Meniere's is unpredicable scary.
Well, unknown to me it started before 9/2017. One I used to get car sick as a kid. I used to get sick on rides at fair. I used to have migraines with vertigo and vomiting as a teen. Then at 46 years old I just thought my cheap work computer was shorting out my plug in ear buds, but only the right side every time. I didn’t realize it was MY hearing going in and out. I have a injured back with herniated discs so I thought that was causing balance issues. and the rare small dizzy spells I was having at the time, I thought were stress related. I knew my dad had hearing issues and had other issues but never knew he had Meniere’s Disease in both his ears. (My poor dad) Well one day at work I started to feel really bad as I kept looking from my paper work and up at my computer. Everything started to look like I was looking through one of those huge tanks at the Aquarium, distorted and kind of blurry! I was under a lot of stress and hadn’t been sleeping well, my mother passed less than 2 weeks prior, and no we were not close, but that is another story. So I thought I would just excuse myself and go home as I live across the street from my work’s development. As I started walking I got more concerned as I got more dizzy and nauseated, I made it to my car and called my partner and told her something was very wrong. I don’t know if I can drive. Then at that moment my boss knocked on my window, he smokes so he must have watched me walk to my car right there up front in the handicap space, and as he ask me “Mel are you ok”, I vomited on his feet and he said “I guess not”. I could not stop vomiting and spinning at this point. They called the ambulance, I went to the ER I am still spinning and now dry heaving as the ambo guys gave me nausea meds. They ran bunch of tests and 6 hours later, the spinning stopped and doctor came in to release me and said it appears to be something from my ears. So after being tested, OMG the testing is horrible, over 6 hours, diagnosed at ENT with Meniere’s disease in 9/2017 it has been a rollercoaster. I take Antivirals, RX antihistamines, water pills, daily to prevent episodes, and have the emergency meds for vomiting and dizziness. Problem is vomits pills dissolve under tongue, but dizzy pills have to be swallowed. Well try not to OD on those puking them up and having to retake them over and over for hours. Sometimes I was only having 1 episode a week or every 2 weeks or sometimes having clusters of daily episodes! Was given oral steroids, nasal sprays. Tried allergy shots, that was a mistake!! After leaving one of them I had a very bad episode while DRIVING!!! Very scary! I have had another driving episode, so I try to always be on the right side to pull off. It has given me much anxiety to drive at all.
Last year, 2023, was the worst year of my life. My 2 boy cats were both sick and dying at this time too. Starting in April for some reason, I started to have episodes daily, sometimes a couple times a day no breaks at all, my ENT who is considered one of the best, started to give me dexamethasone injections in my inner ear. Yes they hurt really bad, taste bad and immediately put you in spins. Was doing that weekly trying anything to get these episodes under control. Well it did help lessen the length of them, instead of spinning and vomiting for hours it might have brought it down to an hour an episode. In June I lost my oldest boy cat. Then something really scary happened in August of 2023, I had my 1st DROP ATTACK!!! So, so, scary. It is hard to describe them. Sometimes it feels like someone really strong is just putting all their weight on you until you crumple to the floor, while having a different kind of vertigo, and yes you are awake, like fainting while awake with vertigo. This vertigo makes it feel like YOU are spinning not the world around you and you are immobilized. I could not crawl like I could during a regular vertigo attack. Other drop attack I was told I looked like I was hit by a football player, or a tree falling. But anyway I had about 16 of those and yes my bones still hurt. Had to go on short term disability. You cannot drive if you are having these as you have zero control of your body! So had to take cab to doctor daily… They had to do a chemical labyrinthectomy, which is where they inject gentamycin in your inner ear DAILY until they achieve the results they are looking for. It is awful you are stuck in a nauseated drunken state until ear absorbs fully and begins adjusting. I had to use a walker during this time. And you thought your balance was bad before… During this time on short term disability I lost my other boy cat. Nothing like taking your cat to be euthanized in an uber. UGH! I am still kind of in a limbo. Waiting to see if this is going to maintain and hoping I do not get it in my other ear, like my dad. Doctor told me if it comes back my options are limited. Not what you want to hear.. But terrified of another drop attack. I still have tinnitus, fullness of ear and head, migraines, severe balance issues, occasional dizziness, but trying to hang in there. I am hoping I will not reflare up and have to have the surgery, as they have to cut the skull behind the ear to remove the inner part that sends the signals to your brain. Which yes has side effects as well, and one has to worry if doctor sneezes at the wrong time you then you just got a lobotomy! I feel for all my fellow vestibular people out there! Please stay safe and take care. (P.S. last year my ENT’s office put up a sign that actually read “Happy Fall” like really people! your name is Tampa Hearing and Balance, and 1st thing you usually ask is when was the last time you fell?)