Turn It OFF! Tinnitus is More Than a Funny Word

Good morning!  I’ve decided to use my blog not only to writing, music, and other facets of entertainment, but, also to share my journey. I’ve had significant health problems for almost two years. Initially, my rheumatologist diagnosed me with systemic lupus (SLE) on June 19, 2013. However, the medication wasn’t working and I kept getting worse and developing new symptoms. So, after second, third, and fourth opinions, my neurologist believes instead I have fibromyalgia. 

In April 2014 I visited yet another rheumatologist who I hoped would be familiar with autoimmune disorders. Following an extensive intake during my initial appointment, I found a place where the doctor also listened to me. Based upon my blood work, the doctor believes I have Sjogren’s Syndrome. She also made the diagnosis of Fibromyalgia and pre-lupus. I’ve never heard of pre-lupus, but, hopefully it stays in the “pre” category.

Thank you for listening, each week I will have a new installment chronicling my journey- Which is now more frustrating than ever. I test positive for ANAs in my blood, but, the lupus tests are negative. There are several varieties of autoimmune disorders, with different caveats and health variations. Learning to live with the unknown has become my routine.

TINNITUS is more than a funny word…

Our family takes several camping trips per year. We love getting knee deep in nature and enjoying the beauty of the outdoors. The majority of the time we camp in tents. (the broad spectrum of pros and cons of tent camping could create an entire book- I’ll probably start a new thread on that someday) Anyway, we are all settled in one night and drifting off to sleep when my five year old niece yells, “Mom, turn it off!”


It took us a moment to figure out she was demanding we silence nature – the crickets, frogs, cicadas, etc. We had a full laugh over that one. She begrudgingly stopped crying and finally went to sleep. It makes sense to us as adults that some things we just can’t turn off with a switch. But, when logic strays far off the reservation of reason, I feel so much like a five year old.

I’ve had an incessant ringing in my ears for the past eight years or so. It began gradually. One day I noticed the sensation and likened it to a sinus infection, allergies, congestion or whatever. Rapidly, the noise became louder and louder to which I received no relief. I even attempted to participate in a medical study for tinnitus. (I was rejected from the test group for answering yes to occasional feelings of anxiety. REALLY, ya THINK? You have 24/7 ringing in your ears and tell me you wouldn’t have bouts of anxiety too.)

The tinnitus began a few years before the other physical symptoms began. I also suffered some severe vertigo that an ENT physician diagnosed as BPPV. Benign Paroxysmal Positional Vertigo (BPPV)* – Anytime I would look up I became obnoxiously dizzy and nauseous. It scared me, but after a few simple doctor recommended home treatments, it finally went away.

However, the tinnitus began around the same time. I have times when the ringing softens and fades some, but, it never completely goes away. Mayo Clinic - Tinnitus

There are some medical studies that support tinnitus as a symptom of fibromyalgia and other autoimmune disorders. However, there are conflicting reports that claim the two are not related at all.

I realize that over the past few years is when my autoimmune diseases surfaced more prominently. However, I’ve had other slight symptoms, such as the tinnitus/hives/anxiety/chest pains that were present long before I reached full blown flares and a diagnosis.

I must believe that inflammation in my inner ear is causing the ringing reaction. I will continue my research and hopefully find some answers. But, as many of you are well aware, finding an answer is not always easy and it takes perseverance. Sometimes, it’s all I have to get up in the mornings, but, I can’t just give up. Maybe I should say, I WON’T just give up. I want to feel better again.

*According to Web MD- Benign paroxysmal positional vertigo (BPPV) is caused by a problem in the inner ear. Tiny calcium "stones" inside your inner ear canals help you keep your balance. Normally, when you move a certain way, such as when you stand up or turn your head, these stones move around. But things like infection or inflammation can stop the stones from moving as they should. This sends a false message to your brain and causes the vertigo.


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