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My story (new here) - feeling so overwhelmed and confused

Discussion in 'Your Living Room' started by crimsonfalcon08, Nov 1, 2020.

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  1. Nov 22, 2020 #21
    Simonetta

    Simonetta New Member

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    Nov 21, 2020
    Orlando, FL
    I am sorry you are going through this. I am going on 6 years. I was in your exact shoes when I started out. Except it took 7 months to find my diagnosis. I went through ridiculous testing after my 1st ER visit. My initial attack was a drop attack, I could not lift my head for 2 days, very scary. But now I have learned to accept the disease. I know it will not kill me. It is manageable. You will need to make several life changes. I am an athletic but I had to tailor my regime intake. Yes, sodium, sugar, caffeine, alcohol, chocolate and stress are all triggers for me. I buy everything fresh. Work from home, limited driving and walk alot! I take medication, have undergone vestibular physical therapy (did not work for me), gentamicin ininjections etc. Everything but surgery. I do botox injections for the migraines that I have now. You will get through this! It sucks but it is just a new way of life. Trust me I was just a typical high school cheerleader who was basically benched when this happened. I mourned awhile then got up and moved on. Never stop searching for answers and DO NOT LET ANYONE TELL YOU THIS DISEASE IS THE END OF YOUR LIFE BECAUSE IT IS NOT! YOU ARE GOING TO DO GREAT THINGS. TAKE ❤ CARE. Simonetta
     
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  2. Nov 23, 2020 #22
    crimsonfalcon08

    crimsonfalcon08 New Member

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    Nov 1, 2020
    Thank you! I'm definitely getting to a neurologist as soon as I can, as I'm concerned about the larger pineal cyst I have and if it's the root cause of my issues. One that was highly recommended to me isn't available until early March, but thankfully I was able to schedule a visit with another one (who also focused on vertigo-related issues) in mid-December.

    Thank you to everyone else who's replied as well, I appreciate your advice and thoughts!I don't consider myself as being diagnosed with Meniere's at this time. I know Meniere's is a diagnosis of exclusion, I know it mimics many similar conditions, and my #1 focus right now is being my own advocate and doing what I can to figure out my own root cause, which brings me to:
    • I've already seen two ENTs and one neruotologist. I've had two hearing tests, one totally normal, one with the minor issues with a couple of frequencies that I mentioned. I've also had a VNG and ECoG (both came back as normal) and an MRI (when the larger pineal cyst was found).
    • Next, I'm seeing a neurologist mid-December to hopefully get to the bottom of this pineal cyst issue.:(Also in mid-December, I'm getting my regular physical done with my PCP (I'm also asking her, among other things, to test my blood for any autoimmune issues, as that's something I'd like to rule out), and I'm also going to a Blair chiropractor. Getting an allergy test is also on my radar I want to explore the TMJ option as well, but I'm saving it for after I try the above first.
    I'm still nervous, and as you all well know this is a stressful process in general, but I'm trying to do whatever I can that's within my control to get answers.
     
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