Meniere's Disease - My Story

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.

Update April 2014: Since the second Gentamicin injection in March I have been vertigo free and am cautiously optimistic that I will stay this way - we'll see what the future holds. The tinnitus remains and most likely always will. My hearing loss will most likely progress as it does with most Meniere's sufferers but I'm hoping it will take its time. For now I keep to a strict low sodium diet - never consuming more than 2000 mg a day and take a diuretic (Dyazide) every morning. I have missed over 6 weeks over work to Meniere's but thankfully will be returning within the next few weeks. I'm slowly returning to my life and couldn't be happier. I'm so thankful to have found such an experienced and caring doctor who never gave up. I lost everything, including myself in the last few months but I'm learning that being diagnosed with Meniere's was actually a gift - a difficult one nonetheless but a gift that has helped me look at life differently and to never take it or my health for granted.

Update May 2014 : I returned to Dr B just a few days ago for a follow-up appointment. My hearing test went extremely well - I actually passed! My tinnitus is very faint so on most days I don't even hear it now, the fullness has also completely disappeared. Both of these most likely were causing my hearing loss to appear worse than it actually was. I'm not sure if it was the Gentamicin that helped with these symptoms or perhaps this is a natural lull in the disease but I am so grateful for the relief. Dr. B gave me an all clear and I do not need to return for a follow up for four months as long as I remain healthy. I am still vertigo free thank goodness!

Update July 2014 -  I'm happy to report I am still vertigo free. I am still quite cautious with my sodium intake as I still have days when I feel like vertigo is going to attack at any second. I'm hoping this isn't my new normal. I plan on asking Dr. B if a third Gentamicin injection could help. My next appoint to see Dr. B is scheduled for early August.

Update August 2014 - I returned to Dr. B on the 8th for my follow-up. My ear exam went well despite that I feel my hearing has decreased in the last few weeks. I explained to Dr. B. that many of my symptoms seem to be returning despite following a low-sodium diet and taking a diuretic daily. He advised giving a third Gentamicin injection a try, believing that I may need Gentamicin "tune-ups" every few months to keep symptoms at bay. I receive the third injection that day. As to whether it has made a difference is hard to say just yet as I have a nasty cold with congestion that is complicating things and leaving me feeling quite dizzy. I hope to update again once I'm over the cold.

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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