease. On my blog I have written several posts about the subject and there are lots of people seem to think the same way, especially with regards to migraines, which are way more than just a headache.
Update on my condition
After a relatively quiet winter and spring, I started to have meniere's attacks again this summer. They weren't as bad as before but they still gave me cause for worry. I am hoping that it is only a slight setback to my general recovery.
Things are a little better now. I stll have the occasional attack, but nothing severe. Hopefully it will stay that way.
The past two months have been rough but I am sure things will get better.
I have been on disability all summer because of all the meniere's attacks that I have had. I also had 2 more gent injections.
I am in the process of applying for long term disability, social security
End of 2011
started to have bad attacks again...
End of 2012
While the number of attacks have subsided dramatically, my hearing has gotten a lot worse and my balance doesn't seem very good at times.
Memory issues with Meniere's disease
Something that I encountered with meniere’s and apparently others have too, is having problems with memory. I’m not exactly sure why but I think it has to do with the stress that meniere’s disease produces. Stress seems to make me forgetful along with being agitated. If you feel that way as well leave a comment and let me know.