As The World Spins – Meniere’s Disease
All my life I’ve never had balance. As time went on, I just accepted that standing on one leg wasn’t every going to be something I was going do to. I’d do yoga and I best have something to put my fingertips on, or topple over I did. I’ve sprained ankles multiple times and loss of balance wasn’t something new. 18 months ago or so, I noticed that when I walk, I hardly ever swung my arms. I made nothing of if, who remembers how they walk? An interesting side note here, as part of my PTA program of study, we did gait analysis, in reading up on MD in later months, many MD patients hold their arms close to their body and have less swing than folks with a normal gait.
While away in Sept/October for clinical in Millinocket, Maine, I was teaching a patient how to balance on one leg and could hardly do it myself. This is about the time I noticed the odd on again off again hearing loss. It was annoying. I was listening to a TV show and would swap out earbuds to realize that I could hear nothing out of my right ear, the earbuds were fine, my ears were not. Again, I wrote it off, my dad is deaf, why not me?
This intermittent hearing loss continued and I ignored it. I’m in health care, we ARE the worst of patients and I had no insurance. I was not paying hundreds of dollars to figure out why I was going deaf.
Then, in January, in the middle of the night, I felt as if the whole room, dream and all, was on a roller coaster and I threw myself out of bed and scrambled to the bathroom, promptly vomiting. My head was pounding and I attributed this to the migraines that I would sometimes get. Two days of rest and I was fine. Again, sweep it under the rug.
This dizziness and full-headed feeling, the hearing loss only amped up from there, getting so bad at times that I could barely hear my charge nurse speaking to me “Sorry I’m deaf today” was my new mantra. By the end of February, I felt as if I were walking on the deck of a ship in the middle of the perfect storm.
Yet, when I drove, I was fine. Get out of the car and hello, back to Pirate Jack’s Black Pearl. Our Obama Care insurance kicked in March 1st and I made an appointment. I perplexed Jen, my FNP. We tried a few things, mainly Meclizine, and some of that oddness went away. The hearing loss, not so much. But I wasn’t on the Black Pearl 24/7 and started, in small little increments, feeling like the Jan of old.
A visit to the ENT and a confirmation of what I had thought it was, Meniere’s Disease. MD. A disease that is different for everyone, with of course, the standard symptoms, which, as standard as they are, still vary from patient to patient. After an MRI to make sure I didn’t have a tumor, we added a light diuretic to my med regime and I am doing my own balance and strength program, I am slowly learning to live with what could be a debilitating disease.
It is, however, a terrifying thing to know that someday I will be deaf in at least my right ear, if not both. That drop attacks could force me to stop doing the job I love. (I recently graduated as a PT assistant). That the underlying vertigo might come back and driving, walking the dog, and being productive might be a thing of the past.
People at work don’t understand that I can be 100% on Saturday and in the middle of the night my world turns into a tapestry of chaos where the world no long sits still, that I am on the equator of the world and we are going at 1000 revolutions a minute. That I feel as if I’ve been run over by an elephant on Sunday and my sole function that day is to eat and sleep and survive until the next and hope that Monday is better.
Every single soul with MD has unique symptoms. I have one that I’ve not heard of anyone mentioning on the message boards as of yet. Heat. In doing C.N.A. work I give whirlpools, the room can get up to 90-100 degrees of wet, sticky heat. But my residents are wet and naked, it needs to be warm. Slowly, each day that I do whirlpools, I feel the heaviness in my head begin and the dizziness start to creep into me. Whirlpool days are my FAVE day of the week. It’s the day I can pamper and I make it a spa day for my residents, with music and great smelling soap and lotions. But each time I do WP’s, I feel that anxiety ebbing into me, will I have a drop attack? Will I have a panic attack? I was doing WP’s twice a week, but this was bringing on attacks and forcing me to call out. If I can’t drive to work, that means I’m not well enough for work. How do we put into words that each time we push our bodies its making the attacks worse? Of no fault of the person doing my scheduling, but even if one WP is on Monday and the other on Thursday, the in between time isn’t a recovery period. I will never recover from MD, it is like MS or Parkinson’s or Muscular Dystrophy. I have it. I must make adjustments to deal with it, adjust how I work, how I move, how much I eat and drink. Sometimes this falls on deaf ears (pun intended) – they, people w/o MD, don’t “get it”. It is not a complaint. A fact of life.
Each day is a new little battle. I have found that a balance, cardio and strength routine at the gym is helping. I feel as though my recovery time after an attack is shorter and that my balance is far better. I know that exercise isn’t for everyone, but for me, it seems to help with the recovery time, not the attacks. As time goes on, I am sure I will learn more about this disease and how I cope with it and put a positive spin on a disease that keeps on spinning.
Jan Marie
Janet Marie Photography 