Before being diagnosed in December of 2013 I had never heard of Meniere's Disease. It's somewhat rare and difficult to diagnosis properly - that being said I thought it would be helpful to share my story in hopes that perhaps my experiences can help others.
2009
Although I was officially diagnosed in 2013 I've come to realize that most likely I've had Meniere's Disease for many years. In 2009 I began to experience a pulsing in my right ear. It would go away if I turned my head a certain way or pressed on my neck just below my ear. Around the same time I started to experience tinnitus in my right ear and minor problems with my balance. I wasn't dizzy or experiencing vertigo attacks, I felt clumsy, knocking into things, always needing to steady myself.
To spare you a long and frustrating story I'll summarize the earlier years and just say I was tossed from one specialist to the next. I saw an endocrinologist, an ENT, a balance specialist, a neurologist and ultimately a neuro-ophthalmologist who improperly diagnosed me with psuedo-tumor cerebri and was placed on a diuretic. After a few months of this without any improvement I gave up. I stopped taking the medication, told the doctor's I didn't believe in their diagnosis and tried to put it all behind me.
2012 - 2013
I was successful for several years. My symptoms had disappeared except for the tinnitus that came and went. In April of 2012 I experienced my first vertigo attack. I was at work in a meeting when I began to feel dizzy. By the time I made it to a restroom I was spinning violently, sweating, and vomiting uncontrollably. I thought I was dying. The doctor's said most likely it was a combination of allergies and an ear injection that caused the attack. I was sent home with medication for nausea and motion-sickness. After a few days I was back to work. Over the next few months I experienced several vertigo attacks. They came out of no-where and were extremely debilitating. Mid-way through 2013 I made an appointment to see a local ENT. After listening to my story, he conducted an exam and concluded that most likely I had Meniere's Disease. He ordered me to start a diuretic and to stop putting salt on my food. This seemed to work and honestly I forgot all about Meniere's Disease until late December 2013.
Just a few days before Christmas I became very ill. In the two week break I had off for the holiday season I dealt with vertigo attacks daily. I returned to the ENT who restricted my sodium intake to 1500mg a day. Again this tactic worked, but only for a few weeks. In February 2013 I experienced one of my worst vertigo attacks ever. It lasted over 14 hours. I couldn't eat or move - my world spun like it was never going to stop. The attack left me exhausted both emotionally and physically. I had had enough. I knew I needed help from someone much more experienced with Meniere's than my current ENT. It was then through a family friend I found Dr. B who has literally been a life-saver.
Dr. B & Steroid/Gentamicin Injections
The first time I saw Dr. B he knew without a doubt that I was suffering from a severe case of Meniere's Disease and it was only going to get worse if a treatment plan was not put in place. My hearing tests had already confirmed I was losing hearing in my right ear. We started that day with a steroid injection in my ear. The steroid is an anti-inflammatory medication (typically dexamethasone) placed in the middle ear through the eardrum. Dr. B. first numbed my eardrum then put a needle through my eardrum and placed the medication in my middle ear. The procedure hurt a bit and caused a short vertigo attack that lasted only a few minutes. After the injection I had to lay still to let the medication do its thing. Unfortunately despite receiving two injections a week apart the steroids did little to stop my attacks. Dr. B was hesitant to move right to surgery and suggested another approach - despite the controversy around it - Gentamicin injections.
Gentamicin is an antibiotic but when placed in the middle ear seems to target the balance hairs in the ear and basically kills/stuns them. It can if given in too high of a dose cause permanent hearing loss. At this point I didn't care what I had to do or the risks - I needed the vertigo attacks to stop. The procedure was the same, although it hurt much much worse than the steroids. Within a few days after the first injection I could tell it was working. The feeling that everything could start spinning at any moment was starting to go away. I experienced a few dizzy spells but only one vertigo attack in the two weeks after the injection. By the time I was back at Dr. B's for the second round I was starting to believe it was going to work. The second injection helped even more, the dizzy spells stopped, I felt steadier on my feet and began to drive again. Finally I was making progress.
