drop it like it's POTS

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It's been a long couple weeks, so this is going to be a pretty basic update with just the necessary information. No life musings this time. (I know you're disappointed.)

Anyways, after all of my cardiologist and autonomic testing, I had my final test, the Tilt Table test, last Tuesday and my follow-up. 

What's a Tilt Table test? Basically they have you lie flat for 20 minutes while you're hooked up to about 12 different machines. They test your blood flow from your brain, your legs, your blood pressure in 3 different spots, and your heartbeat in about 20. Then, they tilt you (hence the name) literally standing straight up and test your heart rate, pulse, blood pressure, all those same things. They prefer you to be there for thirty, but I only made it twelve before almost fainting. Good to know! 

Like Dystonia, when you have a renowned specialist, they take one look at you/your file and know if you have it right off the bat.  After searching for months (even years) for someone that knows their ish, it's both a surprise and relief how they can diagnose so quickly and accurately.

So, I do indeed have POTS. (Postural Othostatic Tachychardia Syndrome.) What does this mean? Means my blood pressure plummets and my heartbeat skyrockets upon standing for prolonged periods of time -- which makes it difficult for me to stand up for more than ~10 minutes or so. Really cramps my style pretty much everywhere: malls, grocery stores, concerts, airports, driving, etc. 

The good news? Now that I have an official diagnosis, I can get medicine to (hopefully) help. According to him, I have a "80% chance of significant improvement" and 70% chance it will help relieve symptoms.  I've been living with this for six months now, so even with Lyme, this will help significantly improve my quality of life. I'd love your prayers that this medicine will work and not give me many side effects! I'll know within the next month or so if it's working. 

Also, he believes I have EDS -- calls me a "classic case." I'm seeing a geneticist in December for testing to potentially confirm. See last post for more details on that or just Google it. It sounds like a big deal, but it really isn't to me at this point. 

On that note, I had to fight for this POTS diagnosis. I saw three doctors who were "confident" I did not have POTS -- and wouldn't give me a tilt table test when I asked specifically and displayed obvious symptoms. However, upon testing, I am a "classic case." Here's my charge to you: whether it's a small or big health issue, go with your gut. Always get a second, third, or even fourth opinion. 

I'm also going through some Neurologic testing, but we're postponing that until my heart medication levels out in a few weeks. 

Also, my doctor has been in the hospital, so my treatment is now delayed until November. Not the news we were hoping for since I've been relapsing badly, but I'm just trying to take things day by day since he's the only doctor within 500 miles that can help treat Lyme. 

As with all of these things (EDS, POTS, Mono, etc.), they will get better once the Lyme subsides. It's a domino effect.

That's all for now. Happy Monday! 

PS: Shoutout for those of who who have been sending mail, encouraging e-mails/Facebook messages/texts/etc/etc. Means the world.

xo

UncategorizedElise Graham