Welcome to MyDizzyLife.com. Thank you for visiting. My name’s Lisa and I was diagnosed with Meniere’s Disease in March, 2021.  Although it first reared it's ugly head 17 years before my diagnosis. 

My first attack woke me out of a sound sleep in the middle of the night in 2004.  The bed, the room, everything was spinning. I mean, really spinning, like nothing I’d never experienced before. I woke my husband saying, “something is really wrong.”  I thought I was having a stroke, honestly. We made our way down the hall, me literally bouncing from wall to wall, into the restroom, where I was immediately ill. I couldn’t even look up, or speak without being sick. I sat there on the floor for hours, with my red bucket, all the while feeling like I was on a tilt-a-whirl that would not stop...and scared to death.

The doctor told my husband to give me Benadryl and Dramamine.  I eventually made my way back to bed, at dawn, trusty bucket in hand, and drifted off to sleep in a somewhat seated position.

After 24-36 hours and several doses of Dramamine, all was well with the world. “Wow, that was weird! What was that?” Our doctor surmised it might have been an allergic reaction to all the bing cherries I ate that weekend. So, I stopped eating bing cherries.

It never happened again...until...

Work. 2019.  Seventeen years later.  (It wasn't the bing cherries!)  Talk about your coworkers seeing you at your worst! I noticed I was having a lot of trouble hearing over the phone that day and my ears started feeling very full…like I was on a plane or under water. I went in the conference room, closed the door, and tried to do the Epley maneuver lying on the long wooden table.  (I was familiar with it, as my father has had bouts of vertigo throughout his life.) However, the Epley maneuver didn't help...at all.  It actually made me worse. 

Long story short, I ended up in an ambulance that day. Rightfully so, neither I nor my employer knew what was happening to me. Unable to speak, head in a trash can…not pretty. I was scared. Again, I’m thinking, “what is happening? Is this a stroke?” Sidenote, I will forever be grateful to my boss who followed me to the hospital and stayed until my son arrived a couple of hours later.  I was treated with large doses of intravenous, you guessed it, Benadryl, sent home with some Meclizine, and recovered.

However, the attacks became more frequent and more intense. About every 4-6 months. Horrible in the moment, and then forgotten in between time. I began to notice the whooshing sounds in my ears. I used to say to friends, “can you hear your pulse in your ears? If I turn my head to the left, I can…weird huh?”  They gave me the eyeroll and yes, they thought I was weird.

Whooshing eventually became a low grade, constant ringing on the left side. I ignored it. “Concert ears” I told myself. Then one day in 2020, while I was out running, my right ear bud fell out. I realized I could hardly hear my music in my left ear. “Oh great, now I’m going to have to get new ear buds.” But for some reason, a little voice told me to put that left ear bud in my right ear…and you guessed it…I could hear just fine.  My left ear was the problem...not the ear bud.

So, of course, what do we all do? We go to the ultimate diagnostic tool known to modern man…the internet. "Dr. Google."  Dizziness, check. Ringing in the ears, check. Hearing loss, seems to be, check. I told my sister, “I have a terrible feeling I have Meniere’s Disease.” “Don’t jump to conclusions and self-diagnose,” she said. And so, I did nothing.

I didn’t have very many attacks throughout the fall and early winter. I was only experiencing the ringing and sound distortions. And yes, I put off going to the ENT for probably another 6-7 months. But by February, early March, 2021, I began experiencing some whopper vertigo attacks, at greater frequency. I began missing important events. It was now affecting my day-to-day life…not every day…but enough to scare me into action. 

I went to the ENT, told them my story, and was immediately sent for a hearing test. You remember the ones when you were a kid, when you sat in the little booth and raised your hand? That one. And I did great!  A friend of mine happened to be administering my test that day. I came out of the booth and she just smiled…you know, that smile.  She couldn’t say it in words…it was not her place to diagnose me. She said everything with her eyes. She new what she saw on my test results. Guess I didn’t do so great… I had the classic pattern of Meniere’s Disease. The loss of low and high pitches in the affected ear.

A doctor (that I will never go see again) told me basically, without even sitting down, by the way...yep, it’s Meniere’s, there’s no cure and you’ll probably lose your hearing. Decrease your sodium intake, here’s a handout about potassium, and the best line ever…"stay off the internet"  Wow, seriously!?  Thanks for the bedside manner!

I set out to learn everything I could. And I found a lot of scary stuff out there in those first few days. I sat in my chair, where I journal nearly every day, my happy/peaceful place, and sobbed…maybe even wailed…I know that sounds dramatic…but probably accurate. What did this mean? What would happen to me? What if I can’t drive? Can’t work? What if I fall? (My iron and slate coffee table was looking pretty threatening all of a sudden!) What about my social life? I just have to “live with this”? I had my good cry and then said, “okay, well, here we are, this is what we’re doing now, I guess. Just "live with this"?  No way!

I found two Facebook support groups full of kind, sympathetic, supportive souls. There were some scary stories there too, along with lots of encouragement, debate about therapies, diets, treatments, and medications. I’ve learned a lot. I’ve researched, I’ve read, I’ve experimented with my own diet. I’m still experimenting. I’m slowly learning what is working for me. And probably the biggest thing I’ve learned, we’re all different!

The real treasure I've found are the people...the Meniere's and vestibular warrior community...sharing their stories, personal experiences, the big and little daily victories. Positive encouragement. And that’s what brought me here. If you’re reading this…wow, yay, you got this far, thank you! If I can help you feel like you’ve got a friend out there that totally gets it, that you’re not alone, if I can help you learn something new, share resources, give you new ideas, help you feel braver and more empowered, or just plain lift your spirits on a bad day, then that makes me happy too!