Where to go from here: seeking further improvement with POTS

As I mentioned in my last post, I’ve had some improvement with POTS and NCS.  My family, then, was disappointed to see a resurgence of exhaustion and lethargy this weekend, perhaps due to my presyncope episode Friday.  When I’m feeling better, I’m more physically active, more talkative, more fun, more creative, more energetic– when worse, I’m more serious, more sleepy, more sitting-around, more blah– or I use tons of energy trying not to seem that way!  POTS is unpredictable.  It’s hard to live with the lack of predictability, and it’s hard for my family not to know how I’ll be doing or what they can count on from me.

We love riding bikes together (pictured, Chattanooga, 2012).  This weekend, I rode my bike 5 minutes with my family!  HUGE TREAT!
Mark and I have always loved riding bikes together (pictured, Chattanooga, 2012). This weekend, I rode my bike 5 minutes with my family! HUGE TREAT!

That said, I’d love to see further improvement, so where do we go from here?

God alone brings healing.  I found it interesting that upon the completion of my 100-day-wellbeing-challenge, I didn’t feel way better.  I have felt better the past couple weeks, though, without obvious cause, which reminds me God can bring healing at any time, for any reason.  He can (and does) also sustain me and our family through the rough times.  I am thankful, though, that there are earthly measures and medicines that can indeed help bring healing.

To this point, I have mainly sought practical improvement through Western, conventional medicine.  I wanted to exhaust my accessible resources (and take advantage of our maxed-out deductible!) before trying other approaches.  I have also only wanted to try one type of potential improvement at a time to see what helps.  I mention treatment that has helped thus far in a previous post.

I am ready now to explore more options to help me get to the next level of functioning, Lord willing.  My top choices are:

1) A functional medicine doctor.  These M.D.s would seek to discover and treat the underlying cause of my autonomic dysfunction.  No one seems to know why I developed POTS, and perhaps they could find out and treat it.  We do have a few local functional medicine doctors, but I’m not sure how familiar they are with POTS.  Also, functional medicine doctors don’t tend to accept traditional insurance.  This could be a good option, though.

2) A naturopath.  Not medical school trained, this practitioner would try to find imbalances that could be corrected or improved, often through natural and holistic treatments.  I’m not opposed to this, but I’m not sure how likely I am to find significant improvement.  Could be worth a try.

3) Mayo Clinic’s Pain Rehabilitation Center.  This is my top choice right now and the one we are currently pursuing.  Despite its name, this 40-year-old clinic specializes in helping people not only with chronic pain but also with autonomic dysfunction (which is what POTS and NCS are) regain an active life through a myriad of treatments, from physical therapy to biofeedback to exercise training to medicine adjustments to nutrition and counseling.

I spoke with the Pain Rehab Center, and they told me up to 8 specialists would be working with me every day for more than three weeks.  I am excited that their extensive knowledge about POTS would help me when we encounter roadblocks.  (When this happened locally when I did months of cardiac rehab and PT, we just came to dead ends.)  The Pain Rehab Center is currently reviewing my medical info to see if they’ll accept me.

The downside:  It IS a long program (about 25 days) and far away (Rochester, MN!).  We mentioned it casually to our kids when they were disappointed to see me doing worse.  I (a stay-at-home mom) have never been away more than 3 nights (three times, in 11 years) so this long-term plan sounded a bit scary to them, and one asked, “Is it guaranteed to work?”  I thought that was a great question.   We had to tell them it isn’t guaranteed but I have spoken with the mother of someone who completed the program and heard many success stories from her.

Here’s a YouTube video of a young man with POTS who completed the pediatric version of the program.  He captures many of my own thoughts quite well!

So, we’ll see.  We are trusting in God to lead us and work out the details, according to His will.  Thanks for praying for us along the way!


Alive and well this New Year

Friends, I have not dropped off the face of the earth.  I’ve been avoiding the computer like the plague (because, when I use it, I often feel like I have the plague) but am otherwise alive and well.

Actually, quite well.  For whatever reason(s), I have felt so much better this past week than I have for a couple years– more energy, clearer thinking, ability to stand/walk longer… still the typical POTS symptoms, but less so.

Interestingly, I have also had quite high blood pressure this week(hypertensive category, believe it or not)– I’ve never seen numbers like that from this body!  (I do take lots of midodrine to increase my BP.)  I’ve also had normal blood pressure at many points.  This is a huge difference from the bottomed-out numbers I typically see, and I am sure this explains why I am graying out less when I’ve been upright this past week.  I’ve also gained quite a few pounds compared to a few weeks ago– maybe that means I’m hanging on to the salt and fluid that could help my blood stay thicker, which is a good thing!  (Or was it just too many Christmas goodies?!?)

You may be interested to know that I have, on average, doubled the amounts of steps I’ve taken per day (around 3,000) compared to the amount I was taking during Christmas break (around 1,500).  Thanks to my handy pedometer for verifiable data!

Most significantly, many friends continue to pray for me regularly and/or daily, which is just amazing to me.  I am so thankful!

Well, that’s the quick update from my neck of the woods…. we’ll see whether other blog posts materialize as I face the perils of sitting in front of this screen.  HAPPY NEW YEAR!