Thursday, April 30, 2009

Rocky and Bullwinkle

Today the cleaning ladies tilted my bed back up...with no instruction to do so. I was so surprised! It's heavy!

Lol. They probably think I'm some deranged kid, jumping on my bed and breaking it. Or something.

Having a good hair day! Everything else, not so great. Calm down, silly heart. Estimated heart rate - 90 bpm.

Thinking of a new title theme,

Wednesday, April 29, 2009

Blue's Clues

I need to find some way to deal with the pain.

Last night I had another weird dream. I woke up with a horrible ache in my neck and shoulder; I think I pulled a muscle or two. Spasming, twitching, and a brief Charlie Horse I think at one point. After an hour or so, I had the strength and presence of mind to reach for my cell phone and call for a family member to bring me some ice packs.

The muscle aches and sudden contractions have been dreadfully painful today -- spreading to my mid-back and upper arm. Constant icing, Tiger Balm, Ibuprofen, resting. Ugh. I didn't take a shower today because my upper body is in so much pain. Standing up for a few minutes is difficult, but lifting my arms above my shoulders would be near-impossible. Some people describe this pain as "coat-hanger pain" - pain in the upper back, shoulders, and neck.

Time for another Symptom Clarification! [Pretend it's a game show.]

Palpitations - abnormal awareness of the beating of the heart (Wikipedia, 2009).

When I say I'm having heart palpitations, they generally
  • are painful, pounding
  • are "loud" or in my ears
  • feel faster than normal
  • sometimes occur in strange places, e.g., temples, neck, ankles, behind my knees, etc.
  • frequently occur along with headaches, chest pain, and joint pain.
Saw a friend today briefly. Fun to catch up, but visits are complicated. She is very empathetic, but again, no one is really going to understand the whole story. And I know it's not good to take things so personally, although given the unique circumstances, you'd see it's hard not to.

Comments like "So have you finished your book yet? Now that you've got time to write a book!" are not unfamiliar. They have tons of love behind them, and are meant to compliment my writing (I think). But at that moment I'm in so much pain, and I'm short of breath, and my thinking is foggy...I'm not doing well.

What are you kidding me? Time? Does everyone think I'm just having fun, sitting on an unspecified amount of free time here?
I'm not sure if they understand. If this is an "opportunity," it's a twisted one at that. Distraction and escapism have become close friends.

I'm still trying to find a way to explain everything to my friends. "Constant pain, chronic fatigue, and we know almost nothing about it"-- I'm not sure if that says enough about POTS. Sheesh. A prize to anyone who can explain it in 3 sentences or less. (And for you grammar-lovers: No Semi-colons! An independent clause is an independent clause. Period!)

Oh, I just crack myself up sometimes. :P

Anyway, enjoy this video. Danny Gokey + Blues = Exceptional!

I dig the 15-piece jazz band,

Tuesday, April 28, 2009

The Weekenders

My symptoms don't play nice. Ugh. I had to miss my sister's voice recital because my palpitations were so bad. I really wanted to go out with my family for my mom's birthday, so I went even though I wasn't feeling up to it. Joint pain got really bad, especially my shoulders and neck.

And it kills me how prideful I've become; I try to act like I'm fine. I was less nauseous than usual, but I ate way too much. I didn't want anyone to notice any abnormal behavior, for instance not trying the appetizer or not finishing my piece of cake. Against my better judgment, I didn't even ask to go home early. It's a challenge for me to be sitting up that long. I get fatigued so quickly, and I was already feeling unwell.

Today's been a bummer. The usual suspects.

Oh! I meant to write about a story featured on Oprah today -- a woman suddenly contracted Necrotizing Fasciitis (flesh-eating bacteria), and had to have a mastectomy and her arm amputated. Some of you may know that I had Necrotizing Fasciitis when I was five, along with my chicken pox. I still have lots of chicken pox scars, and a scar on my left hand from the I.V. -- not much compared to what this person has endured. Anyway, I guess it's just one of those things to help keep things in perspective.

with all my limbs,

Monday, April 27, 2009

Mighty Mouse!

or should I say...Mighty MOM! :) Here she comes to save the day!

Happy Birthday, Mom!!

I had a really good morning today. A couple "peppier" hours, and feeling well enough to do some small chores during TV commercials. A lot more tired now, and my hands keep going numb. Focusing on resting up for a b-day event tonight.


Sunday, April 26, 2009


Figuratively all over the place yesterday and today. Another reason why I don't really encourage visits. Besides feeling crummy all the time, my emotions have been so unpredictable. It's literally like being on a roller-coaster. I'm guessing most of it is from my "busy day" on Friday -- I'm like a 3-year-old recovering from a long day out without a nap.

These mood swings tiptoe along the edge of violent. I'd be happy for 5 minutes--even cleaned my room a bit!--then out of the blue, crying for no reason at all. Back and forth; being forgetful more often, then over-reacting later on. It doesn't make sense. My physical symptoms aren't much worse than average...sigh. Who knows.

I'll really try to respond to emails etc this week. Just takes a lot of energy and concentration that I don't have every day. I appreciate the comments though!

I wish I were an Oscar-Mayer wiener.

Saturday, April 25, 2009

Mary Poppins!

Holy moley! I am so happy and amazed I was feeling well enough to go to see Mary Poppins downtown last night. It'd been a week of lows since I started the Florinef, and let me emphasize that I'm not cured or anything, yesterday was really tough too, but hooray! Um, bullet points.
  • Friday 8am - after lots of bad dreams, finally got up and had breakfast. Feeling really nauseous and drowsy. Tried to go back to bed, recurring dream where I can't breathe. :(
  • 10:30am - got up, showered, got dressed. Hanging out on the couch and noticing I don't feel nearly as crummy as days previous.
  • 1pm - decide I'm gonna try to go to the show
  • 4pm - not so sure, migraines, fatigued, nausea
  • 5:45 - driving downtown!
The show was great-- so much talent!! I don't want to give anything away, but it was very different than the movie. It was hard to try to adapt to the bright lights and applause -- my eyes and ears are so sensitive. I may have been very cranky to my family too. Sorry. I was totally wiped out by the time we got home (almost midnight!), and my neck, shoulders, and back ache. But I think it was worth it! Plus we were in the perfect seats!! :)

The best part was during a quiet scene...a little boy in the row ahead of us started making noise. My parents thought he was snoring, but really he was just making farting noises on his arm. What are those called? Raspberries? My sister had no idea what was happening. But I could not stop laughing!!! I had to bite my lip til it bled, it was so funny. And then of course, the old woman starts singing "Feed the Birds," and I'm doubled over, tears in my eyes. All because of the kid making fart noises.

I shall never forget him.

I can tell I'm going to have to stretch a LOT today -- I'm pretty sore already. But I am so happy that for the first time in months, I've been able to do something like this. I even stood in line for the bathroom!! Did I feel pretty miserable? Yes. Palpitations, stomachaches, joint pain, the works. Even during the show, just sitting, I felt the need to lie down...BUT this is the first fun outing I've have in a long time, and it was fun.

**To Prevent a Misunderstanding!**
I had a decent, tolerable day. This does not mean that I'm cured or that I'm having an easy recovery. Most POTS patients have up-and-down days, weeks, and months for several years. I am thankful that the first "up" day in 10 days fell on the day we had Mary Poppins tickets. But *please* understand that my condition does limit me severely, and I cannot do this kind of thing every day. I nearly didn't even go yesterday!

Phew. Okay, that's all for now.


Thursday, April 23, 2009

Winnie the Pooh

Friday Sodium Intake - 3600 mg
Sat - 2610
Sun - 5000
Mon - 5000
Tues - 5500
Weds- 2650
Thurs - 3905

I'm glad I ended up having enough stamina to take a shower today. Was really doubting it this morning.

eyes so tired,

Wednesday, April 22, 2009

Felix the Cat

And then you have those days when there's not much to report.

Really sleepy. Will try to respond to emails etc as soon as I can.

happy earth day!

Tuesday, April 21, 2009

Bananas in Pajamas

Well the theme song is animated. So it counts.

Feeling a trifle less crummy this morning. :)

Super-exciting news! My mom has gotten me an appointment with Dr. Janice Gilden -- a POTS specialist in downtown Chicago. She's the only POTS-approved doctor in Illinois who will see patients 18 and over. And the appointment's in just 4 weeks! (The other guy's next opening wasn't until July. Can you imagine?!) Weird side note - she's an endocrinologist. The first guy was a cardiologist, and the one who diagnosed me at Mayo was a neurologist. What category goes POTS fall under, anyway?!

Anywho, my mom was very encouraged by what she's heard and read about this doctor. It'll be a long day at the hospital -- redoing tests, taking a lot of blood, performing similar tests in a different manner, doing POTS-specific tests that not even Mayo has....sounds thorough to me! Looking forward to it. Well, not the testing necessarily, but certainly seeing a new doctor.

Also -- again, everything here is just a theory we found in our own research -- there's some friend of a friend who had POTS and some neck problems (like me!). She had neck surgery, and it's made a world of difference in her symptoms, says the grapevine. Can POTS be caused by neck injury? Looking into that as well.

bananas in pajamas!

Monday, April 20, 2009


Especially fatigued in the last few days; palpitations and lightheadedness have kept me bed-bound for longer, and exercises are very difficult. Chest pain, bloating, nerve pain in my ribs.

Yesterday we raised the head of my bed (and lowered the foot) so there's about a 4" incline, per doctor's orders. This seems really silly to me, because the closer I am to standing, my symptoms are generally worse. Have you (other POTS patients) found this helps you to get reconditioned or anything? The one good thing is that my feet are a lot closer to the floor, making it easier to literally roll out of bed. But it's very weird to try to sleep on a slant. The pets are very confused by it!

LGS test came back normal.

Starting a potassium supplement today -- evidently you're supposed to take one if you're on Florinef, but the doc failed to mention that!

I've been really "out of it" mentally too. My best joke of the weekend:
If you had to rate your attention span on a scale of 1 to 10, what's your favorite color?


Sunday, April 19, 2009

Alvin and the Chipmunks

Yesterday was really bad. Lots of pain, tachycardia, foggy thinking. It's possible I may have forgotten to take my pills in the morning. Solving that problem with the almighty pillbox. woo.

It's days like that, when literally everything is a challenge, when reading makes my eyes spazz out and I randomly get like burning chest pain and joint's those days that really make me question any sort of planning in regards to my education, social events, etc.

My fever's back. But I'm sleeping a lot better overall I think.

that's all for now,

Saturday, April 18, 2009

The Jetsons

Eyes really tired, heart really tired.

Um. Tired. Not thinking too clearly.

later gator,

Friday, April 17, 2009

Care Bears

Today: tremors, palpitations, exhausted, feet are purplish, lots of joint pain.

After quite thorough research on the zillions of varieties of Gatorade, Powerade, etc., I have made the decision that these so-called "high-sodium beverages" don't pass the test. Eight ounces, fifty calories, and only 110 mg? Psh. V8 has four times the sodium, and it's healthier and won't turn my tongue purple.

We're thinking that the doc's Rx for "at least 10,000 mg of sodium a day" is really not a realistic figure. For a person -- even a college-age person -- to subsist on Ramen noodles and instant potatoes alone, why it's chaos, I tell you! My body needs real food, not just a really, really, really salty diet to help increase my blood volume.

Started the Florinef (Fludrocortisone) this morning. Hope that will help some.

I love "Illiniopoly!" :)

Tuesday Sodium intake - 4035 mg
Weds - 5280 mg
Thurs - 4655 mg

Thursday, April 16, 2009


Delightful weather we're having! I sat outside for about 40 minutes before I started getting palpitations and feeling dizzy. 60 degrees. Hm. I wonder what my heat tolerance will be like this spring and summer. Better take advantage of the "cooler warmer" days when I can.

Today Mom found a "POTS + Chronic Fatigue" study that's being conducted at a medical school in New York. I haven't seen the details myself, but there's some new drug that a lot of people have been responding well to. Filling out all the paperwork now...I hope they pick me! Maybe I should send in a picture. Like a glamor shot or something.

It was about one year ago that I decided on U of I. The question everyone asks is, "Where are you going to spend the next four years?" And in regards to picking a major or career, it's along the lines of "What will you do with the rest of your life?"

Funny how none of that really matters at the moment. For several weeks before I ultimately came home, the fact that my dorm was right next to the campus healthcare facility held infinitely greater importance than what or where I'd chosen to study. (Although I think many would point out that being within a reasonable distance of home certainly made things easier.) Just a word to my compadres a year or two younger: perspective.

But I do plan to return to U of I, in case you were wondering. ;)

Time to lie down again,

Wednesday, April 15, 2009


Super nauseous. I feel like I'm force-feeding myself every few hours just to keep the lightheadedness away. Cramps, chest pain, joint pain in my hands.

Time to explain another symptom! This one's been really, um, heightened since I started the Beta blockers about 2 weeks ago. My sincerest apologies to my immediate family. =/

"Mood swings"
  • Noticeable "highs and lows" emotionally -- usually spend a couple days at each peak or trough.
  • "Lows" : very irritable, oversensitive - brief crying for no reason - overall grumpy. Feeling like my emotions are out of my control. Feeling not at all like myself. Thinking my entire persona has "gone fishing."
  • "Highs" - not necessarily improving physically, but significantly more mentally upbeat, feeling like my personality is stickin' around for the time being.

Please do me a favor and just let me try to get adjusted to these meds. aaaagggghhhh.

Happy End of Tax Season!!


Tuesday, April 14, 2009

Kim Possible

Getting up in the morning has been especially difficult lately. Even after 9 hours of sleep, I still feel extremely tired, mentally and physically. It takes me about an hour or more to adjust to keeping my eyes open and to prepare my muscles to get out of bed. I should probably highlight how different this pattern is from my "former life" -- I found that, for academics, I reached a peak of mental alertness at around 5 or 6 in the morning, so I'd leap out of bed at 4am on a regular basis. Granted, I'd also go to bed pretty early, but it's just not like me to be so groggy and disconnected in the morning.

Yesterday I learned of a celebrity who has Orthostatic Intolerance (OI), a main symptom of POTS. He was diagnosed about two and a half years ago: Greg Page, better known as the original Yellow Wiggle. He had to leave the group to focus on his health.
(Scroll down a bit to "Medical Condition Background.)

It's not "cool" that somebody famous has a condition similar to mine, but it might help people understand the severity a little better. If it makes one of The Wiggles fatigued, then it must be bad!

Mom got me a TON of high-sodium foods. :) More to come on which make the grade.


Saturday - 5005 mg Sodium (Goal: 10,000 mg)
Sunday - 3630 mg
Monday - 5600 mg

Monday, April 13, 2009


Yesterday was challenging. A lot more fatigued than usual. Dizzy, mood swings, tremors, hands and feet going tingly/numb periodically. I think I pulled something in my shoulder/neck overnight. Slept 11 hours instead of my usual 9 -- definitely a testament to how worn out I am!

Slightly more positive news: my temperature has been down for two whole days! Hanging right around 98.6 instead of 100.0. Shouldn't get too excited, it might just be temporary, due to changes in medication or something. We'll wait and see.

Palpitations have been significantly more painful so far today, around 120 bpm even when lying down. Just gonna "take it easy" as they say.


5 minutes later...
Doy. Just realized I put my Beta blocker on the kitchen table this morning but forgot to take it. That could explain the heart-racing. Stupid short-term memory loss. >.<

Saturday, April 11, 2009

Looney Tunes

I received two very interesting pieces of mail today, both from the Mayo Clinic.

Item one: very fat envelope containing absolutely everything. Write-ups from consults, test results, pages on end...with some very interesting commentary from the internist -- our "go-to guy" while we were there.
(Back story: the internist was very, hm, confident that I did not have a medical problem. He seemed quite sure of himself that all my physical symptoms were due to the psychological stress of "going off to college." In speaking with the doctor after all my tests, I pronounced him mentally stable, but totally unapologetic and snooty. He seemed very surprised that another doctor was able to find something he didn't predict. I suspect he has a superiority complex.)

So in this huge packet, the neurologist wrote all about my tests, especially the tilt-table test, claiming "findings were compatible with POTS." Very definitive. Then he talks about the prognosis etc.

THEN in the conclusion, the internist writes, "Hopefully this **hypothesis** is correct." Hypothesis? Hypothesis?!? What a nincompoop. Can't even call my diagnosis a diagnosis, for Pete's sake.

Item two: "You have been chosen as part of a scientific sample of take part in this survey...about the care you received at Mayo Clinic." Private, confidential phone call conducted by an objective third party. Sweet.

I'm going to put this in the nicest possible way. I feel very special.

(I promise I'm not some evil kid out to get revenge or something. It's just not right for anyone to go to a doctor - especially at Mayo! - and be treated with such a condescending attitude.)

Happy Easter in advance!

Thurs - 4075 mg sodium
Fri - 3780 mg

Thursday, April 9, 2009

The Official Welcome Post!

Welcome to my POTS blog. :) My name is Emma, and I'll be your tour guide today.

POTS (Postural Orthostatic Tachycardia Syndrome) is a serious, often life-altering condition that is overwhelmingly misunderstood in the healthcare world. In reading other POTS patients' blogs, I've come to realize that it is so immeasurably important for all of us to share our experiences, good and bad -- with doctors, medications, exercise, alternative therapies, and just the daily struggle that so few truly grasp.

Today I adjusted my privacy settings so that others with POTS will be able to simply Google search and find my blog. My hope is to reach several sectors of the Dysautonomia community -- POTS patients themselves, their family and friends, people who currently have symptoms and seek a diagnosis, and, well, everybody else. =]

Most people -- most doctors(!) -- have never heard of POTS. Some don't even believe it exists. This is perhaps one of the greatest sources of frustration. POTS is not easy to explain, diagnose, or treat. But getting a glimpse into another person's life may help everyone understand it a little better.

The address of my blog is

You can follow my story through my daily updates, check out the side-bar for some medical history, or just email me!

We will get through this together!

with love,

P.S. I'm trusting the system here. Please do not stalk me or plaigerize my work. Thanks!


You learn something new every day.

Today I learned that while a can of no-beans chili may have a tantalizing 2520mg of sodium (vs. 1900 in a can of chicken broth), the actual task of consuming a can of chili is a lot more difficult than the broth. Especially when the aluminum gets stuck between your teeth, that's the worst.

But seriously, my appetite is a fraction of what it was before. I don't think my tummy likes the Beta blockers. Womp. But I've been trying to read a bit about what helps POTS patients...and Miso soup has been recommended -- "nutritious and high in sodium" -- looking into it.

Migraines and chest pain today. It's been one week since I started the Rx shampoo, but my hair is still falling out pretty steadily. I think my mood's been noticeably better though, which is really important all-around. :) Sat in the sun for about 20 minutes, it really is springy out today! Light continues to be painful for my eyes, but I'm hoping maybe I can get "reconditioned" to that too. Really sore from yesterday's stretching, especially my back. Little by little...

Oh! And my dean at U of I says I can register for fall classes! He didn't really specify when...either 2 weeks or 2 months. Definitely keeping my hopes in check with the reality of a long-term healing process, but it's still nice that they'll let me hold a spot. :)


Wednesday, April 8, 2009


Yesterday we got the rest of my test results back from Mayo --all normal. Yay! The doc says it means I don't have anything else wrong besides POTS, and it confirms the diagnosis. Today I'll get a prescription for Florinef -- a drug used in POTS and CFS (Chronic Fatigue Syndrome) patients to help retain sodium and increase blood volume.

There are a bunch of side-effects for this one too...oy. Nausea is one of my biggest symptoms these days - makes eating very unappealing - makes getting 10,000mg a day especially difficult. Although the good news is I've discovered Uncle Ben's Ready Rice -- one cereal bowl of flavored rice has over 2000 mg of sodium!! Already got it on the shopping list. :) Thanks for your suggestions too!

In other news...pulse down to 81 bpm yesterday (definitely an improvement from the bb's, yet heart-pounding still painful); my palms were blueish this morning;
keeping up with the exercises; resting a lot.

"and now...a musical interlude"
et :)

Monday - 6405 mg sodium
Tuesday - 5925 mg

Tuesday, April 7, 2009

The Powerpuff Girls!

This cartoon was surprisingly violent...especially considering the main characters' names were Bubbles, Blossom, and Buttercup. =P

Today: nauseous, dizzy, etc.

Listening to a lot of public radio. Jazz/blues stuff is great, and it's fun to imitate the DJ's voices. You know what I'm talking about...all slow and hip like they're growing a goatee and wearing sunglasses inside.

"{Some crazy V7 chord} All right, yeah. That was "Love Letters from Brazil in the Hot Heat Amazon," performed by the Dulchowski Trio. Remember the 1947 original by Swing Daddy-O? A classic by any standard. Well you just heard Maxy Hawkins on drumset, Chuck Siegelman swingin' that soprano saxaphone line, and Bartholomew "Barry" Bridges bringin' us his bluesy bass. (Laughs) You're listening to Jazzy Jazz-sation with me, Gordon "the Jazz Master" Michaels, on your very own Public Radio.

"Hey, don't forget to check out our new Celtic music broadcast, 2-5am with Mickey O'Leary: Blarney On the Air."


They actually do have a weekly broadcast of Blarney On the Air. haaaaahaha :D


Monday, April 6, 2009

Pinky and the Brain

Good news: I slept okay last night! I dreamt I was at "U of I" (my junior high) and was taking blood tests instead of algebra tests.

Less-than-good news: Wrists and ankles really achy -- probably the worst I've seen them. Probably from stretching yesterday. :( Feeling a bit of relief now in my wrists, taking the opportunity to type this.

Days that my siblings (and the rest of the world) return to school are rough. It's becoming more and more clear that 9 out of 10 people will never really understand what I'm going through, what any person with POTS or CFS or Dysautonomia is going through. My daily, weekly, monthly experiences are not easy to explain. I have a host of symptoms for every given hour. Research hasn't yet found a clear-cut reason how or why I developed this condition. I know it must be unsettling to my peers -- especially my close friends -- that somehow a perfectly healthy young adult can suddenly acquire a life-altering illness.

It's much easier to ignore this kind of stuff.

I appreciate all who listen.


Sodium intake: 5545 mg (goal: 10,000 mg)
Fluid intake: 116 oz (goal: >80 oz)

Sunday, April 5, 2009

Captain Planet

Trouble sleeping again; nightmares. The beta blockers are probably interfering with the Ambien, but getting 4-5 hours of sleep is better than none. I've noticed a couple improvements since starting the bb's: heart rate is a little slower, palpitations are slightly less bothersome when I get them...but other than that, I'm not too impressed. My vision has been really blurry today, things just coming in and out of focus sometimes. I'm not sure what the time frame is for a trial of bb's, but I'm curious to know at what point my Dr would recommend changing meds.

Today I've had a little more energy to keep up with my exercise/stretching regimen. :)

The CLC summer classes registration guide came in the mail yesterday...daydreaming about being well enough in 8 weeks. [Yes, the average recovery rate for POTS patients is 2-5 years. Just keeping optimistic.]

I still have a bunch of purple freckles left over from the sweat test!

Sodium intake: 3,425 mg (Goal: 10,000 mg)
Fluid intake: 112 oz (Goal: >80 oz)

Saturday, April 4, 2009

Angela Anaconda

Had a lot of trouble falling asleep, even with the Ambien. Lots of bad dreams last night. Woke up at 4:30. Stupid beta blockers, cause or add to insomnia for a lot of people.

Super grouchy up until a couple hours ago. My poor family. :( Also way tired, understandably.

Someday there will be no such thing as side effects. Especially not a dozen per drug.

Go UNC!!

Friday, April 3, 2009


Last night I had to email the School of Music at U of I and postpone/cancel my music ed interview/audition again, for the 12th time. It really shouldn't be a big deal, but it's little things like that that seem to be setting off some really awful mood swings. I hate not feeling like myself. Other beta blocker side effects: freezing cold extremities, suddenly tired, nausea, etc. Lame.

Reading has been significantly harder today. Yesterday I almost felt like my old self in that regard -- went 45 minutes without getting a headache or my eyes feeling tired. A huge improvement from my daily symptoms...back to 5-10 minutes.

It's only been in the last week or so that I've realized that some of my symptoms don't make much sense to people. I've been saying for months that "my eyes feel tired," and finally my mom asked what that meant. I should try to describe it more.

They literally feel heavier, achy; it takes a lot more effort to keep my eyes open; closing my eyes isn't always a great option because of the twitching; it's a lot more difficult to concentrate on conversations or focus on people or whatever I'm looking at; my eyes feel strained, like they've been working for a week without any sleep.

The weather's getting a bit brighter! Got the mail. Yay!

"Action League NOW!"

Thursday, April 2, 2009

PB&J Otter

>>Wrote this last night, but it didn't post.

Age 7. World's greatest theme song. Especially around 0:45 when it gets all soulful. haha love it.

Hokay, halfway important things now.

So far today, I have ingested about 14 glasses of water and 4000 mg (4 g) of salt. Woo. Taking the treatment to heart here. I'm not going to be sick, but I'm thinking 10g (10,000 mg) of sodium (every day!) is starting to look like a very lofty goal. That was the exact amount the neurologist suggested, but seriously? Ew. I don't think my taste buds can handle it. Maybe it'll just take some getting used to.

Truth: I'd have to chug V8 for like 3 hours straight to get 10g a day.

Epic truth: Consuming four times the FDA's recommended daily amount of sodium is not for the faint of heart or weak of stomach. Bleh.

I would definitely consider sodium tablets, but most POTS patients show no response to them. It looks like the diet change is necessary. Just call me the saltine queen. (But not more than 6 a minute. It's physically impossible.)

Today was Day 1 for the Beta blockers -- tiny pills! Literally smaller than Certs mints or Nerds candy -- and my dosage is one half a day! I'm amazed my dad was able to split them. I think the dosage is so small because a number of people respond really badly early on.

I started my reconditioning exercises too. Palpitations in my ears, and anything involving a sense of balance was really difficult. But I can tell these will help me work up a greater tolerance to activity.

I've updated my medication list on the right-hand column, if you have any thoughts on that.

love and otters,

Wednesday, April 1, 2009

Hey Arnold! - Part 2

**POTS Info!**
My mom deserves an honorary degree in medical research.
  • Most POTS patients are caucasian women in their teens, 20s, and 30s.
  • Those who get POTS somewhat suddenly (as opposed to having lots of illnesses throughout childhood) have a better chance of recovering.
  • There are three proposed "levels" of POTS:
  1. Level 1, slightly irritated by symptoms;
  2. Level 2, can't do as much as they would like to do, but overall still lead fulfilling lives;
  3. Level 3, moderately to completely disabled. Unable to work, study, etc. (I'm Level 3.)
  • "Generally, people with POTS are busy, very physically fit, successful, and high achievers" (Mayo Clinic, 2007). Glory be, if that ain't the sweetest diagnosis a girl could ask for!
  • Medical school study shows that "the tachycardia (heart racing) found in POTS is NOT caused by anxiety" (...will cite source).
  • Medical school study shows that "70% of POTS participants on medication were able to return to work within 18 months" (...will cite source).
  • It is theorized that there are different types of POTS, including IST-POTS and adrenal-dysfunction-related POTS.


Tomorrow I start Beta Blockers, a medication that some dysautonomics respond well to. I also will start taking an iron supplement, OTC eye drops, and a shampoo to help my alopecia (fancy word for hair loss).

Other things known to help POTS patients:

  • Lots of fluids
  • Increased salt in diet (10g/day) -- increases blood volume
  • Exercises specific to reconditioning
  • Keep positive!

Again, it is a great comfort to have a diagnosis and a certain direction to travel, but POTS is so new and so complex, there's no quick-fix or magic bullet. We've read that the average time for a full recovery is 2-5 years. It's going to take a LOT of patience and understanding. Getting a diagnosis is just the beginning.

We're in it for the long haul.



Hey Arnold! - Part 1

Title theme for April: my favorite childhood cartoons =]

Didn't get a chance to post yesterday, really rough day. So relieved to have gotten a diagnosis Monday afternoon, but I still had several tests on Tuesday to confirm it isn't anything more serious than POTS.

Our last full day at Mayo included a visit to a liver specialist, some more blood work (9 vials, yikes! Led to lightheadedness, tremors, and difficulty walking), an ultrasound of my abdomen (normal - yay!), and vision tests at the neuro-ophthalmologist. I had a bad reaction to the dilating eye drops: sudden fatigue and trouble balancing. But it was comforting to hear that there are no issues with my retina, optic nerve, or anything else. The gastroenterologist also predicts that her round of blood work will come back fine; it's probably time to switch from Tylenol back to Ibuprofen.

This morning I had my last test -- a thermoregulatory sweat test. My neurologist says that the results of this test will help determine how to treat my specific case of POTS. In sum, gold powder was sprinkled all over me; then they put me in an oven-type contraption ("sweat cabinet") and waited about 30 minutes for the gold powder to turn a deep violet, showing where and how much I sweat in response to neurological stressors such as heat and humidity. The test will show if I have autonomic nerve damage or abnormal sweating patterns.

My technician was especially knowledgeable, answering all my questions. Images were taken throughout the test to track my "purpling" progress, and we should hear results by Monday. The tech pumped music into my own personal sauna -- made the experience more bearable, and allowed me to keep tabs on how long it had been. It was really excruciatingly hot; I got dizzy, had some pin-prick feelings in my shins. They didn't monitor my heart rate, but it must've gotten to at least 120 bpm, and this is lying down! The whole experience reminded me of a time when I got terribly sick a few summers ago; will write more on that later.

Jeez, folks. Sorry this is so long. No more skipping a day of blogging!!