Finding My Triggers

If you know me, you know I suffer with a vestibular disorder. It all started in 2016 when I began having loud ringing and fullness in my left ear. A couple weeks later I woke up one morning and the room was spinning. I was sweating so bad that my clothes were soaked. My husband helped me to the bathroom where I spent almost 4 hours throwing up and dry heaving. I was not sure what was going on. I figured It was the way I slept or something I ate. After the episode, I slept most the rest of the day. I was exhausted. I have only suffered 3 of these violent attacks. All other times, I am just light headed and always feeling on the verge of a vertigo attack. It’s crippling. 

I have went to the doctor about it and he suggested it was just allergies. He sent me to an ENT. There, I was quickly told me that it was not allergies. They did the hearing test, checked inside my ears and asked several questions. I checked off all the boxes as having Meniere's Disease but they would not diagnose me with it until I went through a series of testing. After learning there is no cure for it, I refused all the expensive testing. So here I am without closure to what I’m going through. No one can see it and I don’t look sick. It’s now sort of just a my secret invisible illness I keep with me.

Two years ago, my symptoms, except the ringing, stopped all of a sudden. I thought I was free and could live normal again. Until it flared back up just last month. I have not suffered the violent vertigo attacks, but the anxiety I get from the fear of it happening at work or while driving keeps me on edge.
The Tinnitus (ringing in the ear) is constant. Sometimes it’s low, sometimes it’s high. I also have lost hearing in my that ear. All I can hear from my left ear is the ringing and whoosing sounds that come from within my head.

It’s weird that even though I lost hearing, I am super sensitive to certain sounds and tones. Restaurants are the worst for me right now. All the background noise causes to much stimulation in my ear and I feel like my head is closing in and headaches start. Same goes for any place I go where there are multiple people talking. It’s miserable. Sound sensitivity is a new one right now. 
Is it sounds that trigger my symptoms?

I notice on rainy days I feel worst than when it’s a sunny day.
Is it the biometric pressure triggering my symptoms?

While listening to Meniere’s Muse podcast, I heard a guest mention that WeatherX earplugs were a big help for her. They look like normal earplugs but have a small piece of ceramic inside that protect your ears from pressure changes in the weather. There is also a WeatherX app you can download and it will notify you when there an incline or decline in pressure so you can pop the earplugs in. 
Why not try? It couldn’t hurt.

Did they work for me? 
Yes. They are a win win. I think they work for both weather changes and sound. When I feel pressure building up in my ear and head, I put them in. However, the app is no use to me as my body tells me when to put them in. They do not completely close out sound, so I can still have conversations with people. They block out a lot of background noise and make me feel comfortable and in my own little zone. Now I do not have to stick my finger in my ear to balance out sounds. Listening to the paster on Sunday was a lot more comfortable. 

I have come to the conclusion that I will continue having bad days and good days so I try and make the best of it. I have hopes that It will go away again since this time isn’t as bad as it used to be, maybe I will grow out of it. 
I am learning to handle the episodes of lightheadedness and pressure by trying to relax and accept the fact that its just part of me now.
I have decided to just live with it and stop feeling sorry for myself. I’m tired of explaining to people how I feel. Unless they have had this condition, they will never understand. I plan to make some healthy changes in my self. Now if I can just find my triggers. I can do this.

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  1. I'm sorry you are having this trouble, but grateful for the earplugs and relief when it flares up so bad.
    Here's hoping it goes away again and soon!
    At this moment and all the time if I think about it I hear I guess it's ringing sounds like loud crickets in the woods for me. Glad you talked about these ear plugs they may help me. Thank you and sending prayers and love.

  2. My grandmother had that same problem. She went through all kinds of tests. They never came up with anything besides round after round of antibiotics. I'm glad you found some relief. I know it was misery for her.

  3. WE have always been amazed at what you can do with your FINGERS, you are amazing. BUT YES, it is hard to explain problems of health that are not seen. Also impossible to EXPLAIN to someone who has not experienced it.
    For years I have had tinnitus, ringing in my ears. I actually thought everyone had that ringing. I even got so used to it I did not think of it until a Navy Doctor told me it WAS NOT normal. LOL The implants I have now eliminate all but a small buzz.
    I am glad you have found some relief.
    Love from this side of the South Fork...(for another few days)
    Sherry & jack

  4. So sorry you have to deal with this illness. Glad to hear that the ear plugs provide some relief for you.