I followed up with Dr. House about two weeks ago (sorry, I'm way behind in the blogging department). Actually, I got to see his NP (let's call her Cameron). Cameron and I got along swimmingly. She allowed me to ask questions, listened to said questions and concerns, and answered them. I'm a big fan. Dr. House also has a really super awesome nurse. I also met another girl who is living with POTS and EDS and about to graduate high school (WAY TO GO, GIRL!). She was getting tanked up with IV fluids and therefore was pretty sick, so I'm sorry for the circumstances, but as I talked to her mom, sounds like we're pretty much Twinkies in terms of POTS symptoms. She has very severe gastroparesis and other severe GI issues as well, so we've both walked the TPN/liquid diet path (just so much sadder for someone in high school who's been dealing with it since she was quite young!!). It started when her mom saw my Gatorade and told me that I need to carry around a bottle of water to rinse my mouth out afterwards. I just learned this very very very sad lesson that Gatorade rots your teeth in a personal way when a trip to the dentist revealed innumerable teeny tiny little cavities between my teeth, but that's another story for another day. Apparently, she suffered the EXACT SAME FATE. Wow.
Anyways. It was good to meet someone else who gets it (like the mom telling me to sit down and talk... not stand...she said she could see my brain fogging)!
Anyways, during my appointment, I took a dose of the new medicine. I expected to be closely monitored because Dr. House made this whole huge deal about how dangerous this med could be, so I needed to be at the office when I took it, and that he needed significant testing prior to starting the med (he made me stay an extra day for testing just to pick up a specific blood pressure cuff and wear it for the weekend to check my baseline BP and heart rate). They didn't even take a look at the blood pressure data I brought until I asked them if they would. They didn't even check my blood pressure after taking the medicine - at one point, they asked me if I was feeling okay, but that was it. So... I'm not really sure why I had to drive 70 miles to take a pill (I filled and brought the prescription - they didn't provide the pill or anything), but oh well. If the only reason I was there was to meet my EDS/POTS Twinkie, then that's good enough.
I was supposed to get a sleep study done, but my insurance had denied it. I asked Cameron what the study would have been checking for. My sleep is pretty poor quality. I and very tired, but have trouble sleeping from pain. Also, even on a "good" night with pain, I wake up several times and often have trouble going back to sleep. Turns out that people with EDS have very poor sleep because their heart randomly races at night. It is very hard to detect unless you are being constantly monitored with very sensitive equipment. So she said that we could do an empirical trial of a beta blocker to see if it would help my sleep. A beta blocker reduces your heart rate and blood pressure. Normally, dropping my BP wouldn't be good, but if I'm in bed, it doesn't really matter.
I also met with an exercise physiologist, a world-class marathoner. Pretty sweet. I TOLD him I was hypermobile, but he still wanted to assess each joint, and acted completely shocked at the flexibility in each one. He also assessed my strength and things like that. Interestingly, he found my grip strength to be quite poor. My hands have been fairly bothersome lately even when my arthritis is not flaring, but that was the first real objective test that's demonstrated that. Oh well, who needs hands anyways?
He told me that I likely have been over-doing the exercising. He said that I pushed my body way too far on the stress tests that they did. As a former athlete, he said I'm too good at ignoring my body and pushing through, so I need to get a heart rate monitor and let that be my guide. There's a narrow range that's good - during exercise, the idea is to get the heart rate up a bit, but not too much. We don't want to activate the sympathetic nervous system. It's a delicate balance, apparently. When my heart rate goes above my "target range," no matter what I'm doing (exercising, grocery shopping, doing laundry, etc), I need to stop and sit or lay down until my heart calms down.
I made him earn his pay, as designing a strengthening program for a person with POTS, EDS, and arthritis is quite a challenge. ;P I am easing my way into the exercise routine, which is to say that I am not being as good as I should be with it.
I started the two new meds, and I am THRILLED to say that they are making a TREMENDOUS difference in the way that I feel and am able to function. I am very excited, because we will be going UP on the blood-vessel-squeezing med in a few weeks, so things can only get better!! It really helps my stamina so much. It's unbelievable, and I'm so thankful!!! The beta blocker has helped my sleep to some extent, and I'm also allowed to experiment with taking it during the day if my heart starts racing (I just have to watch out, as it can cause my blood pressure to drop).
Praising God for the positive progress He's allowing!