Sunday, March 24, 2013

Half a Diagnosis

I saw the Cardiologist on Friday. She was wonderful. She took all my complaints seriously, and we had some pretty good conversation.

She told me I have either Vasovagal Syncope or POTS, and that since the treatment for both is the same, there's no point looking for the actual diagnosis.

The treatment is salt, fluids, and compression socks. So, basically, keep doing what I've been doing, and buy some compression socks.

Apparently beta blockers are no longer being used in the treatment of POTS, as doctors are finding we need higher and higher doses, and once we're taking beta blockers, we can never stop taking them.

10 more days until baby comes!

I'm excited! And nervous!

And tired.

I can't sleep in any position for more than about 20 minutes. I wake up 47 times per night with dislocations, and because I have to pee. I also have some pretty horrendous lower back pain. Hopefully, once the baby's out, the pain, and dislocations will go back to their previous levels.

Thursday, March 14, 2013


Apparently, a resting heart rate of 130bpm followed a few days later by a blood pressure of 149/98 is enough to get me in to see a cardiologist next Friday.

This was the first time I was immediately ushered into the room where they check your blood pressure, after walking in from my car, instead of having to sit in the waiting room for 15-45 minutes. So I'm thinking that had something to do with my blood pressure. After sitting down for 5 minutes, it went down to 138/89, and my heart rate dropped to 108. This is the first time I can remember having abnormally high blood pressure. It's usually on the low side of normal.

They're going to set me up with a 24hr Holter Monitor, hopefully before I see the Cardiologist, so she can look over the results.

After being on a waiting list for a cardiologist for over 2 years (and who says Canada has great Health Care?) I'm finally going to see one, and only because I'm pregnant.

Monday, March 11, 2013

Anesthesiologist Consult

I saw a really cute doctor today!

And he was really smart, too!

Gotta love it when that happens, eh?

I went into my consult expecting to spew out all of the EDS-relevant facts, figures, and information I've found through years of research, and talking to other EDSers. And guess what? I didn't need to tell him anything!

Not a single thing!

All of my little tidbits were already in his pretty little head (seriously, the guy was gorgeous). I was pleasantly surprised.

He went over the 3 different ways of anesthetizing someone for a c-section, and all of the inherent risks/benefits for otherwise healthy people, as well as the EDS-specific risks/benefits, as well as the POTS-specific risks/benefits, and the EDS & POTS-specific risks/benefits.

As I said, very well versed!

He performed a poor-man's tilt-table-test on me (lay down for 10 minutes, check blood pressure and heart rate, then stand up quickly, and re-check blood pressure and heart rate... Keep standing until a specific interval has passed with heart rate not going back to normal), and he agrees that I most likely do have POTS, even though it effects my heart rate much more noticeably than my blood pressure.

It seems that the most likely way they'll anesthetize me, is with an epidural. This way they can more safely leave a catheter in my spine, and push more medication as necessary. With the POTS, they would also slowly work up to the dose, to avoid blood pressures and heart rates going wonky. He was worried that having a spinal block, which is a one-shot deal, could become problematic if the anesthetic wears off too quickly. It's also easier on mom, and baby if it's done under a regional anesthetic, as opposed to a general.

The baby date is getting closer, and I'm getting nervous!

Monday, March 4, 2013

Bad Night

Last night was horrible.

I had to get up to pee 3 times, even though I quit drinking anything long before I went to bed, and made sure to pee right before bed... My bladder is a punching bag, apparently, and a trampoline, and it's frustrating.

Also, last night I had the misfortune of dislocating my hips, shoulders and ribs multiple times. I was unable to lay on my back, as it was hard to breathe, and I had to switch from my right side to my left side, and back again, about every 15 or 20 minutes, as I dislocated the shoulder and hip I was laying on.

My tiny little Tummy Monster is also beating relentlessly on my sciatic nerves, causing searing lightning-bolt pain, and numbness in my legs. And she's got herself wedged into my pelvis in such a way that my stupid pubic symphysis is separated almost constantly. Same goes for my stupid tailbone, on both sides. And my stupid SI joints. Basically, it feels like my pelvis is jello. Painful, painful jello.

All this to say, I got no more than an hour of sleep last night - total. I'm fairly sure I'm capable of functioning with little to no sleep, as it's been the norm for me due to insomnia for the past umpteen years, but I really would like to be able sleep sometimes.

I've reached the point in my pregnancy where putting on socks and shoes is extremely uncomfortable. So is just about everything else. I've only got 4 or 5 more weeks, though, before she's on the outside, and I'll have my body to myself again (don't laugh, I know she'll be pretty much attached to me still).

Oh, and as if I hadn't enough to deal with... I'm twitching like a crazy person again.