Ulog 112: Living With An Auto-Immune Disease- Coping With Changes

in #powerhousecreatives5 years ago (edited)

The first question I always get is...

What is Meniere's Disease?

To put it simply, Medical News Today says this:

Ménière's disease is a condition characterized by vertigo, tinnitus, and progressive deafness. There is no cure, but there are some treatments that can ease the symptoms
According to the National Institute on Deafness and Other Communication Disorders, approximately 615,000 people in the United States have Ménière's. The disease can develop at any age, but most commonly appears between the age of 40 and 60 years and normally only affects one ear.
Ménière's disease is caused by a dysfunction in the inner ear. The labyrinth is a system of small fluid-filled channels that send sound and balance signals to the brain. It is an unpredictable disease that requires various types of treatment

But in reality, there is SO MUCH more to it than this.

There has always been a debate about if Meniere's Disease is an auto-immune disease... or not.
My ENT (Ear Nose and Throat) specialist stands behind that Meniere's is in fact an auto-immune disease; more or less because an auto immune disease is defined as an illness where the body attacks itself (think Multiple Sclerosis)

is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.

Your body stands in the way of your life, quality of life and attacking itself making life almost intolerable.


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For decades I have been in between Stages 1 and 2. I get violent vertigo attacks, severe nausea, extreme fatigue and tinnitus (ringing in the ears to the point it has become part of who I am). But this past week I have noticed slight changes, new symptoms and more confusion (in my brain).

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While I have suffered from all of these mentioned symptoms at one point in time over the last 30 years, some new changes are effecting my life even more.

  • The new thumping in my ear. Ever been in a vehicle and someone has the back window rolled down? And you hear this _thump... thump... whomp... whomp vibration that is completely annoying? I get that on a daily basis now even when at home... sitting... relaxing. It hasn't totally replaced the tinnitus, it has enhanced vibrations in my head and ear.
  • My balance when walking has deteriorated. When we went to a flea market last week, I really took notice of it. We'd be walking down an aisle, shopping and browsing and all of a sudden I'd misstep, stumble and have to reach out and catch myself before actually tumbling downward. I have feeling some people may have assumed I was drunk.
  • My cognitive thinking has diminished. I am having memory issues. I can't find the correct words when speaking and I have always been known for my articulation. Even writing posts on steemit and SMOKE.io are taking me twice as long.
  • I just had my eye exam two months ago and my vision is becoming more blurred. I am, and have always been, far-sighted, but now I am having issues reading large print further away. I'm actually afraid to get behind the wheel to drive right now.

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  • Sometimes when walking, it appears as everything is moving in slow motion.
  • While I am fatigued, more like exhausted, I am having restless night sleeps. The last two nights I have been waking up at least six times. We have Fitbits now and I checked my daily sleep times (deep, light and waking up times) and I am averaging 34 minutes of deep sleep. Not good for functioning on a daily basis.

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This all has me so concerned that I have an appointment with my ENT (but not until August- he is a busy guy) for my yearly exam, follow up and review. I have learned over the last few decades to just suck it up and live with it all the while not allowing the Meniere's Disease to become my identity. It is a struggle most days, but I try my best.

Oh yeah... did I mention depression and anxiety go along with this disease? YUP- sure do!

My primary care physician is NOT a fan of Xanax, so he removed me from that prescription (which my ENT calls my escape pill); meaning when I feel an episode coming on, I take the pill and it will help me relax. I tend to get anxious when an episode is on my horizon.

I have also started consuming cannabis on a weekly (sometimes daily) basis to help keep the anxiety under control. Two years ago I was only a grower of cannabis, now I am a statistic of marijuana use for medical purposes.

This disease has changed my life over the last few decades and when I have an episode, I sleep. I sleep a lot, and end up losing a day, sometimes two, of my life. I have missed family gatherings, try to avoid crowds of people as the commotion is unsettling for me and I have introverted even more.

And now with these new symptoms and changes, I am very concerned about what will happen over the next few months and years. My right ear has severe hearing loss (80 dB/3000 Hz) at my last recorded hearing/audio testing. I'm now curious as to what it will be at the next one. My left ear's (moderate) hearing loss is 55dB/2000HZ; so it's not far behind.

Most people are uni-lateral; whereas I am bilateral. Meaning both ears are effected by this disease.

My first indication of having this disease was when I was a teenager in the 1980's and doctors thought I had TMJ (temporomandibular joint) in my jaw which was causing headaches, ear pain and balance issues. I spent thousands of dollars as a young adult to get orthodontic (braces) treatment only to find out it was useless.

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This post was made from https://ulogs.org

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Having a chronic illness like this really sucks. It ruins your quality of life. I am glad you keep trying to do things you love, as much as you are able. :))

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Oh my word, @goldendawne howe debilitating. I didn't realise that Meniere's could be chronic. My father that a bout of it - he must have been in his 50's and we thought it was a once-off. With hindsight and having read your story, I wonder if he hadn't had it virtually all his life. He was deaf in one ear and had a bit of tinnitus. It was ascribed to his having had a TB-infected gland removed from his neck as a child, so he just lived with it.

I hope all goes well with your check-up and that you feel better.

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