Friday, July 31, 2009

Ski-Free

Again, not to get hopes up too high, but a couple days ago I had my best set of stats yet!

Lying down: 117/80.... HR 64
Sitting: ........ 112/81.... HR 58
Standing: .... 107/70.... HR 65

Temp: 98.4

Tilt-training: 2 hours and 40 minutes

Ah! So great! Systolics all over 100. My diastolic BP (2nd number) is normal -- yay! And my heartrate and temperature are awesome. I can't believe how high both had been for so many months. Now don't get me wrong, I still have my lousy hours. Sometimes the tachycardia is so consuming I can hardly think. Still some low blood pressure, still some irregular heartbeat, here and there, it comes and goes. This is like my high-score card. I want to get all my tests to look like this.

But I am SO hopeful! :) Did I mention 2 hours and 40 minutes standing? Fan-freaking-tastic!

And I sat outside and read today! Mentally challenging to prepare for school and I'm really overcoming the heat intolerance. Just how long did I sit in the sun? Um, I dunno...you'll have to ask my ridiculous SUNBURN!!!! [Ooh, burn. Bahaha.] Yes, I am pink and proud!

I am just shocked by the strides we've made recently. I can't believe not a single doctor, not even the POTS specialist, ever mentioned tilt-training. We hadn't even heard of it from all our online research. Time to get the word out. Perhaps it will help other patients as much as it's helping me. :)

mo' aloe f'sho, bro.
emma

Wednesday, July 29, 2009

Ms. PacMan

I need to add a new disclaimer: I'm happy to share what's working for me! But please, consult your physician before changing your treatment plan.

Omigosh. Attack of the brilliant ideas! When I become famous -- you know, as a talk-show host or a west-coast rapper -- after my book's published but before I name my children Pez Dispenser and Soapbox Derby, I should totally engineer a new drug and name it after myself! Can you imagine? Sappy commercials and horrific side-effects. Emmatrevol.

haha *Cue tomato-throwing*

Anyway, down to business, GOOD DAY! If this isn't recovery, I don't know what is. Last night I did an hour of water aerobics and over an hour of yoga. This morning, tilt-training? 2 hours and 10 minutes. Holler! I was really light-headed for 30 minutes after, but still. I can't remember the last time I've lasted that long. I think we have reached a turning point in reconditioning. :) I still have some other symptoms, nausea, fatigue... I'm not magically "all better," but it's progress f'sho!

yay,
emma

Monday, July 27, 2009

Tilt-Training - Read This One

Tilt-training:
Thanks for your emails! I am amazed at my progress too! I feel like a TV pitchman, "I went from standing for seven minutes to over an hour...in just a week!" I'm not an expert, but this is how it was explained to me.

Stand against a wall for as long as you can, twice a day, every day. Do a little more each time. Being upright is often uncomfortable, if not totally miserable, for people with dysautonomia. But simply standing trains your heart and all of your body systems to recondition, to "reset."

For the first few tries, I stood against a wall until my symptoms became, shall we say, unbearable. But hang in there! It got a lot easier once I surpassed 20 minutes. I'm still tired by the end, but it's more due to back pain than fatigue. Yay! I'm able to accomplish more now during my tilt-trainings... keeping my mind and body busy doing chores. Don't forget to stay standing! :)


Check out this study: [Did I mention my mom deserves a degree in medical research?]

Tilt training: a new treatment for recurrent neurocardiogenic syncope and severe orthostatic intolerance.

Ector H, Reybrouck T, Heidb├╝chel H, Gewillig M, Van de Werf F.
Department of Cardiology, University Hospital Gasthuisberg, Leuven, Belgium. Hugo.Ector@med.kuleuven.ac.be

Medical treatment of neurocardiogenic syncope is insufficient in many cases. We have observed a therapeutic effect of repeated head-up tilt testing. Therefore, we have started a program of tilt training for heavily symptomatic patients. After hospital admission, they were tilted daily (60 degrees inclination) until syncope, or until a duration=20 of 45-90 minutes (90 sessions in 13 patients). The mean tilt tolerance, at the first diagnostic head-up tilt table test, was 22.3 minutes (st. dev. 10.9).

Before hospital discharge, 12/13 patients could sustain the full duration of tilt table testing without any symptom. In one patient syncope persisted. The patients were instructed to continue a program of daily tilt training at home, by standing against a wall for 30 minutes, one or two times per day. This resulted in a complete disappearance of syncope in all 13 patients.

**Orthostatic intolerance and the excessive autonomic reflex activity of neurocardiogenic syncope can be remedied by a program of continued tilt training, without the administration of drugs.

Cure OI without drugs?! As they say in the old country, AMAZINGK!

the cheese stands alone, my friends.
et :)

ps. lol. Today: Great morning, stood for an hour and 35 minutes! Woo! Afternoon was rough. Chest pain and fatigue. Everything's an experiment with the meds. Today we titrated up the Midodrine to 7.5 mg 3x/day. Also switched up the beta blockers -- 25 mg in the morning, 12.5 at noon and 12.5 in the afternoon, instead of taking half at night and half in the morning. We'll wait a few days and see if it helps improve my afternoons.

Sunday, July 26, 2009

Spider Solitaire

Forgive the fragments.

Fever down to normal range! Tilt-training: hour and 10 minutes yesterday morning. Awesome. So sore just from standing so much, I could barely swim. Need to stretch more. Making huge progress overall, though; was excited to see some friends last night. Then unexpected chest pain, palpitations, muscle cramps, nausea, etc. I had to miss out. Ugh so mad. I hate how unpredictable this is!

Last night I slept really well, and today I had a lot of energy. Even did laundry! First time in forever! But the last couple hours have been awful. Pain and foggy thinking. Bleearrgghh. Little memory "blips" too -- like going to pick something up, and realizing it's in my hand already.

Working through this, one day at a time. Encouraging overall, but it's still a struggle. I think my mom said it best: It's like putting together a jigsaw puzzle in midair. We're getting there.

bounce,
emma

Friday, July 24, 2009

Rollercoaster Tycoon

Hey! Things have been really up-and-down, but mostly up! Some stats just for fun:

Weds night, standing (feeling well): 112/59
Thurs morning, standing: 89/56
Thurs afternoon, lying down (feeling crummy): 118/68, HR 59
Thurs night, standing (feeling well): 94/57
Friday afternoon sitting up, 111/67

Kinda weird that my symptoms don't necessarily match up with my numbers.

Whenever my systolic BP breaks a hundred, it's like I've won the lottery.

My heartrate was getting kind of low, so I skipped the morning bb's yesterday. Felt sluggish for a while...but I had enough energy in the evening to sort through a bunch of stuff! (Good-bye, 29 t-shirts. Don't worry, there are still 37 of you left.) Took a whole dose last night and a half this morning. Doing really well today!

OMG the tilt-training is going GREAT!!!! Unbelievable progress. I started, what, six days ago? I could stand for seven minutes then. Fifty-seven minutes today. YES! So exciting.

Um. What else. I dunno. Too excited.

HIGH-FIVE FRIDAY!
emma

Wednesday, July 22, 2009

Treasure Mountain

Hola.
  • Tilt-training: 17 min! 22 min! 25 min! Yeaaaaahhhh!
  • Nauseous, foggy thinking, weird dreams, but overall doing well!
  • I have huge respect for anyone who wears compression/medical/surgical stockings.
  • High & Low for Systolic BP - 115 & 97. Not too shabby!
  • Finished Chronically Happy - a downer, but still some good advice. Starting When Bad Things Happen To Good People. A deep read, for sure.
And then Jimmy sold his car in less than an hour. Craigslist, say what!

AHH and Billy Elliot is coming to Chicago! That's right, all you other American cities. WE WON. Y'all can just wait your turn. Elton likes us best.

Olympics, puh-leez. Who needs 'em. We got Broadway!

chi-town,
emma

Monday, July 20, 2009

Six Months in the Blogosphere

6mos, my bloggie. What a journey! I'll try to do a recap soon. Here's what's happening today:

Not sleeping well. Very nauseous today, although everything else seems to be getting better. :) More energy, more focus. I got my compression stockings in the mail today, how exciting! They're really tight and REALLY thick. It hurts a little, but I'm sure I'll get used to it... especially if it helps my circulation! I feel like we've made so much progress lately! The fall semester for CLC starts in five weeks. Let's make it happen! Pleasepleaseplease!

Late afternoon was rough today; my pulse felt really slow. (It was. 53bpm.) I'd been doing well for a few hours, but suddenly I had to lie down. I felt like I could hardly keep my eyes open. But my BP was still okay (105/58), so I just rested. If that happens again I'll get some tea or coffee to try to boost my HR. Does this ever happen to you, POTS patients? Maybe I'm just adjusting to the increased Midodrine or the medical stockings.

Tilt-training - 8 min 45 sec; 10 min. Makes me dizzy and nauseous. Guess it's improving though, right?

Enjoy one of my favorite online videos: Magical Trevor!

confetti,
EMMAgical TREVOR

Sunday, July 19, 2009

Math Munchers

My most popular accessory is a blood pressure cuff. Talk about pizzazz.

Most recent stats:
  • lying down - 101/64 ......... 65 bpm
  • sitting - 105/67 ......... 67 bpm
  • standing - 98/61 ............ 74 bpm

The goal is to keep the first number (Systolic BP) over 100. Looks pretty good today! I've started the Tilt Training (standing up for as long as possible - critical element of reconditioning, says Dr. Kaplan). Stood for over seven minutes today before I got sweaty and lightheaded.

We've been gradually increasing the Midodrine. I took 10mg yesterday and 15 today. I think it's helping; swimming today felt easier. I expect to be very sore tomorrow. Compression stockings soon! Chyea.

trendy,

et

Friday, July 17, 2009

Tetris

Morning: pretty good! Chores etc. I am so happy when I am able to do stuff, even small stuff.

Afternoon: what happened? So fatigued all of a sudden.

SYTYCD: Ellen DeGeneres is guest hosting next week. Way cool.

Overall, I'm really encouraged. Today's Day 5 of the Midodrine ... let's hope the improvement continues!

arcade games,
et

Thursday, July 16, 2009

Oregon Trail

More energy than average today! Read, stretched, did some chores. Things are still very unpredictable, but the good hours were productive! AHH and my heart rate got down to 57 bpm last night! 57! That is SO low for me! And my blood pressure's pretty close to normal (at the moment I'm about 90/60). Good news I think!

"Somebody's poisoned the waterhole!"
emma

Wednesday, July 15, 2009

Freddi Fish

Back to the computer game titles for July. :)

Water aerobics yesterday. It's hard on my heart, but we're making progress I think.

Blood pressure's doing good. Eyes are itchy. Fatigue, chest pain, palpitations. Ugh. Just getting through each day.

I love you, Conant Alumni. You are too cool for school!

rah rah,
emma

Monday, July 13, 2009

Midodrine, Take 2

So it's Day 1 of Take 2 ... but I take 3. lolz. My brain feels fuzzy. Groggy, like I'm on cold medicine or something. I'm on 7.5 mg a day (2.5 mg 3x/day) of the Midodrine. Keeping everything else the same for now. My blood pressure was low this morning -- 71/47 when standing. Drank some coffee to boost it.

Sooo yeah. Resting a lot. Stretching when I can. Keeping track of my meds. Taking my blood pressure and heart rate a few times a day. Saving all energy for my pool workouts. It's a full-time job! I'm a little nervous to go back on Midodrine this week... hoping for better results this time!

"Cash Cab" is my new favorite show! I swear, every-other question is a term from US History. :)

Domino Theory!
et

Sunday, July 12, 2009

ANDY KAPLAN!

ANDY KAPLAN TREATS POTS!
ANDY KAPLAN TREATS POTS!
Andy Kaplan speaks my language, brutha! AHH!!

Once upon a time, yesterday, my mom went to her high school reunion. One cool dude, Andy Kaplan, currently lives in Arizona. He's a heart surgeon. But WHOA!!! AHH!!! Holy small world of major autonomic dysfunction, Batman, HE TREATS POTS!!!!

Andy Kaplan, that is. Not Batman.

AHHHHHHHHH this is so great! Can you tell I'm excited? BIG DEAL!! Almost NO one has even HEARD of POTS...and long-lost high school buddy comes out of the woodwork and is just full of advice! :) Dr. K is so so so SOOOO much more knowledgeable (and helpful!) than the current (stupid) doctor. I can't even believe it! I'm so grateful to have his insight! My mom said it was so amazing talking to him...first person EVER to really know what the heck we're talking about.

Andy's Thoughts:
  • Try the Midodrine again -- this time 3x a day
  • Fluorinef 2x/day
  • Keep swimming
  • Wear compression stockings. Even though I don't have pooling, it'll help my bloodflow.
  • "Tilt-training" -- stand up against a wall every day, a little more each time. Says it's crucial to reconditioning and "resetting" the body's functions.
More to come, I'm sure. :)

Swam today. Tired. (From the other day... *Minor correction* ... apparently 32 laps = 1 mile ... not 32 lengths. Oops. Ha. Well, I swam half a mile!)

HIGH-FIVE, ANDY KAPLAN!
emma

Saturday, July 11, 2009

Where in the USA is Carmen San Diego?

I am sore. Stretching a lot. Bad palpitations.

aloha,
emma

Thursday, July 9, 2009

Thinkin Things 3

Yesterday was not bad! Today was not so bad either! I swam again! A mile? I think? AHHH yay. I think the water is really helping my circulation. Plus the endorphins (and the dosage changes) are making me really happy. My brain feels, like, awake. weeeee!

Always emphasizing the "ups & downs" -- I'm not cured. It's a long process. But I love the good hours!

SYTYCD: I'm going to miss Phillip Chbeeb's moves. One of my favorite dances:
http://www.youtube.com/watch?v=cxy9-QasmcI&feature=related

swim swim swim,
emma

Tuesday, July 7, 2009

Zoombinis

The last few days have been miserable. Very frustrated with the Midodrine. My numbers (esp heart rate) look better than a week ago, but my symptoms are SO much worse. The fatigue is unbearable. [Thoughts, fellow POTS patients?]

Stupid doctor hasn't called us back, so we're taking matters into our own hands. Stopping the Midodrine and doubling the Atenolol (beta blockers) to 25mg twice a day. Still a relatively low dose. We'll see what happens. Please good things!!

Swam today! I am EXHAUSTED out of my mind. I was surprised I lasted as long as I did. My heart is a tired little champ. :)

water in my ears,
emma

Sunday, July 5, 2009

Minesweeper

Blood pressure's not so low today, yay. Still barely functioning. Trouble sleeping, pain, etc. Thinking feels really difficult.

Out of all the Michael Jackson hype, I think this is the funniest video yet: http://www.youtube.com/watch?v=RJDLio9Th_Q

saxophones,
emma

Saturday, July 4, 2009

Backyard Baseball

Crummy day. Eyes/ears feel funny. Heart hurts a lot. Thinking is foggy. Lying down all the time.

It's the 4th of July. Today my dad hung up the Declaration of Independence in the kitchen. Oh, the patriotism! Some things never change!

from sea to shining sea,
emma

Friday, July 3, 2009

SimTower

Takin' my stats.
  • Lying down - HR 62bpm, BP 85/54
  • Sitting up - HR 65, BP 80/50
  • Standing - HR 99, BP 75/57

Low blood pressure sucks. Dizzy, exhausted.

Have a fun and safe holiday weekend!

cue the Sousa marches,

et

Thursday, July 2, 2009

Spy Fox

I have the most entertaining dreams EVER. Last night I dreamt there was a new planet called BarackObama. Being a brand-new planet, it was dark and devoid of life. Not a single tourist trap. Lousy idea for a vacation! *Takes spaceship home.* Then I joined a jazz combo. :)

Minor improvements today, still staying off my feet as much as I can. Heartache, headache, fatigued.

Ahh! I can't believe I forgot to mention, I finally reached the epilogue of my first "sick lit" book the other day. Took me long enough; I'd read just a couple pages at a time since December. His was different situation than mine, of course, but I related to the author's struggle to keep positive. He was 24 when he suddenly developed cancer and a brain tumor. Years later, he overcame both.

Best Part: In the last paragraph, he mentioned speaking at Snowball!! Totally made my day!

warm fuzzies,
emma

P.S. Happy anniversary to my house. No matter the nail polish stains on the carpet; no matter all the endangered plants we accidently kill; no matter how many raccoons live in the ceiling of the garage and hide out in the car and terrify my sister on the way to school; it's still our house. Well... ours or the raccoon's. =]

Wednesday, July 1, 2009

Snood

It's July? Crazy. Post titles this month will feature my favorite childhood computer games. {Nerd alert}

Officially "Day 1" of the Midodrine, feeling very weak. Taking it easy.

Nice work today, NBC Nightly News, displaying a silhouette of Illinois backwards. I know our state is pretty messed up, but please. Show some respect. Look at a map.

love,
et