Follow-up with ENT on my balance testing results today.

Basically, while my balance tested normal in each ear, there were abnormalities on some of the tests that indicate there is something not normal possibly with my left inner ear, but most definitely in how my eyes interpret information about my environment and communicate with my vestibular system and brain.

While the doctor didn’t want to say it was labyrinthitis, and thought it wasn’t BPPV-related, or give me any name for what damage or problem my inner ear may have, my vestibular therapist repeated on the phone today her opinion she’s had since my first visit with her in June: that my first flare of vertigo seven years ago could have been labyrinthitis, a virus that attacks inner ear, and that my brain, without proper and timely therapy, did not fully compensate after the injury healed, leading to chronic subjective dizziness or PPPD (Persistent Postural-Perceptual Dizziness). Throw in vestibular migraine, and the two work each other up in the face of multiple triggers (good & bad stress, food migraine triggers, too much or too little sleep, lights and environment, etc.).

Essentially, I keep doing what I’m doing, my vestibular exercises, work to reduce migraine triggers, and possibly go back to neurology for other approaches. I do not want drugs that have more side effects than my current symptoms. So, the test gives me information and validation, even if it doesn’t show damage that may have healed, it shows the after effects of a maladapted neurological system.  He couldn’t say it was solely migraine, and he didn’t tell me it was “all in my head”, he said there is something else going on, and that helps me feel vindicated after 7 years of trying to live with this disorder while looking outwardly healthy. I will keep on the daily fight, and I’m so blessed to have my therapist Julie on my side…she’s a tiger and fighter for her clients, an advocate who knows her stuff and pushes for her clients to be heard and treated.

Still a bit confused, still forgot to ask him some questions, still trying to interpret the vagueness of the results, but there are results in addition to migraine, and that’s something.

I have better days, then I have bad days. I’m keeping up with my exercises as best I can. I see my vestibular therapist every other week. I’ve progressed enough she ordered me to get a disco ball. Yup! Disco ball. My brain hates it, but it’s festive. 🙂

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23 thoughts on “

    1. Well, I will take you up on that when I hit the dancing stage! Right now, I get to sit, stand, walk, and turn my head while the lights are spinning. Only 1 minute of exposure a day right now, but I’m determined! 😎 I’ve got a few years of dancing to let out. It may not be pretty.

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      1. Thank you, Rita! Means a lot, truly. Gonna keep on going. I’m not one to give up…I’ve got a list of things I miss waiting to be checked off. I try to celebrate all the “little” successes, too, because some days they are huge events for my brain.

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  1. well, i can commiserate… as the result of infection in my left ear, I picked up Meniere’s disease (fluid in the ear drum) about 15 years ago, leading to ringing in the ear 24/7, vertigo attacks, and lack of balance (can look intoxicated walking down the street), and loss of about 80% hearing loss. Got just keep on keeping on.

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    1. Oh wow, I’m sorry! I know Meniere’s is a horrible thing. Have they been able to treat any of it? Does vestibular therapy help in a case like yours? I certainly know the drunk walking. It’s such a curse. Crazy what a stupid infection can to do destroy so much of our capacity to function.

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      1. Oh good. I’m glad. I can definitely say that the vestibular therapy has made a difference. Have to get the right therapist and be persistent with the exercises. If I miss my walks, I pay for it, too. Let me know how it goes!

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  2. So sorry, you have to struggle (still). I finally found the last piece of my personal puzzle, when it comes down to health. Besides being ‘in’ menopause a few years now (who thinks of that, at early 40, right?), I found out that my adrenal glands (hope that is the right translation) are exhausted, due to that menopause, hormones f*cked up and mental stress. Which is also a reason my tooth are decaying. Had to go true another emergency treatment (extracting tooth) today.
    Anyway, also have a long way to go to get my health back and I truly feel you dear Em.
    But we are both strong women, so step by step….sometimes two back 😉 But we will get there! Sending you a lot of healing energy and big hugs. XxX

    Liked by 1 person

    1. Thank you, Ken. Yes, indeed. It confirms what my therapist and I had suspected, so I feel relief and validation. Next is to finely focus my rehab and keep on with the exercises. Long slow road but I’m happy to know what I’m dealing with.

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  3. I’m so glad you are getting some info back about this even if it isn’t extremely helpful at that moment. I understand what a burden that has been to your daily life and I still hope you can get to a point where it is no longer and issue. All my best, Em 💙

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    1. Thanks, Dear Eric! It’s been a relief to get some more clues that I take as proof. I fee like I can get down to business, but first I’ve got some let-down to release after a 7 year build up. It’s been so tense with all the appts and testing and waiting for results…I need an escape, and break. Which is hard because my brain won’t let me forget it’s not working right. 💜

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