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.


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.

Monthly Updates 

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.

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!

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 likevertigo 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.

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. 

October 2014 | Still vertigo free! Since my Gentamicin injection in August I've been able to function without thinking too much about Meniere's on a daily basis. I am still experiencing slight ringing and fullness in my right ear - although I am able to ignore it most days. While on vacation I was able to eat without counting sodium on most days. My system seems to be handling higher amounts of sodium without trouble, which allows me to enjoy a restaurant meal without worrying about the repercussions. I seem to experience an unsteadiness around my period each month with nauseous and feeling like a vertigo attack is looming - thankfully it has yet to happen. I do mind extreme or quick changes in the weather which can also leave me feeling slightly ill, but it doesn't tend to linger for long. Overall I would say I am close to feeling as well as I did in the Spring. Leading me to believe it does takes a few weeks for each Gentamicin injection to work up to its full potential. As long as things stay this way I will not have to visit Dr. B to early next year.

January 2015 | A new year! I couldn't be more happy to report I am still vertigo free and in just a few months it will be a year since I've experienced a vertigo attack. I continue to monitor my sodium intake and take a diuretic daily. The biggest change I've made in the past few months which I attribute to my continues success is my switch to a plant-based diet. Ridding by body of dairy alone has seemed to make a large difference. My tinnitus has decreased, I'm steadier on my feet and only feel "off" around my period. My next appointment with Dr. B is schedule for February 6th, I'm curious to see what he will say given my success. More to come after my appointment.

May 2015 | A lot has happened since January! In early February my vertigo attacks and tinnitus came back in force/ I could tell my hearing had decreased significantly in my right ear. After much debate I opted to have Endolymphatic Sac Decompression Surgery to relieve my symptoms. On April 8th the surgery was performed successfully. A shunt was permanently placed in my ear to help with drainage and a semi-permanently tube was placed through my ear drum for ventilation. Following a three week recovery I was able to return to work and life with little trouble. My hearing has since increased, my tinnitus has significantly quieted and my vertigo attacks have gone away. Now roughly six weeks after surgery I can say I feel better and grow more confident each day that perhaps this will finally keep attacks at bay.

If you're interested in following my story or for more on my surgery please check out my latest posts on Meniere's.

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.

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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!

S Rocks said...

Very nice article!