Friday, February 18, 2011

I'm Just a Freak - Living with Meniere's Disease

Ever since I was a kid, I was different. I played a lot by myself. Loved to read and make up stories. Got teased and ridiculed. I was a freak. As I got older, I learned to embrace my geekiness and freakiness. But one thing makes me different and I would love to get rid of it. I have Meniere's Disease. When I was first diagnosed, I didn't tell anyone beyond my family and close friends. But I eventually got over that and posted it on my website. I've recently had several emails about the disease so I thought I'd answer some questions and concerns and explain a little about it on my blog today.

Meniere's is an inner ear disorder that causes bouts of vertigo, dizziness, fluctuating hearing loss that becomes permanent, and tinnitus (ear noise or ringing in the ears). That's a standard explanation, anyway. Like old Rose said in Titanic, "The experience was quite different." Or something to that effect. So, here's a short version of my story.

Way back in the 90s in LA - yeah, I'm that old - I began to notice that doing turns in dance classes made me dizzy and sometimes nauseous. I ignored it, chalking it up to the fact that I just didn't dance as many hours a day as I had in the past. Then I began having slight ringing and fullness in my left ear. I went in for a hearing test but they said my hearing was normal. The doc did a water test, where she squirt warm water into my ear canal and made me almost puke right there in her office. The verdict - vertigo. Okay. She gave me a prescription and sent me on my way. I took one pill and hated being so tired from it so I stopped. I didn't have any other symptoms so I ignored the ear noise and went on my merry way.

Flash forward to 2002 and we were now living in Arizona. I came down with a bad case of a stomach virus that had me crawling to the bathroom and praying to the porcelain god every few minutes for several hours. The odd thing was that I had vertigo with it and I'd never had that in the past whenever I got a stomach virus. Hubby called the doc and I got a prescription for some heavy duty anti-puke meds, which stopped the vomiting. Thankfully! Then I slept for a day or so before feeling normal again. This happened again a few months later. Then again. After that third time, it didn't return. But my ear noise was worse and I started asking my husband to repeat things he said to me. He made a joke that I was losing my hearing. When it didn't go away, we got worried and made an appointment with an ENT (ear-nose-throat doc).

The hearing test came back normal. He asked if I'd recently had vertigo. Yes. He asked if my ears ever felt clogged with cotton. Yes. He tilted me backwards on the table and adjusted my head. No vertigo then. The next test was an MRI to rule out a brain tumor. Here's where I really began to panic. A brain tumor? You've got to be kidding? I can't have a brain tumor. I'm too young to die. I don't think I slept very well until we went in for the results. Negative. My brain looked fine. Whew! But what was happening? The next tests were some eye movement and other stuff but the worst was the water in the ear. Oh, no. I'd been through this before. I told him it caused vertigo but he said they had to do it and I couldn't take any meds beforehand. Great. So, if you guessed that I puked during this test, you'd be right. I felt miserable afterwards and hubby took me home for a long nap. I swore that no matter what, I'd never set foot in another ENT's office again.

Of course, I had to go back for the results. Now, you don't actually have tests for Meniere's. What they do is rule out everything else so that you're only left with that disease. The good news was that I wasn't going to die. The bad news was that Meniere's is a rare and incurable disease that can incapacitate and disable it's victims. Fabulous. I was informed that I had a mild case. A mild case? You've got to be kidding me? I really didn't want to know what having a serious case was like. I didn't want to be this kind of freak with a freaky disease. I wanted a cure. Denial stage? Yep.

With no cure and few treatments, I was pretty much on my own. Over the years, I've done internet research and experimented with various treatment options. I've found that sufficient sleep and lots of exercise works best for me. Trampoline, jumping, turning, riding a bike, swimming, anything that challenges my balance and inner ear helps. When I do sense an attack coming - I can usually tell now - I take Dramamine or it's equivalent to keep the vertigo under control. I still have to sleep a lot afterward, but I can't do anything about that. I'm now trying an herbal pill that is supposed to help reduce the tinnitus (ear noise). I will have to take it for up to 2 months to know if it works, but I figure I can't lose anything so I'm going for it. I use a sound machine in order to sleep at night. Otherwise what I call the cicadas in my head would drive me nuts and I'd never get any sleep.

I actually went into remission for nearly 3 years before I had another attack. This attack happened very recently. Even though they've gotten less severe over the years, I still fought really hard not to have another pity party. Is it difficult living with this disease? Heck, yeah. Will I end up totally deaf? There's always that possibility. But my hearing was above average to begin with so I have high hopes I won't. Even with the hearing loss I do have, I'm still in the normal range. After so many years, the disease tends to hit a burn-out stage. I hope that's where I'm headed. I'll have permanent inner ear damage, no getting away from that. But as long as that darn vertigo stays away so I can function and write my novels, I'll be very happy.

Some believe VanGogh had Meniere's and cut off his own ear trying to get rid of tinnitus. If that's true, I can certainly sympathize, but I'm not going to try that remedy. I'll just take it one day at a time, be thankful I'm able to work from home, and embrace my freakiness.

13 comments:

Jan said...

My best friend just went through all of this. Same Diagnosis.

Dana Davis said...

I'm sorry to hear that, Jan. I hope she's coping.

Dana Davis said...

Update: That herbal pill that is supposed to help reduce the tinnitus didn't work. Don't waste your money. Oh, and get your thyroid checked regularly. If there's something wrong with it, that can make Meniere's worse. I know. I recently had 8 attacks in 6 months because of it.

Ruth SunnyAZ said...

Just read your post. I was diagnosed with Meniere's last summer. I have been receiving treatment through Upper Cervical Care, and I feel 90-95% back to my pre-meniere's condition. If you haven't researched this option, I highly suggest you do. I has truly given me my life back. So grateful!
Ruth

Ruth SunnyAZ said...

I just read your blog. I was diagnosed with Meniere's last summer. I have been receiving treatment through Upper Cervical Care. If you have not yet researched this, I urge you to do so. I have been receiving treatment for less than a year, and feel 90-95% back to my pre-meniere's condition. Hope it can help you as it has helped me.
Ruth

Dana Davis said...

Great to hear from you, Ruth. Sorry you're dealing with Meniere's but glad you've found some relief. Thanks for the treatment info. I'm actually in remission again right now, thankfully! It lasted 3 years the last time so I hope I get that lucky again. Have a wonderful week!
Dana

Unknown said...

The curse of Meniere's has been with me for 15 years now! I can do fine until I have too much salt or too much sugar. I was able to get off of all meds by controlling my diet. If I do eat a high salt or high sugar meal, it's as if a huge alarm goes off in my ear. Because of Meniere's I'm very healthy! Loved your recommendation for exercise too! Thank you so much for posting this on your blog!

Dana Davis said...

You're very welcome, Unknown. Glad you found your triggers and ditched the meds!

Steelyjan said...

Dana. Most of your story is EXACTLY what my diagnosis was like. it was a 4 year adventure in diagnosis an good new stories which were hard to hear as I did not get an closer to finding out what was wrong with me and many thought it was in my head. I was diagnosed in December and although it sucks, I can at least put my mind at ease that it is not something else and am taking steps to ensure I get sleep exercise and balance. This has been the hardest part with a full time job and family. I hear so many depressing bad stories from those afflicted in Facebook groups and posts. It is so refreshing to read your blog and feel like I am not alone and remind myself that to some extent most of the time, I can choose how I will take the day. My bouts often last 6 or 8 weeks and can be debilitating and challenging for work. Particularly a long commute by car. Thanks for sharing your experience.

Steelyjan said...

Thanks for sharing your experience. Mine is almost exactly the same. 4 years of tests for a diagnosis that was bitter sweet. Every day is a challenge in knowing it can hit me anytime and that I cannot control it and it appears as an invisible affliction to others who do not understand. I have not found any meds that worked or that I could tolerate. Its more about diet and lifestyle. As a full time working mom with a little kindergartner finding balance is the biggest challenge having a professional career. At some point I will be faced with making decisions that can change the future but until them I am glad I am not alone in my fight.

Tania Fraser said...

Hello I have just read your blog and I have just been diagnosed with meniere's. I finding really hard to deal with, I'm so lost and i have so many question, its been really hard to get answer. Everyday that i can get up and still go to work is a good day

Nicole Bardon said...

Hi
I'm 37yo and have had this horrible disease for almost 10years. Oh and I'm also one of the lucky ones to have it in both ears.
I reached the stage where I had to give up my job as the attacks were so frequent that by the time one was finishing the next one would be on its way already.
All what you have said in the feelings are exactly me!
I have had surgery on both ears as it was not controllable by medication. My life was falling apart. I was constantly I'll.

So here we are almost ten years on, and I'm pleased to say, doing ok.
Some days are not so good still but good days out way the bad.
Sleep is the major trigger for me, well lack of.
I've lost 80% of my hearing in one ear and almost 50% in the other. I have the ringing , fullness, balance issues same as you describe.
But I can't ever imagine jumping on a trampoline ever again.

I'm glad your having a break from it at the moment. Let's hope it stays away.

Take care, thanks for sharing your story

Nicole

Dana Davis said...

Welcome to my blog, Steelyjan, Tania and Nicole. Thank you for sharing your stories with me. So sorry you've been diagnosed with Meniere's and hope you can find some helpful nuggets in my own story. I wish all of you a future "burn-out" from this awful disease!
Dana

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