My Diagnosis

During my 5 day hospital stay in September, many possibilities were thrown around.  I had several EKGs, Chest X-rays, 3 MRI’s of entire spine and brain, an electrocardiogram, a CT, an EEG, an FBI, a CIA  and buckets of blood work. Nothing seemed to fit perfectly and encompass my many symptoms.

I told the doctor that whatever is the most complicated or weird, that’ll be what I have.  My body has always been dramatic and ridiculous.

Finally a neurologist came to visit and do an exam.  He was a neat guy who carried a cute little black doctor bag.  It seemed very “Little House on the Prairie-ish.” He first observed several tremors and convulsions.  He did some other poking and smacking or whatever neurologists do.  He ruled out MS.  This was an immediate relief.  I don’t know a lot about MS, but I know they have a big float in our city’s parade every year with a big foot that rotates around and it says “Stomp Out MS”.  So it must be serious and not good.

He then did a test.  All he did was have me lay down and while laying down check my blood pressure and heart rate.  Then he had me sit up and check again. Then he had me stand.  My heart rate was over 167 and I was shaking all over and nauseas and dizzy.  Tears were starting as my entire body was tremoring and I felt like complete crap.  I was about to pass out by minute 3 then when he called the test.  He said “I think you have POTS”.  He told me what it stood for and to look it up and start reading about it.  He said further testing would need to be done to confirm it called a “TILT Table Test”.

He left and I started reading.  The first website that popped up was a rare disease website and it had the statistic that 25% are on full disability and can never work again and they compared the quality of life to someone who has COPD or is on dialysis with kidney failure.  Mostly I was horrified and just didn’t want to keep reading things.

I eventually got stable enough after trying a few different beta blockers to be discharged.  The first thing that was scheduled with my Tilt Table Test. I’m going to share my Facebook post following that test because it is very honest about how much I really hated it.  I don’t want to scare you if you have not had a Tilt table test, but I also don’t want you to be lied to be everyone saying “you just lay down, then stand up, then they ‘get the information they need’ then you lay back down” because that is a bunch of shit that couldn’t be farther from the truth.  Enjoy my post below which I wrote on September 22, 2015.

Thanks for all the prayers today.  This Wonder Woman looks a little less wonderful.  I feel like so many of you have been praying and maybe even interested for more than just to get information so I’m gonna write a long post about what today was like.  If you’re not interested, you should have stopped reading by now. 

1. It was awful.
2. First they took me back and said Tom had to wait in the waiting room and they would get him in a few hours. That lasted 6 minutes.  Then they said ok, he could come back until they got the IV in.  That changed to, ok he can stay for the entire test.  Thank you Jesus. If he wouldn’t have stayed I wouldn’t have the awesome picture of myself mid test! Oh and I would not have had the strength to finish it for sure.  But seriously, the picture is great. 
3. Then they started the IV.  That took 5 needles, both arms and 2 nurses.  Where is that awesome medic who gently started it on the side of the road?
4. Basically the test would be nothing to y’all.  Cause y’all are really good at laying flat and standing up.  The goal of this test is to make you pass out.  We’ll discuss what that is like in a bit. 
5. After the iv is set, you get hooked up to two heart monitors and get a blood pressure cuff on your arm (The one without the IV, or the one without the successful IV but still hurts like crazy from the digging).  Then three straps attach you to the table.
6. The test is easy.  Lay flat 10 minutes and have your blood pressure taken twice.  Then have the table move to a standing position and stand for 25 minutes with your blood pressure being taken once per minute.  Then lay flat and have mediation administered to ‘make your body feel like it is exercising’.  Then stand up immediately for 10 minutes.  She said she can give the medication 3 times. 
7.  I really enjoyed the laying flat part.  I enjoyed the standing less (not cause I’m lazy, because my body is broken and it’s really f-ing hard).  First round of standing was long.  By the end I was very sick, nauseas, hot, sweaty, fatigued, and my hands were purple and cramping into velociraptors.  My legs hurt like crazy. 
8. Here is a fun exchange during this part. 
   1. “How do you feel Amy?”
   2. “SHIT”
   3. “I can’t write that down.”
   4. “Yes you can Ruth, I believe in you.”
9. Finally I made it to the time limit and down I went for the first dose of meds. Up I stood.  My heart rate sky rocketed to a nice 160 or so and I actually felt way better.  Those 10 minutes were the easiest of it all. 
10. Then she did the second dose.  The second dose was made of Satan’s blood.  Oh holy shit.  It was the worst feeling in my life.  My heart was pounding against my ribs, my chest was tightening. Then my abs started to tighten down from the outside in.  Sweat dripping down everywhere.  I felt like I couldn’t get enough air.  If the straps weren’t there I would have loved to collapse.  Many tears and bartering with the woman to put me down.  The room started to fill with black spots.  Then they all changed colors.  I wanted to throw up but there was nothing there.  My last words were “Hot, Hot, Hot, Hot!” and then I finally passed out. 
11. My heart rate sky rocketed and my blood pressure crashed. 
12. I got to wake up and have Tom there! The lady then told me that the girl before me passed out after 3 minutes standing (lucky bitch), but her heart stopped completely for 30 seconds.
13. Now we wait for the doctor to review it and go from there.  It’s finally over though.

Thanks for all the prayers. Pray the doc can use the results to fix me!

Anyways, that’s the story of the Tilt Table and long story short, that is the test they used to confirm my diagnosis of Postural Orthostatic Tachycardia Syndrome.