Tag Archives: treatment

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.

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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?

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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.

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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.)

Growing in confidence

Our son has been sick for the better part of a week now (flu-like symptoms; nothing serious) and often mentions how bad he feels, how he wants to get better, and how he can’t do much.  He lies around a lot and when he’s up, he walks around droopy, pasty, and lethargic.  It all sounds a bit like my own life, I will say!

However, although I certainly still have my share of walking around droopy and telling my family I feel bad, I realized I have gained some confidence, too.  Although I have not gotten way, WAY better, I am getting kind of used to being sick and am definitely better at making decisions that enable me to maximize my days and doings.

I know, now, that on a good day, I can mop a section of the kitchen floor before sitting to rest in the family room for a while until I do the next one.  I know now that I can probably chat perkily for a while at a party if I make sure I’m seated and am drinking a glass of salt water.  I know to rest before certain big events and avoid other ones altogether.

I’m also cautious about certain things:  I’m still gunshy about walking the entirety of our church, because I’ve gotten too close to presyncope too many times.  I’m still hesitant to give my son a buzzcut while I’m standing, because I grow too lightheaded.  I’m still careful to have a stool in the kitchen so I can sit down at a moment’s notice while prepping meals.

I have made progress in adapting to my altered lifestyle with a chronic illness; however, I would like to understand more about how to live with POTS and NCS.  I mentioned that we are considering having me go to a three-week program at the Mayo Clinic for people like me who have autonomic dysfunction.  Today, I will undergo the last local medical tests needed for Mayo’s evaluation of all my records, then I should hear in a couple weeks whether they will accept me as a patient.  I’ll keep you posted!

Have you had to adapt to a very different life than you thought you’d have?  How have you done that?

I can even play mini golf if I just do a few holes and sit down in between-- the pasty face shows now's the time to sit!
I can even play mini golf if I just do a few holes and sit down in between– the pasty face shows now’s the time to sit!

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!

I’m all about that salt, ’bout that salt; no pepper

So, why am I constantly mentioning salty drinks and salt fixes?  Believe it or not, simply INCREASING SALT (and fluid) INTAKE is one of the first lines of treatment for most people with POTS and certain other types of dysautonomia.  Although most Americans have heard we should decrease our sodium, salt is fantastic for most people with POTS, because it thickens our blood and increases our blood volume so it has a better chance of “sticking” in our brains and the upper half of our body instead of pooling in our legs and feet.  Often people with POTS have less blood volume than normal people, for some reason– so think of how you feel when you’ve given a pint or more of blood (lightheaded, nauseous, weak, maybe fluish):  That may be how a person with POTS feels a lot of the time.

Believe it or not, if I am fading or having a hard time talking and drink a big glass of salty water, it helps significantly.  I’m so thankful!

My kind of Christmas cheer
My kind of Christmas cheer

So how does one get all this sodium?  (Don’t take my advice, but doctors often recommend 5,000-8,000 mg of sodium a day for people with POTS.)  Of course, you get some sodium in your diet.  For about a week last summer, I counted sodium milligrams the way people count calories and discovered I need to add about 2-1/2 tsp of salt per day to my diet, particularly because I don’t eat a lot of processed foods (which often have a lot of sodium).  That’s a lotta salt, folks!

At first, I tried sprinkling salt on everything I ate.  However, I didn’t love the taste, plus at times, I can’t eat a ton due to nausea and digestive issues, so I didn’t really want to ruin the food I was trying to enjoy.

I started putting 1/4 tsp salt in hot tea (acquired taste for sure!) and have worked my way up to 1/2 tsp of salt in pretty much whatever I drink (tea, water, steamed almondmilk, etc)– and I can handle a full teaspoon in electrolyte-type drinks, like Gatorade (which I don’t like due to sugar and color), or even in sodas (ditto) or smoothies.

Foods thought of as salty, like chips, may be high in sodium… but I once calculated I’d have to have about 20 servings of chips PER DAY to get the sodium I need (149 mg in a serving of regular potato chips is just a drop in the bucket for me!).

If you are adding salt to your food (or drinks!), consider sea salt for the trace minerals it has.  If you use straight Morton’s, you may inadvertently intake too much iodine.

OPTIONS FOR INCREASING SODIUM:

  • Sodium chloride tablets:  My doctor at Vanderbilt’s Autonomic Dysfunction Center prescribed these for me, or you can order them online.  I was taking 1,000 mg tablets, which were very handy, but the impact of that much salt on my stomach often led to trouble….
  • Nuun tablets, Thermotabs, etc: These can be added to water and give you a good kick of sodium.  I like to keep Emergen-C packets in my purse, because they can easily be added to water with an extra tsp of salt and still be drinkable.
  • Salty foods:  Some POTSies eat pickles, then drink the juice, and I’ll definitely slurp up some olive juice with the olives I love.  Deli meats, prepackaged frozen meals, cans of soup, etc, are all full of sodium.  Just be sure to count milligrams!
  • Salty drinks:  Drinks with electrolytes like Gatorade or coconut water have some sodium and can handle more salt.  I often drink tomato juice mid-morning and chicken broth mid-afternoon.
  • Sole  (pronounced so-lay): This is a highly concentrated salt solution made with Himalayan sea salt.  It claims to cure many, many ailments and is recommended to be drunk each morning 30 minutes before you eat.  I’ve been making and drinking this for a couple months, and I don’t notice a huge difference compared to what I’d been doing, but then again, I was already taking in a lot of salt.

You know I like pretty things.  Just last week, a friend gave me this adorable bag specfically for holding the salt packets that were in an old metal tin in my purse.  What a great gift (and very useful)!

My own personal salt lick
My own personal salt lick

Do you like salty foods or do you have more of a sweet tooth?

Lots of lightheadedness (POTS Symptom #5); also, how I was diagnosed with POTS

For me, lightheadedness was a big clue that something was possibly quite wrong with my body.  In the fall of 2012, I started getting lightheaded anytime I stood still: waiting in line at Walgreens, chatting with friends in the kitchen, tucking my kids in bed, singing a hymn at church, scanning shelves of books at the library, looking at clothes at a store.  (Hence, the stool!)  I also got very lightheaded any time I lifted my arms (putting on mascara, grabbing something from a high cabinet, hugging my husband’s neck).  A low moment came when I was waiting in line at Goodwill with my then-4- and 6-year-olds and slumped to a puddle on the filthy floor to avoid passing out.  When asked if I was okay, my then-4-yr-old Ella put her hand on her hips and sassily told everyone, “It’s just a headache.”  Um, not exactly.  (More about that in a future post: Horrendous headaches were my first big clue something was wrong.)

Lightheadedness feels like I’m woozy; the world is a bit fuzzy; my body is unsteady; I need to sit or lie down!

I started telling my doctors about this, and off we went on a version of “If You Give a Mouse a Cookie.”

If your physical therapist sees how lightheaded you are during exercises, especially when you raise your hands above your head, he will refuse to treat you anymore and send you to your primary care physician.

If your primary care physician has you sit up straight and breathe in and out as he listens to your chest, you will almost pass out, and he will send you to your neurologist.

If you see your neurologist, he will suggest that you are highly anxious and prescribe Xanax.  You know people with mental illnesses sometimes don’t realize they are unwell, so you think, “Hmm… maybe I’m highly anxious and just don’t realize it.”  Turns out, you’re not, and Xanax doesn’t help.  Repeat to yourself: POTS IS NOT ALL IN MY HEAD.

If you go to your orthopedist and tell him how raising your hands makes you lightheaded, he will have you demonstrate to compare the left side vs. the right side.  When you almost pass out after keeping your right arm in the air for a few minutes (though seated), he will get very excited about this phenomenon.  He will send you to a leading vascular surgeon.

If you go to the vascular surgeon, he will also get excited by how lightheaded you get, how your heart races, and how your blood pressure drops.  He will want to devise a test for you so he can study what’s happening.  A couple weeks later, he calls to tell you you are beyond his scope, and he will make an appointment with a cardiologist.

If you go to a cardiologist to tell him about your dizzy spells, he will correct you and tell you to use the word “LIGHTHEADED.”  Dizziness is more like the world is spinning around, which is not really how you feel.  That was helpful. He will also say (when asked if you could have signs of POTS) that he would NOT treat POTS, because he is a CARDIOLOGIST.  Oooooo-kay!  (Many people with POTS are treated by cardiologists.)

If you get extremely discouraged and try a brilliant new internist, she will send you to an electrophysiologist.  You will tell both of them all your symptoms, which you’ve been reluctant to share in case they think you’re crazy.  (Repeat to yourself:  POTS IS NOT ALL IN MY HEAD!) They will have you do a tilt table test, and after 12 minutes of standing upright, you will pass out.  Your body’s mixed response will have them decide to send you to Vanderbilt University’s Autonomic Dysfunction Center.  And boom, now we know!  Lightheadedness DID mean something was wrong, and I have POTS and neurocardiogenic syncope (mixed dysautonomia).  Turns out, my brain is not telling my body how to work properly to get enough blood to my brain, hence, lightheadedness!

You are thankful that lightheadedness, a key symptom of POTS, is often relieved by lying down.  Although you are now maxed out on meds and have improved, you still get lightheaded every day while upright (though less so) and are glad you’ve learned to manage by sitting a lot, using a wheelchair, and having your trusty stool.

Have you ever gotten the runaround for a medical issue?

No wonder I'm lightheaded when I tuck the boys in... 6 feet in the air!  Thanks for putting the kids to bed most nights, Mark!
No wonder I’m lightheaded when I tuck the boys in… 6 feet in the air! Thanks for putting the kids to bed almost every single night, Mark!

POTS and a pedometer

For a few, POTS can be a progressive disease that gets seriously worse over time.  For most, POTS can wane and wax, although one’s baseline health may be pretty rough.  For me, I am hoping to see continued improvement over time and am working and praying toward that.

If you have a chronic illness, you might want to jot down a few notes of daily life every few months or so.  I try to write down what I do for a few days, maybe notes on eating or sleeping, and a summary of symptoms.  This helps me look back over time to see whether I’ve improved, stayed the same, or gotten worse.  Some of these observations may be subjective, so a few objective measurements may be helpful.  For example, I like to wear a pedometer now and then to track the number of steps I’ve taken.  (Thanks to my sister for giving me this one for Christmas several years ago.)

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I have no records of steps taken from Spring 2013, when I was at my worst with POTS.  However, I have records from Fall 2013 (about 2,600 steps/day), Spring 2014 (about 2,100 steps/day), and Fall 2014 (about 2,600 steps/day).  Some weeks are worse than others, so that may explain my low numbers this spring; I am glad to see I have currently increased my steps about 500/day since then.

The chart below shows how many steps per day are recommended for the healthy American (10,000) along with averages for most American men and women (info from this 2010 New York Times article)… and me .  (Note: Amish men take about 18,000 steps/day!)

tracksteps

Health experts generally consider 5,000 steps per day to be in the sedentary category, so I am glad I am at least halfway to sedentary, considering my difficulties with POTS.  Although I can’t string too many steps together yet, I do like to try to take 50 here, 50 there, and hope to continue to add more in coming months.  Hey, maybe I’ll reach sedentary one day!  (Pre-POTS, I was a huge walker and would love to know how many I took back then!)

I had to laugh when Luke (8 yrs old) wanted to try the pedometer after school one day and logged almost my entire daily amount in about one hour.

Yeah, he clearly has some energy to spare.
Yeah, he clearly has some energy to spare.

Have you ever worn a pedometer or one of the new Wifi-enabled tracking devices?

P.S.  Many are still praying with me that I’ll be able to REALLY walk one day— thank you!

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.

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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):

biofeedstanding
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).

biofeedpractice

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

goodbiofeed

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