Running Ultramarathons
with POTS: Recovering Strength and Endurance
By: Tara Tulley LDEM,
LCSW
A few individuals have asked me lately how I have been able
to continue running with POTS (Postural Orthostatic Tachycardia Syndrome). I
decided I would write my story on how I discovered I had this condition, how it
has affected my life, and how I have decided to run anyway.
In 2007 I completed my first marathon, Deseret New Classic
Marathon on July 24th. At that time I was also recovering from a long-term eating
disorder, and was warned repeatedly that running would kill me. I found the
opposite to be true; I found that running was the catalyst that changed how I
viewed my body. I started to respect my body and appreciate the abilities that
it had to endure, and through a long journey now consider myself fully
recovered from an eating disorder, and no longer struggle with the daemons that
kept my head bound for many years. Two months after completing my first
marathon, I decided to run in the Top of Utah Marathon. I loved running
distance so much, that I wondered how many other marathons there were around
Utah, and it was then I was introduced to the world of the Ultramarathon.
In October of 2007, I ran and completed the Ogden Valley 50
miler. No one thought I could do it, I had only run two marathons, and had not
done much distance training before that summer.
I not only completed a 50 miler, but also discovered that I was not as
tired and sore after running 50 miles as I had been running marathons.
In fall of 2007, I also decided to return to school. I had
been a practicing midwife in Utah for about 8 years, and had been politically
active in passing legislation to license midwives. When I went back to school,
I initially thought I would complete another bachelor’s degree that would get
me into a Nursing program, with the eventual goal of becoming a nurse
practitioner. Somehow that plan changed and I ended pursuing a degree in social
work, and a Masters degree at the University of Utah.
In 2008, I decided to take things a step further. I signed
up for the Utah Grand Slam, completing 5 marathons in a 4-month period, and
also completed two 50-mile races. I also starting training in Mauy Thai, and
started participating in local smoker bouts.
In 2009, my
speed was getting better, I signed up for more challenging mountain races. It
was during an attempt at the Kat’cina Mosa 100K that I started noticing some
odd things about my running. Mountain racing was a different ballgame than road
running. In the heat of the August summer, I ran out of water on a difficult 9-mile
stretch of the race, and became seriously dehydrated. Making it difficult to
traverse down the mountain I experienced dizziness, hallucinations, and made it
to the aid station 1 hour after the cut off time. I was completely defeated and
demoralized, because it was my first time not being able to finish a race.
Brushing it off to poor planning with hydration, and 100-degree temperatures I
thought it was a fluke. I attempted the Bear 100 miler in September that year,
and again had the dehydration issue and had to drop at mile 45.
During the fall of 2009 I started my Masters program at the
University of Utah. I would typically awake at 5am and drive to Salt Lake City
to beat traffic, and arrive early at school. I would then go for an early
morning run, sometime meeting my brother, Swan, at his training gym (he was
working as an elite triathlete coach), and we would run around Sugarhouse Park,
and then I would run back to school. I would spend a long day at school and
then go home. The days I was not in school, I was working as an intern at the
Utah County Justice Center, and also spent long days at that practicum. During
the in-between hours I studied and sometimes slept.
In April of 2010, I decided to go down to the Grand Canyon
with Jim Skaggs and Brian Beckstead to run the Rim-to-Rim-to-Rim challenge. We
started at Bright Angel Trail on the South Rim early in the morning, and made
our way to the North Rim. I was able to keep up with them for the first 19
miles, but around mile 17, when the heat of the day started hitting, I started
feeling very sluggish and sick. At mile 19, at the beginning of the assent to
the North rim. I had to stop, and I could no longer keep up with the boys.
After lying down to take a short nap, I felt better enough to slowly climb the
North Rim. I was about ½ mile from the
top when they passed on their way down, and I felt OK by then, so I told them
to go on, and I would return at my own pace.
During the day
I had been taking about one Scap (300mg or so) of Sodium per hour, and eating
mostly Lara Bars and gels. On the way down I started feeling week, but not
horrible yet. When I was about 7 miles from Phantom ranch, I started feeling
sick, and was running out of food. I had not understood how much I needed to
carry for a self-supported run. I made it to Phantom ranch just after dark, and
was able to sneak into the store to buy a few items.
After crossing the bridge at the Colorado River, I crashed.
I was dizzy and weak, and slowly made my way up the 9-mile stretch, and finally
made it out of the canyon about 3am. I was out of Scaps, out of food, and no
stores are open in the Grand Canyon at 3am. I quietly drove back to the
campsite, and in the morning found Brian, who had come down with me, and he had
to drive my van back the 10 hours to Utah. I experienced hyponatremia and it
was a very scary experience. I almost passed out several times when I would
stand up and my ears were ringing. I think I ate a whole plate of bacon, and
could not even taste it because I was so depleted of sodium. It took me about 3
days of hydrating and drinking sports drinks before I could taste normally
again.
In May of 2009 I attended a Global Eating Disorder
Conference, and listened to a presentation by Dr. Elizabeth Joy. After hearing
her presentation, I knew she might be able to figure out what was wrong with
me. I had started experiencing other strange symptoms after the Grand Canyon
run. I started having issues with my blood sugar. Any time I ate carbohydrates,
my blood sugar would spike to 200-300 on a glucometer reading and then return
to normal within 90 minutes. I also
started dealing with increasingly extreme fatigue. By the time that I ended the
May 2010 school year I could barely get out of bed. Some days, I would sleep
most of the day, and still be tired. Moving was a surreal experience, sometimes
I felt like I was not even connected to my body. After seeing Dr. Joy in June,
she immediately suspected that I had POTS syndrome. She ran several blood tests
on me, and the only one that came back positive was a norepinephrine test
showing that I had a pretty good case of androgenic POTS. Dr. Joy told me that
what I was doing, running (to increase my blood circulation), increasing salt
intake, and caffeine 100mg in the morning was about the best I could do for
POTS, and she discouraged me from using a Beta Blocker, which is used in some
POTS patients, because she was afraid it would interfere with my distance
running.
At the time I was working with a sports nutritionist, and so
we started a painstaking process to unravel how to keep my body functioning and
able to run. I was able to complete one
50 miler in June, by putting scaps in my hydration pack and drinking Coconut
water. During that race my nutritionist told me to try taking 1500mg of sodium
per hour, which was about twice what is recommended for a normal person. I
completed the race, but still had difficulty and was still hyponatremic after
the race. After that race I ended up in the ER three times needing IV fluids to
stabilize, and having more blood sugar issues. For about a month I could barely
get out of bed. But I kept forcing myself to move. When you have POTS, every
morning when you wake up, it’s like you have the flu. The one way to get over
the symptoms for me was to make myself move past it and get my blood
circulating, then the flu symptoms would be not as bad when I was moving.
My nutritionist had me increase both my potassium and sodium
intake to 10000mg potassium daily and 5000mg of sodium daily on days I was not
active. In the mean time I worked with my Uncle, Dr. Kory Branham, who believed
my POTS was likely tied to my adrenal gland function, especially given the
blood sugar issues I was having. This was a plausible theory, as my paternal
grandmother suffered from Addison’s disease. Over a couple of months of taking
a lot of supplements and slowly making myself return to exercise, I was able to
reduce my need for sleep to 12-14 hours per day instead of 20 hours per day,
and I attempted a couple of races.
The next race, 2010, was the Speed Goat 50K. My nutritionist
had me taking 3000-5000mg of sodium per hour in the heat at this point. This
was helpful for my energy and hydration, but not good for my gastrointestinal
system, and so I made it about 22 miles of that race with severe GI issues.
In August of 2010 I again attempted Kat’cina Mosa. I started
out OK following the high sodium regimen, but on the most difficult climb of
the race, suffered a severe hyperglycemic episode. I had taken an Ensure before
the climb, and about half way up started feeling dizzy and seeing yellow half
moons in one of my eyes. I had to stop for about 30 minutes, and wondered if I
was having a stroke. I recovered, and made it to the checkpoint at mile 23, and
went on to barely make the cutoff at mile 41 at the Little Valley Aid station.
At Little Valley, I again drank another ensure, and within 30 minutes started
having blood sugar issues again, this again slowed me down, and I had to quit
at mile 46. What I discovered is that fructose, especially high fructose corn syrup is not tolerated by my body during long events.
After Kat’cina Mosa, my body was very tired, and I started my
second year of graduate school demoralized, and sick. I could no longer keep up
with the early morning trainings before school, because I was too tired. I
needed at least 12 hours of sleep per night. I managed to struggle my way
through Grad school, I attempted the Wasatch 100 in September, but had to drop
at mile 18, and it was the most difficult year of POTS in 2010-2011. However,
slowly but surely with perseverance and strict adherence to nutritional needs,
I started to be able to do things again, and tolerate running. In January of
2011, even though I was still pretty sick, I was able to summit Mount
Kilimanjaro, and completed a Snowshoe 50K that same month.
I graduated with my MSW in May of 2011, and tried a 50
miler, but suffered a stress facture and dropped at mile 25. The rest of the
season I was out for running. I did, however complete 45 miles of a 100 miler
in October of that year. In February of 2012, I underwent a partial
hysterectomy. That year of running was a wash, because it took 12 months for my
abdominal muscles to strengthen, and I could barely keep a power walking pace.
However, I experienced an unexpected benefit of some of my POTS symptoms
decreasing in severity. I slowly started improving, and by summer of 2013, I
was able to slowly finish 30 miles of a 50 miler.
I again attempted Kat’cina Mosa 100k in 2013, but
experienced a panic attack on the course, and dropped at mile 13. I realized on
that course that I had experienced so many set backs from racing, that I was
having PTSD symptoms on races about DNFing, and as a result DNFing. So in
September of 2013, I connected Lisa Smith-Batchen about couching, and working
through my running anxiety. My body was working better, but my anxiety was
pulling me down. I was able to complete
50miles on Lisa’s race in 2013, and completed a 50K a week later. Another challenge that came with POTS and a
hysterectomy, is that despite the fact that I exercise and don’t over eat, I
gained 50 lbs. After starting training with Lisa, I’ve been able to drop about
25 lbs, and slowly I finally starting to see my weight come off. That has also
taken a lot of nutritional adjustments, and continues to be a challenge.
Through a lot of training and effort, I have started
completing ultramarathons again in 2014. In January I completed a Snowshoe 50k,
I was slow, but I finished! In March I attempted a 100 miler on Antelope, and
was only able to make 62/100 miles, but that was the furthest distance I have
ever completed, so it was a win. Then I completed the Squaw Peak 50 in June of
2014, I had difficulty with some POTS symptoms in the heat and was slow after
mile 33, but I finished! I ran the Deseret News Marathon again and finished on
July 24th. And then there was Kat’cina, I felt OK for the most part,
but had difficulty on some of the hill climbs with speed, and my heart rate,
and it slowed me down. I was rushing to try to get to the cut off at Little
Valley by 4:30, but fell and hurt my back on the way down. I was devastated,
because I wanted to finish this year so badly, but reflecting, I realize my
speed still is increasing, I did not get dehydrated, and my blood sugar stayed
stable.
My next challenge to overcome with POTS is increasing heat
tolerance, and increasing my ability to tolerate hill climbs and my
speed. I’m hoping Kat’cina helped my body so that I can finish Wasatch 100 this
year. The first 18 miles are going to be the most difficult for me. That is the
big climb on Wasatch, and that is where I have timed out twice. I plan on doing
a lot of heat and hill work in the next 3 weeks, and praying that I make it. It
is my dream to complete 100 miles, and it is a bigger dream to beat POTS, be a
fast runner again, and win a 100-mile race. As my coach says, “If your dreams
don’t scare you, they aren’t big enough”. I know I can do it, I know there is a
formula, and somewhere there is a cure for POTS waiting to be discovered. When
it is discovered, I’ll be first in line for a cure! I dream of someday, being
able to be fast climbing hills again. I visualize it every day. I am faster
every year, and yes I still have POTS, but it is not dictating my life.
Some things that I’ve learned from POTS:
Sleep is important. I no longer practice high volume as a midwife because
my body doesn’t handle endless nights with no sleep as well as it used to.
What worked for me may not work for everyone; you should see
a doctor who specializes in POTS to determine what is right for you.
Fatigue makes everything difficult, but perseverance out
wins fatigue.
Respect your body
Medications: some medication have helped me such as a serotonin–norepinephrine reuptake inhibitor (SNRI).
These medications are typically prescribed to treat depression, but with
Androgenic POTS SNRIs have help control my norepinephrine response which helps mitigate:
dizziness, flu-symptoms, fatigue, and increase blood pressure and circulation.
This is what has helped for me, but your case may be different since there are
different causes of POTS.
To read more about POTS go
to: http://www.dysautonomia
