Inner Ear Problem for Eight Months - Vanderbilt Patient
I was just checking to see how many people have similar experiences to mine and if any one might be able to shed some light on my affliction. I have a long post to type, so thanks in advance for reading:
As of the writing of this post, I am a 31 year old female (just had a birthday.) I am married with no children. I am healthy except for my weight (big fat fatty.)
In March of this year, I was feeling my best. Working out with my sister, making good food choices, and doing positive things for my mental health. I was coming out of a bad round of anxiety caused by Seasonal Affective Disorder and Scrupulosity (a form of OCD involving moral/religious obsessions.) My decision to follow a healthier lifestyle helped me combat the negative effects of a rough, emotional winter.
Then, around mid-March, I came down with a bad cold. I couldn't work out and I was pretty sick with congestion, sore throat, etc. I had trouble sleeping and was light-headed. After a week, I finally got better and thought no more of it. But then, a few days later, while getting ready to leave work, I felt sick to my stomach, woozy, and as if I could no longer stand on my own two feet. I had to sit down and lay my head on a desk before going home.
I kept having these spells, actually blacking out at one point. I was unsteady and having trouble concentrating. I decided I must be having iron, blood sugar, or blood pressure problems. I called my family doctor but had a hard time getting anywhere. One of his staff treated me as if I were an annoyance...or a crazy person...and kept putting me off appointment-wise. I suppose she recalled my winter freak-outs and thought I was imagining my problems. Sometimes, I almost agree with her.
On my aunt's advice, I finally went to the ER and was given a chest X-Ray. I had a round of tests that included: blood work (thyroid, iron, sugar), kidney function (along with pregnancy test), blood pressure taken in 3 positions, and EKG. Everything was spot on, with the exception of a low-grade fever. The ER doctor asked me to follow-up with my family doctor as I could have a long-running virus.
Hearing this, my family physician's office arranged to have me come in the following day. I spoke with the nurse practitioner who decided I could be having vertigo as a result of my cold. She put me on 75 mgs...THREE DOSES...of Meclizine a day and asked me to follow-up with my family doctor in two weeks.
I might as well have been taking air pills for all that the Meclizine helped. It didn't do a thing. It didn't even make me sleepy. My family physician was concerned about my imbalance and he referred me to a neurologist (I later discovered that my Doc thought I had MS.) The neurologist, after evaluating my balance and speaking with me, did not believe I had anything worse than BPPV or Labyrinthitis. He did an MRI w/o contrast to make sure and then sent me to the University of Tennessee Balance Center for rehab/treatment.
My physical therapist did the Eply maneuver, and tried to treat me for BPPV, but my symptoms did not include true vertigo. She then had me do several weeks of eye-head coordinating movements to treat Labyrinthitis. When that didn't work, I made the choice to go see an ENT at UT myself. While waiting for to go to that appointment, my neurologist put me on Topamax for possible Vestibular Migraine but I never saw him after the initial visit because I wasn't "sick enough" or dying and couldn't get on his calendar.
I finally saw an ENT. I had a hearing test. Normal. I had a VNG and ECOG. Other than a 21% weakness in my left ear (supposedly a low number), all tests were fine. No sign of a Labyrinthitis so my ENT took me off the Topamax and put me on Elavil and a diuretic. He thought I might have Meniere's and that it wasn't presenting as typical Meniere's.
After over 5 weeks of taking the prescribed meds, I began to feel worse. My ENT brought me back in and was clearly baffled. By this time, I am walking with a cane and not driving. I asked the ENT if I was crazy. Could I be imaging this illness? He didn't think so, and, to my surprise, referred me to Vanderbilt U in Nashville. He also gave me a patch for motion sickness (which made me thirsty and sleepy...and that's about it.)
At Vandy, I had CT scan w/o contrast, an MRI w/ contrast, the rotator chair test, a VNG, and another ECOG. Vandy said I only had a 6% weakness in my left ear, but that one of the bones in my canal was thin and that I was sensitive to certain pitches in sound. Still, no clear picture of my problem. So, in an effort to help, my Vandy doc sent me back to UT for 3 months of continuous Vestibular Therapy.
Given a free reign and the rare order to treat me for 3 months, my therapist determined that moving my head up & down seemed to be the motion that made me the most sick. She blamed the "utricle" in my left ear. I am now one week in to therapy. I have three exercises repeated 3x daily. I also do low impact work-outs with my sis 3 times a week.
As of right now, I've had two really terrible days this past week where I was afraid of standing. So therapy hasn't kicked in yet. If it doesn't work, back to Vandy...
My symptoms include:
~A sense of imbalance or swaying. An uncertaintanty about my footing.
~Occasional spinning (as if I am spinning. Not the room.)
~Sometimes I feel as if I am shifting...or the room is shifting...when all is still. Or I feel as if I am tilting.
~Inability to ride in a car without getting sick (and I'm a hillbilly. This never used to happen.)
~Lack of concentration
~Heavy head - brain fog - hard to hold head up
~Sensitive to certain sounds, easily startled
~Have lost balance and fallen
~Symptoms increase with exertion, fatigue, getting hot, looking up or down, bending over, riding in car, walking, loud noises.
I have no headaches, my vision is good, etc. I can look at a computer screen and I have no problem watching most TV programs unless there is an object swaying or spinning on TV.
Anyone been in the same boat? I've researched BBPV, Labyrinthitis, Vestibular Migraine, Meniere's Disease, Superior Canal Dishecense, Acoustic Neuroma...the Superior Canal Dishecense sounds a bit like it, but still, nothing jumps out at me.
I'm sad. Sick. And worried that I'll be like this the rest of my life. And still, sometimes, on a rare good day, think I'm imagining it all.
You are not alone. I have 80-90% of your symptoms and mine happened because of a mild traumatic brain injury and they call it as Post Concussion Syndrome. I have been living with this for 2 and a half years and have seen millions of doctor, MRIs, test, meds etc.,
Few things which helped me:
1. Xanax (very addictive and body can get used to it quickly)
3. Vision therapy.
All of them temporarily relieves symptoms and infact things got worse last week and so thinking about going back to Xanax.
Yes it is tough, tough to live with and robbed my life. Let me know if you find anything.
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