A Meniere Syndrome story

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I was around 14, 15 years old when it started. 

After a year of dizzy spells that would literally knock me off my feet, ringing in my ears, and not hearing everything that went on around me, at 16 I was diagnosed with bilateral cochlear hydrops. Ménière's disease in both ears. 

My diagnosis went a lot faster than most people's would have, my family was involved with a Deaf branch of the Church of Jesus Christ of Latter-Day Saints at the time. We were aware of my hearing loss, and wanted to learn sign language together. One of the Deaf Elders in the branch was told of my symptoms and told my parents to urgently have me tested for Ménière's disease. 

I suffered for years with debilitating vertigo. I had to sleep the attacks off. I struggled with fear of the attacks while driving (thankfully it only happened twice and I was able to safely pull over), working, and just about everything else. I used to freak everyone out because my eyes would 'spasm' back and forth across in their sockets. I would be walking across a room and suddenly just hit the floor when a vertigo attack would hit. I was helpless, literally helpless. 

When I was 27, I got pregnant with my daughter, I had my last vertigo attack when I was 4 months pregnant with her. The doctors call it Ménière's disease burn out, though I still don't fully understand what it means. 

Recently (I'm 35 now), and the ringing in my ears has come back with such force that I'm going nuts! It had settled down for a while. I have two biological children and four step children now, and it's so unbelievably hard to understand what they are saying to me most days. 

I have hearing aids, but I dislike wearing them, for many reasons. One: the cheap butterfly shaped ear inserts hurt, Two: my kids can be LOUD, and Three: they are almost never at a correct level because my hearing fluctuates at times.  :(

The doctors told me I would be deaf before I was 30 at the rate my hearing seemed to be dropping, but at 35, my hearing loss has slowed to a trickle of loss from what I can tell. There are times I can barely hear my own voice. I am about half deaf in both ears now at 35  

ENT's and people who work at hearing aid centers love to test me. No one fully understand Ménière's disease.