Thursday, January 10, 2019

Living with Ménière’s 

      My friend Julie White and fellow Ménière’s Warrior from Twirly Girl Art sketched this to show what we go through. She’s an amazing artist. Check out her page. 

I had hoped that the water pill would help decrease my vertigo. I did have some reprieve, but January 4, I had a small attack. It was strange because though it was brief (only a few minutes) I felt as if I was in the after effects of a major attack. Mine usually last for hours.  


I screenshot this from my video after the attack.

Since then I have a general light headed feeling and dizziness. Trying to pick up the dog toys yesterday caused vertigo. It’s frustrating and I feel incompetent or is a better word impotent? 

I am trying to persevere though my head feels heavy. My ears (tinnitus) is super loud and the tones are constantly changing lately. I can deal with the cicadas that never shut up, but not the whirring or test tone noise that keeps popping up. I feel I need to say that I am not suicidal. 

This disease keeps changing on me and it’s difficult to get a handle on it. It’s totally unpredictable. My husband asked, “Do you really think that you could fall in public? My answer is, “I don’t know? It could happen.”

What I do know about it. In the past I have been slammed backwards without warning in public or at home. It’s sort of like the drop attacks except that wall or risers at the store have broken my fall in the past. It’s violent and quick and comes on without warning. The last time I had one was in May before my full blown vertigo attack. That time I did fall because our bathroom is big and I missed the wall. 

I was trying to tell him the benefits of getting me an Apple Watch Series 4. I have been preparing for the days when this disease is bad. I already use a cane on off balance days. I bought a walker with a seat to assist me if things get worse or a lot of standing might be involved. I have yet to venture out with it. 

It relieves my mind to be prepared. Taking away some of the anxiety about a disease so unpredictable is a good thing as anxiety can exacerbate the symptoms. It’s one of my main triggers. 

Each of us have different triggers. There are some things the doctors find many have in common. Alcohol, salt, stress are just a few. Alcohol is not a trigger for me, but salt makes my tinnitus scream. It doesn’t seem to cause a vertigo attack. Stress/anxiety does, so I try to avoid it. 

It’s finally a blue sky day. We’ve had variable air pressure, rain and clouds for awhile. I hope I will get back to normal for me soon. Normal is tinnitus and balance issues. Even when I was in remission, these never went away. 

I could use some peace and quiet, but fear even when I go deaf I will never have silence. The two things I knew about Ménière’s is that I would eventually go deaf and totally lose my balance. I have since learned there is no time table for this. It varies for each individual. There is no cure. Only things they can do to alleviate symptoms for a little while. 

So, here I am trying the diuretics. They were helping or may have been a placebo effect. Now they aren’t. The ENT said the next step would be to try steroids. I am thinking the injections, but she didn’t really say. 

We’ll see. Like I said most remedies are only temporary. But even a few weeks reprieve was better than nothing for me. 

     Also by Julie White. 

I hope you are spin free. 

Love, Peace and Light! Rita

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