Hold On - Good Charlotte

Time to catsup. (Or perhaps tomato sauce, if you're in Australia.)

Saturday was really weird. After a string of mostly good days, suddenly I just felt awful. My numbers were lookin sharp (124/81!) but I was in bed all day. I wrote that I felt "numb and hollow." Considering I don't even remember writing that, I'm going to guess my description was pretty accurate.

We had the fam-friend crew over that night. I was afraid I wouldn't be able to do much, but we ended up having a ton of fun. My favorite are the moments when I'm laughing so hard that for a couple of minutes, I forget I'm sick. :)

Sunday, crummy, but swam a little anyway. The chest pain is the worst. Yesterday was a little better. Weird dreams. Glad to see my temperature back down again - 97.9 - yeah! Today I got my butt kicked in water aerobics. I feel enlightened. BP's kinda low, looking into it. Brain's foggy. Trying to sort out some school affairs. Still doing the tilt-training for at least 30 minutes twice a day. Tiring, but worth it.

phew. that's all I got.

later, skaters.
emma


"And if I had $1000000, we wouldn't have to eat Kraft dinner. But we would eat Kraft dinner. Of course we would, we'd just eat more. And buy really expensive ketchups... like the fanciest... Dijon ketchups! Mmhm! Hmhm!"

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

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

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, Heidbüchel 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.

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

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