Meniere's Disease

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.

Despite being officially diagnosed in 2013 I have come to realize that most likely I have had Meniere's Disease for much longer. In 2009 I began to experience a pulsing in my right ear (almost like I could hear my heartbeat). 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 problems with my balance. I wasn't dizzy or experiencing a vertigo attack I just felt clumsy - knocking into things, always needing to steady myself. To spare you a long and frustrating story lets 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 (a neurological disorder caused an increase in cerebral spinal fluid). I was placed on a nasty diuretic that made me feel sick and exhausted every day. 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.

I was successful for several years. My symptoms had disappeared except for the annoying tinnitus that came and went whenever it liked - but overall I thought I had overcome whatever was wrong with me. In April of 2012 I experienced my first vertigo attack. I was in a meeting when I began to feel dizzy. I excused myself and made my way to a restroom. By this time I was spinning violently, sweating, and was vomiting uncontrollably - I thought I was dying. I lay on the floor with my head on the toilet until someone came in. I called out to her for help - she called my roommate who luckily only worked a block from me. She managed to get me up and to our local urgent care. It was only then with medication they were able to get the attack under control and explain what had happened. 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 nauseous and motion-sickness. After a few days I was back to work and felt fine despite that the tinnitus had returned in my right ear. Over the 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 who after listening to my story, conducted an exam and conclude 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.

It was then - just a few days before Christmas that I became very ill. In the two week break I had for the holiday I dealt with vertigo almost everyday - it was awful. 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 simply spun like it was never going to stop. The attack left me exhausted both emotionally and physically. I had had enough. I couldn't go on this way. I knew I needed help - 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.

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 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 - many individuals have success in controlling their symptoms with these injections. 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 just a few minutes. After the injection I had to lay still on my left side to let the medication do its thing. Despite receiving two injections a weeks 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 them. It also if given in too high of a dose can 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. I couldn't work, drive, or go anywhere by myself because I never knew when an attack could happen. I talked it over with family and friends and told Dr. B to go ahead with the Gentamicin. 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.

If your interested in following my story please check out my latest posts on Meniere's or my updates page for my progress, treatments and doctor's visits.

Please feel free to contact me with any questions you might have about my experience, low-sodium diet or Meniere's. For more information about Meniere's I highly recommend the Meniere's Disease Information Center. My go-to sites for low-sodium recipes are The Daily Dish (Christy also suffers from Meniere's), Happy Herbivore, Oh She Glows, Sodium Girl and The Low Sodium Blog.

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Christine Hawkins said...

How scary! I have heard of vertigo of course from working in the hospital but did know it can affect someone with such young of age! This is crazy. I am happy you are doing better and seem like you have it controlled! That's great!

Sweet Catastrophe Blog said...

Thank you so much Christine for your sweet words! Yes, I was terrified the first time it happened, thankfully with a great group of doctors we have things under control, at least for now!