Wax on, wax off; oops, I mean, Breathe in, breathe out

Have you heard of 4-7-8 breathing?  It’s all the rage these days.  It’s free, you can do it anywhere, and you have all the tools you need to do it!  What’s more, proponents say it will lower stress, help you fall asleep quickly, clear toxins from your body, and bring world peace.  (Oh, wait, no, not sure about that last part.)  Seriously, though, it is supposed to bring a number of health benefits.

I’ve tried this breathing style off and on for some time and ended up coordinating words to go with it.  I love chanting the words in my mind, because 1) I don’t have to count; 2) it reinforces what I believe.  So here’s 4-7-8 breathing, Kristi-style.

The idea behind the counting is to inhale through your nose for four counts; hold that breath for seven counts; let it out through your mouth for eight counts.  Repeat this 3-4 times, a few times each day.  So, with words, it’s like this:

Breathe in through your nose as you think: “You-are-sov’-reign.”

Hold your breath in to: “You-will-ne-ver-leave-me,-Lord.”

Exhale through your mouth to: “I-sur-ren-der-and-I-wor-ship.”

(Don’t say any of it out loud; just think it in a rhythm.)

How’s that for a boost and encouragement in stressful moments or any old time?

Speaking of breathing, I’m loving my new yoga class!  It meets once every week or two in the comfort of my own home, thanks to modern technology (does a DVD player still count as modern technology?).

My hope is to gain flexibility and strength, but I am also seeing that yoga is fantastic for helping one learn to maintain good breathing in a variety of challenging body positions; the idea is that one could translate that to good breathing in a variety of challenging situations (like standing and walking, for me), not just poses.  The DVD I’m using has completely separated yoga from its ancient religious traditions and Westernized it, which works for me.

Have you tried yoga?  Do you like it?

P.S. I may or may not have been harmed in the creation of these photos.  I may or may not ever be able to do the poses in these photos.

P.P.S.  What’s the deal with the breathing?  I still think focused breathing could significantly affect my quality of life with POTS & NCS; see my posts on biofeedback here and here.)

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.

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!

Biofeedback to help treat POTS – Part Two

I posted last week about biofeedback and thought I’d do a bit more.

First, let me say, I do think biofeedback would be best done under supervision by a professional; someone with POTS may benefit from going to one locally or by going to the POTS Treatment Center in Dallas, for example.  Here are three searches that may help you find a practitioner near you.

AAPB Search

BCIA Search

EEG Info Search

Last fall, I called the one (only one) near me and told her what I was looking to do through biofeedback, that is, stabilize my autonomic nervous system by training it to stay in parasympathetic mode.  She told me she wasn’t comfortable taking on someone “with my condition” (POTS) and suggested I call a medical hypnotist in a completely different state.  Hmm…. I haven’t taken her up on that yet and am still disappointed she wouldn’t see me.  Maybe I’ll try again!

Still, if you can’t find anyone near you, there are some decent resources to help you.  I gleaned from the breathing techniques taught by Dr. Andrew Weil and have used his CD a number of times to help train my breathing; here’s an article he wrote about biofeedback.  I also learned some helpful practices from a book, The Healing Code.  Also, emWave offers online seminars that can help one practice biofeedback better.  Glean what you will and ignore what you should; each of the previous espouses some philosophies with which I don’t agree.

Holding the emWave2

For those interested in emWave, you may like to know a bit more about your choices.  I first bought emWave Pro.  You install emWave Pro on your computer, then connect your ear sensor through a USB port to see real time feedback on your heart rate variability (HRV).  I ended up returning it, because I didn’t like being tied to sitting at my computer; if you have a laptop, that may eliminate that issue.  I then bought emWave2, which I have loved.  It’s a small device that I can take with me anywhere (lying on the couch, in the car on a road trip, at a Bible study), and it shows my current level of coherence with a colored light.  I can then sync my sessions back to my computer to see how I did, or I can hook it up to my computer while I use it and see real time feedback.  (Note: Prices are much lower on Amazon.)

Since one of my goals is to help my body stay in parasympathetic mode while I am standing or walking, I like the emWave2 for its portability.  Here is what my heart rate variability currently does while I am upright (right half of the screen):

Standing upright during the last few minutes of biofeedback

As you see, although I was in coherence/parasympathetic mode for much of my biofeedback session, as soon as I stood up and walked into the kitchen, my heart rate went up and my heart rate variability showed a lot of struggle.  If you have no idea what I’m talking about, see my first post on biofeedback to help treat POTS.

Keep in mind, biofeedback may or may not be appropriate for you, and I am not qualified to give medical advice.  If biofeedback does help you, though, let us know!

Biofeedback to help treat POTS

My sister called yesterday to ask what I knew about the POTS Treatment Center in Dallas.  I did some research on it last year and found that their techniques significantly help some people; they highlight, among other things, biofeedback and supplements.

I wasn’t sure I had or wanted to spend the time (2 weeks) or money (up to $10,000) to go, so when my friend S. sent us a check to use as we saw fit, I bought emWave, the computer program they use for biofeedback at the POTS treatment center.

Navy Seals (among others) use biofeedback, and the idea is to use breathing to regulate your body systems in a particular way, particularly to minimize stressful responses to stimuli (for Navy seals’ bodies, that would be coming under fire; for my body, that would be going to a standing position).  People with POTS tend to have their bodies stuck in SYMPATHETIC mode (like there’s an emergency) all the time (even though we may feel completely calm and relaxed).  Our bodies should generally be in PARASYMPATHETIC mode.  Using biofeedback can help the POTS patient settle his or her body into parasympathetic mode, and the idea at the POTS Treatment Center is that our POTSy bodies would relearn how to stay in parasympathetic mode and get unstuck, basically.

Emwave works as I attach a sensor to my ear lobe, and it measures my pulse and heart rate variability and shows my body’s responses in real time.  In the picture below, I was having trouble getting coherence (staying in parasympathetic mode) as shown by the many jaggedy lines that indicate low heart rate variability (HRV; time between heart beats as one breathes in and out).

These nice, smooth waves show my body settling into parasympathetic mode.

I enjoyed this website about the science behind measuring HRV (heart rate variability) as something athletes could use to enhance their training and performance.

I mentioned in my 100-day challenge to myself that I intend to do biofeedback 5 times per week.  It is challenging to take the time to do it, and I don’t always feel great doing it (believe it or not, nice, controlled breathing can be hard work!).  Also, I have been a bit discouraged to have temporary major reduction in my ability to hear, accompanied by loud ringing in my ears, after my sessions recently.  I’m hoping that just means more blood is flowing throughout my head than normal; I don’t want to ask a doctor because I’m embarrassed that they might think I’m crazy, delusional, hypochondriacal, etc.  However, I am planning to stick with it and told my sister I’d give her $5 each week I don’t complete.  Hey, either she’ll get rich or I may see some good improvement!

Next week, I’ll tell you a bit more about Emwave and biofeedback for POTS.

In the meantime, here are a few perspectives on the POTS Treatment Center:

From Jackie, a patient with POTS and Ehlers-Danlos syndrome

From Ilana Jacqueline, who has POTS and related issues

From testimonials according to the POTS Treatment Center