Symptoms
The attacks of dizziness (vertigo) in Meniere’s Disease appear suddenly and usually last a few hours. Vertigo consists of the sensation that the room or objects are rotating around the patient. The dizziness often subsides gradually. The attacks may be associated with nausea and vomiting. The patient may have a recurrent feeling of fullness or pressure in the affected ear, and hearing tends to fluctuate. Over the years hearing may progressively worsen. The unusual noises heard by the patient (tinnitus) may be constant or intermittent. The sounds may be more intense before, after or during an attack of vertigo. Usually, one ear is affected, but both ears are involved in 10% to 15% of patients with Meniere’s Disease.
In Lermoyez’s variant of Meniere’s Disease, hearing loss and tinnitus may precede the first attack of vertigo by months or years, and the hearing may improve with onset of the vertigo.
Sometimes Meniere’s Disease can occur without vertigo. In this type of the disorder, the endolymphatic distention is limited to the cochlea, the snailshell-like spiral tube in the inner ear.
The cause of Meniere’s Disease is not known. There are several theories. Treatments range from medications; to control symptoms to surgery to destroy the vestibular nerve. For more information, see the links listed below.
The National Organization for Rare Disorders, Inc.
My history with Meniere's Disease began in l975 with a sudden attack of vertigo. I had stopped at my parents house after work, and laid down for a nap before going out that evening. When I woke up, something was terribly wrong. I couldn’t sit up. Everything was spinning. I laid there for awhile trying to comprehend what was going on. I called for help, but as the door was closed, no one heard me. I finally managed to get up and by holding on to furniture, make my way to the door. I collapsed in a chair in the living room. I don’t think the whole episode lasted for much more than an hour, but it was quite severe and frightening for myself and my family. We had never heard of Meniere’s before. I had several more episodes like that and some episodes of dizziness that weren't so bad. I went to an ENT who diagnosed me with Meniere’s and prescribed meclizine and a decongestant. Those symptoms faded, and I was symptom free for a long time.
Over the next several years it would come and go, and as the attacks were never really severe or long lasting, I would just take meclizine. But in 1982 it returned with a vengeance. The episodes lasted longer, my hearing became involved at that point and I went to another ENT. He put me on Meclizine, Diazide, and a prescription form of vitamin A. He did allergy tests, x rays and to be honest I don't remember what else. :) My hearing test showed some hearing loss in my left ear. I had previously had a mastoidectomy in my right ear (when I was 16 I had surgery to remove the mastoid bone because of a tumor) Removal of the mastoid bone is thought by some to help Meniere's patients because it allows more room for what ever area it is in there that swells with fluid to swell more.I had hoped that that would spare me Meniere's in my right ear. I remained on this therapy for sometime. Then, my bouts with vertigo lessened. The pressure subsided. I then learned I was pregnant. (With our fourth and last son.) On my next visit to the doctor his first question was to ask me how I felt. I told him my symptoms were better. Than I told him I was pregnant. I will always treasure his reaction. I was afraid he would tell me something awful about how Meniere’s and pregnancy didn’t mix. But instead he said it was wonderful. He also said that no one knows really the effects pregnancy can have on a woman’s body. We are mysterious and wonderfully made. Medically, he thought that the increased blood circulation that comes with pregnancy might have helped. He sent me home with an “enjoy it” prescription.
Remember the phrase, “Welcome to the 90’s”? I had one or two episodes with Meniere’s in the remainder of the 80’s, but nothing long lasting. Then came the 90’s. Life from the medical standpoint hasn’t been good for me in the 90’s. I won’t mind greeting the new millennium. I have always had problems with sinus infections. In 1992 the Meniere’s was bad. The sinus infections were bad. I had to find a new doctor as we had moved to a different part of the state. Wrong choice of doctors, I’m afraid. He gave me another antibiotic, more allergy tests, assumed a lot of my symptoms were from Meniere’s, gave me more Meclizine along with sudafed for the sinus congestion. This went on from March till August. Then I blacked out while driving home with my children and nephew from church one Sunday afternoon. They were all fine, but I ended up in the hospital, transferred from there to another one in ICU. I had smashed my arm, had a good bump on my head, and had seizures in the ambulance. It was then that tests revealed I still had a sinus infection that was quite severe and that was probably the reason I had blacked out. My doctor blamed his lack of treating me for a sinus infection on the fact that I had Meniere’s and he attributed my complaints to that. Needless to say, I didn’t see him anymore.
Well, new doctor. This time I had a hearing test which resulted in my getting a hearing aid for my left ear. I complained of a constant post nasal drip which I felt was related to allergies. She wanted me to have an MRI. I couldn’t do it. (Still can’t) I lived with the drip and recurring sinus infections for the next 3 years. Then, in 1995, my family doctor sent me for a cat scan as the pain in my sinus wouldn’t quit. I was quite surprised by the results. I had a CSF(cerebral-spinal fluid) leak, not a post nasal drip from allergies, probably as a result from the accident. I have had two surgeries to repair it. While none of this is directly related to Meniere’s, it was all somehow involved by compounding or masking other symptoms.
My Meniere’s symptoms abated yet again. Until this year. Now it has returned mercilessly and has attacked my right ear. Maybe having the mastoidectomy only prolonged the inevitable. I don’t know. When it hit this time, it hit hard. I haven’t been able to hear out of my right ear for months now. The pressure subsides sometimes and I get severe vertigo attacks. My ENT believes she has done all she can for me and is sending me to yet another doctor, one who specializes in Meniere’s. I hope he can help. I can no longer listen to music.I can’t understand conversation. I can’t use the telephone. I can’t watch tv. I can’t stand loud noises. I no longer go anywhere alone. Because of the pressure change when a person lies down, I can’t lie flat. If I do, the pressure on the csf leak repair increases, and it can cause it to open. Now, with the vertigo attacks, the only possible position for me is down, in bed. As a result, the leak is open again. I face the probability of yet another surgery.
I will update this when I come back from seeing this new doctor. I hope he has something new in store for me. Right now it’s still Meclizine and Diazide.
UPDATE-July 9, l998
On July 7th I went to St. Agnes Hospital’s Balance Function Center where I saw Dr. Meiteles. I brought with me all medical records pertaining to my ears and sinuses. I also brought a brief personal summary of my Meniere’s symptoms through the years. (I really didn’t want to say all that all over again) I spent over 2 hours there. He was very thorough. Another hearing test showed that I have had a remarkable hearing loss in my right ear since my last test was done in February of this year. I now hear equally bad in both. We made a discovery when I had a Tampanogram done. When the air was pushed into my right ear, I lost my balance for a second. He began to look for a second cause for my symptoms. The good news is, it might not be Menier’s at all in my right ear. The bad news is it might be a fistula. Or, worst case scenario, both. I am now on steroids (Prednisone) Diazide, low salt diet and bed rest for a minimum of two weeks. I will then go back for more balance tests, another hearing test, and, if I can do it, an MRI.
UPDATE
On August 18th I returned to St.Agnes. My first stop however, was to an Open MRI center. I was really hoping I could do the open MRI, but I couldn’t. Because of my other physical problems I find it quite unpleasant to lie down flat.That, coupled with my fear of tight places and fear of being unable to get out of something, made it impossible for me to do.
We (my husband, St. Joe, goes with me) then went on to the Balance Function Center at St.Agnes. There I went through the balance tests. I had dynamic posturography, ENG testing (done with warm and cool air in a tube rather than water which I was concerned about), rotation testing, and moving platform testing. I then met with Dr. Meiteles. I passed all the balance tests. He then ordered another hearing test and tampanogram. The hearing test showed some improvement in my right ear. The pressure applied during the tampanogram still showed some sensitivity to the inner ear which may indicate the presence of a perilymph fistula. I then met with the doctor again. He reviewed everything. I asked him if he was stumped. He smiled. I guess I can never do things the easy way. Or maybe there is no easy way with Meniere’s. He felt that the improvement in my hearing and lack of recent vertigo attacks were attributed to the Prednisone that I had been on for two weeks. We agreed to try that again for another two weeks. We compromised on a CT scan instead of trying another MRI and when I am done with all this I will go back to see him again. We are both leaning towards surgery on my right ear for a PLF. While the symptoms for both a PLF and Meniere’s are much the same, the pressure sensitivity makes it more likely to be a PLF. The symptoms have improved some and if we can avoid surgery, we are in agreement on that, hence the two week “wait and see”. I am also continuing on Diazide and low salt diet and meclizine as needed.
UPDATE November 10, 1998
On my return to see Dr. Meiteles we found that my hearing had regressed to the point it was at when I first saw him. There doesn't seem to be any chance of my recovering any of it. We discussed the risks of surgery. They seem to outweigh any good that can come from it. The CT scan showed "nothing remarkable". I will not be having surgery. I have been to an audiologist. She has reccomended that I use the new digital programmable hearing aids. Because my hearing fluctuates at times, and will progressively be getting worse, these can be reprogrammed to fit my needs. For insurance reasons, I have to wait until December to get them. I pray they work.
UPDATE January,1999
On December 15th we went back to Albany Medical Center and I got my new aids. They haven’t been without problems. I have a constant problem with feedback in the left one. The right one is not very clear. That is probably because my hearing is distorted and not a fault with the aid. We made a few trips back for adjustments. I can honestly say that I hear a tremendous amount more than I have been. For the first time I recognized that my youngest son’s voice is changing. I almost missed that. I’m so glad that I went for these. That alone made them worthwhile.
UPDATE April 19, 1999
It’s springtime now and the birds are back in full fashion. And I can hear them. The first robin I heard made me cry. I missed them all last year. I pray that I can keep hearing them. My hearing and vertigo symptoms remain the same. I’m still taking the Diazide and have had no vertigo problems in a long time.
If you or someone you know suffers from Meniere’s disease, please visit the links below. There are many of us. We can support each other and learn from each other. If you experience any symptoms like these, see your doctor. There are many different causes of vestibular problems. There are treatments that help.
UPDATE July 5, 2001
It’s been a long time since I’ve updated this and there are things that I need to write. The millennium went out with a bang, though not a pleasant one. The years of health problems and especially my deafness, took its toll on our marriage. What followed was a poor decision on my part. In order to avoid any further problems I decided to ignore symptoms of a urinary tract infection. I didn’t want to be sick anymore. It was a poor choice because it led to a severe septic infection that almost killed me. After 10 days in the hospital, I was well enough to come home. The stress was too much for me though and I then had to deal with bleeding stomach ulcers. With medication I was able to recover and needed no surgery. But emotionally, I was wiped out.
In September of 2000, I guess just to get its last kicks, Menieres took most of what was left of my hearing in my left ear. I don’t have very many vertigo attacks anymore. Some say that Menieres burns out after awhile (a long while). The precarious hearing in my right ear is all I have left. With that, along with my hearing aids and lip reading, I get by.
Now, in 2001, the true, new millennium, I still hope for the best. I’ve seen two sons complete college. Two of my sons have married. My youngest that I mentioned at the start of my Menieres story is going to be entering his senior year in high school. My marriage has been tested. My faith in God has been tested. I’ve missed a lot because of Menieres, but I’m surviving. I’ve joined an on line support group. It’s great to share miseries and joys with others that understand the depths of both. Now the new millennium is really here. A cure maybe? Not holding my breath. :)
I’ll be back. :)
LINKS
Meniere's Disease Homepage
Meniere's.Org
The Meniere's Page
My homepage
