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| Chris's Story | ||
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| This is my story. When I began this project I had not been officially diagnosed with menieres. Nine months and many tests and doctors later, I have a diagnosis. As you will see it has been a difficult and frustrating time. Since finding other people on-line I know I am not alone. Maybe someone will come across my site and say, that is how I feel and that is what I have been through. Then they will know they are not alone either. Feb 19th I caught a cold. Feb 20th was my first vertigo attack. I was the best man in a friend's wedding when the whole room started spinning. I had to walk out in the middle of the ceremony because I knew I was going to fall down if I didn't sit down. I felt very guilty about this for along time. It was only recently that I realized this was my first attack. After suffering from cold symptoms for a week I went to see the doctor. Symptoms were my head feeling heavy, dizzy all the time, limited concentration, vertigo attacks, and then very tired after the attacks. The doctor diagnosed labrynthitis. After a week of antivert the symptoms remained and I was referred to an ENT. This ENT confirmed my primary care physician's diagnosis of labrynthitis and put me on compazine. I had a severe dystonic reaction to the compazine within two days. It was very scary, I couldn't breath and all of my muscles seemed to be contracting and my pulse was as high as 120. My wife rushed me to the hospital where they did their magic. After that I was started on Valium. I didn't take it very long, as it didn't seem to be helping. After several weeks the ENT ordered an MRI, which was negative for tumors and MS. After six weeks the ENT said he didn't know why I wasn't getting better and suggested I was anxious and was told to see a different kind of doctor. This made me very angry. I went back to my regular doctor who then referred me to a neurologist. My primary care physician also did a blood work up for diabetes, mononucleosis, hepatitis and other things. The only thing they found was that my thyroid was low and started me on a daily dose of Levoxyl. That has been controlling my Thyroid for three months now and only need to have it checked every six months. Unfortunately, it did not relieve any of my symptoms. The neurologist did a test that detected a delay in the sound reaching my brain from my right ear. She indicated this was an inner ear nerve problem and she referred me to another ENT. . He scheduled an ENG, nystagmus was noted when I looked to the left. But didn't indicate anything else. I was started on Valium 2mg twice daily. A low salt diet of less than 2 grams a day. I also was told to do some vestibular exercises and walk one mile a day. I also started a daily journal, which I lost when my son was born. I think I left it at the hospital. I started to feel slightly better but the symptoms did not subside. I went back to my primary care physician for a thyroid check up and she prescribed Zoloft, thinking that depression could be causing the tiredness. After three weeks I didn't notice any difference and my ENT said I could stop it. At this time my ENT prescribed a diuretic and said it might be Menieres but was reluctant to make a diagnosis because I don't have tinitus or hearing loss, and referred me back to a neurologist for a second opinion. My ENT only provided her with test results, no opinion of his own. The neurologist stated she felt that I have Menieres. I went back to my ENT and he was still reluctant to diagnosis Menieres due to no hearing loss or tinnitus. Since this appointment, my symptoms have gotten worse. I have had constant pressure in my right ear, off balance, dizzy, nauseated, difficulty concentrating or focusing. One night I had a stabbing pain in my ear for less than a minute, my wife heard a pop, it was very sore but pressure was less for two days and is now back. My wife says that when my symptoms seem to be bad I talk real loud. She also says I get flushed before the symptoms worsen. I am nauseous almost 24 hours a day. I can't concentrate for any extended period of time, maybe 15 minutes to 1 hour before I get really dizzy. If I am not dizzy, my mind is so clouded I can't function. I have found that people call this brain fog. This is the worst part for me, since I am an accountant, I need to use my mind for work I also and enjoy problem solving of all types to keep my mind active. This is impossible most of the time. When I get dizzy, I find an object to focus on to stop the spins, take a Valium, and hope it doesn't get worse. I am also tired from the time I wake up until the time I go to bed. I sleep 8-10 hours a night and am still tired, where I use to sleep 6-8 hours and feel refreshed. After this appointment I went online and did a search for Menieres, I found a site named menieres.org that was filled with information. I also joined the Coping-list@menieres.org. (To subscribe, click on the link and type SUBSCRIBE in the body of the message.) I introduced myself and explained the symptoms I have been experiencing. The response was overwhelming. I learned that I wasn't alone. I also knew I wasn't crazy and that my symptoms are real. At my next ENT appointment, he scheduled me for another ENG, a platform test, and a rotational chair test at Mass Eye and Ear Infirmary in Boston Mass. I had these tests done on July 28th 1999. I am also scheduled to see a neurotologist later in August. He also had me do an at home sleep apnea test on Mon. July 26, 1999. The results of this test are not back yet. He also put me on a 10-day course of Prednizone, which had no effect on my symptoms, which probably rules out Autoimmune menieres. He had tried me on 6 day course, but I started it the day before my son was born, so it was hard for me to tell if it had any effect because of all of the excitement. Current Symptoms
- Ear pressure is almost constant in right ear, as is extreme exhaustion, feeling of imbalance and nausea. All of these symptoms are exaggerated when trying to concentrate or with rapid head movement Current Treatment
- 25 mg Hydrochlorothiazide once a day
- Walk daily Disability | ||
