Sunday, May 17, 2009

A Little History

My stomach is speaking whale. [See: mmmrrrrwaaaaaalllahhhh sadface]

I can barely tolerate crackers and applesauce. No fun. Just 36 hours til the new doc!


I'm updating our records for the big Dr appointment downtown on Tuesday.

1996, age 5, necrotizing faciitis along with chicken pox. Probably no relation to POTS.

August 2006, age 15. Possibly an episode of POTS; I developed a mysterious "virus" / circulation problem while working at an outdoor day camp. During some 100+ degree days, I became very dizzy, nauseous, and achy. They suspected dehydration and sent me home with a pack of Gatorade. I started getting frequent, painful charlie horses in my calves and feet. I had to quit my job; I could barely walk. For three weeks I suffered from these weird symptoms, which vanished a couple days before school started up again. Doctors never found an explanation for my illness. Maybe a heat-induced case of POTS?

July 2008, age 17. Fell off a swing, landed on my head. No symptoms beyond immediate headache. August - happily started school!

September '08, 10 Sept - Donated blood for the first time; bad reaction. Felt weak and nauseous for days. Probably due to low blood volume -- common in POTS patients. 9/26 - went on a student retreat to a rural area. Abdominal pain and nausea started soon after.

October '08, age 17/18. Digestive symptoms worsened, extreme fatigue set it. Suddenly needed a lot of sleep. Chest pain, palpitations, migraines became more frequent towards the end of the month. Trouble sleeping. Muscle weakness, back pain, neck pain. All medical tests at school health center came back negative.

November '08, age 18. Freaky bad everything. Tremors, short of breath. New eye and ear problems. In a lot of pain, could hardly get out of bed. Came home from school, all the tests at the Dr's came back normal. Desperate for an answer (and an explanation for my absences), diagnosed with anxiety/depression, started Paxil.

December '08, BAD reaction to Paxil. Clearly anxiety was an effect of my physical symptoms, not the cause of them. [Many POTS patients are misdiagnosed with anxiety disorders. Request a tilt-table test to rule out POTS!] Prescribed Focalin (an ADHD drug - to help boost my energy). Worst day ever - stopped Focalin. More tests returned normal. Cervical spine MRI showed four protruding discs in my neck, likely due to my fall last summer. Proceeded to receive chiropractic treatment. Tried a few chronic fatigue supplements. No improvement, officially left U of I.

January 2009. Found a more holisitc chiropractor, very promising. Sadly, his treatments didn't fix me either. While weaning off the Paxil, I fainted. Unable to begin classes at community college. Ouch. Keep on keepin' on.

February '09, met an ignorant neurologist. Saw a rheumatologist. Zillions more tests. Found everything normal, except my inflammation numbers were a little high. Put on Prednisone.

March '09. Weaned off Prednisone. Started taking Ambien. Heard about POTS. Orthostatic intolerance was confirmed, but my tilt-table test was deemed normal. My symptoms made a turn for the worse overnight, and we were lucky enough to land a cancellation at Mayo Clinic (Rochester, MN). My mom and I were there for a week, testing for everything imaginable. I was diagnosed with POTS; all else normal.

April '09. Started Beta blockers (Atenolol) and Florinef. Increased fluids and salt intake. Struggled to get adjusted. Made my blog public.

May '09. Still suffering from oodles of symptoms. Lost 15 pounds in about 2 weeks. Yikes. New doctor soon!!!!!

1 comment:

  1. Bleck! or Blech...or however you spell that.

    You deserve better, Emma. I'm sorry you've been through so much. I hope the new doctor can help. I still believe that, one way or the other, things will get better with time. I admire the patience that you have displayed thus far.

    Keep hangin' in there. =)

    Sidenote: I suppose I'll have to invent an ice cream flavor called "A little history", just to restore this month's naming-theme. =)