Something is Actually Wrong!

That title probably sounds cheerier than I meant it to.  But for once, something is physically wrong with me and it’s not “just anxiety”.

For those of you who don’t care about the long version I’m going to condense under a “read more” regarding how we finally got to the diagnosis, here’s the short version: I have vestibular migraines and now I have to have physical therapy to retrain my brain to function without input from one inner ear.  I am retraining my balance and gait as well.  So far I’m doing eye and balance exercises.  Still a long way to go.

  • April 1st – Start taking Prednisone for a foot nerve/aggravated metatarsal issue.
  • April 2nd – Huge vertigo spell leaves me screaming on my floor for help.  Lasts hours.
  • See ENT because we think it’s ear related.  He tells me to discontinue Prednisone.
  • I am given a referral to have an MRI and see a neuro-opthalmologist.
  • Meanwhile I have symptoms that feel like I’m on a rollercoaster flipping and corkscrewing and diving down and I’m not even moving.  I can’t balance on a toilet, can’t stand in the shower.  I have to lean on people to walk places.  I can’t even sit.  My hips and legs feel like they’re flailing.  The room feels like it tilts.  I feel like I have a magnet in my spine.  I’m a fall risk.  Even dizzy in bed.
  • 1st neuro-opthalmologist I see is an ignorant moron full of stigma: After keeping me waiting for 50 minutes, she comes in, insists I need to be in the ER, then 10 minutes later after she sees anxiety marked off on my chart, she says to have the MRI but go back to my psychiatrist so he can tell me there’s nothing there (as in brain tumor, etc.).  She also somehow feels the need to comment on the scars on my arms.
  • I have an open MRI since I’m way too claustrophobic to do the regular one and I manage to get it done.
  • Mom researches a specialist in the neuro-opthalmology field and we take the MRI disc to him.  He is very thorough and tells me I have vestibular migraines (he prescribes medication).  He writes a referral for vestibular rehabilitation for poor balance, abnormal gait, etc.
  • I begin PT and learn that I have to retrain my brain to function without input from an inner ear (for whatever reason).  I do my exercises diligently.  Some progress has been made, and I’m trying to be patient.  She thinks I can be functional by the time I hold auditions for the musical I’m directing in the fall.
  • It’s all very exhausting and sometimes I’m overwhelmed by the what-ifs and feel defeated, but there’s no choice but to try my hardest because it’s either that or use a walker, etc.  Forever.
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About healandsurvive

27 years old with an Associates Degree in social sciences. Diagnosed with Dissociative Identity Disorder, PTSD, OCD, anxiety. I also have been diagnosed with Vestibular Migraines and my everyday balance has taken a big hit, and I am basically off-balance and some level of dizzy 98% of the time. I enjoy painting, writing, acting, singing, reading, collaging, journaling; basically anything creative.
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