Tuesday, September 23, 2014

100 miles on POTS

This is my short report. My long report will come later, maybe in a few days when I've had time to relax and think through thoroughly. I just finished 100 miles yesterday at the Yellowstone/Teton 100. The official cut off time was 12pm on Sunday. Lisa Smith-Batchen who runs the race with her fabulous husband Jay 
Batchen, has also been my running coach for the past year. I finished the race at 9 am, 21 hours after the official cut off. I was very surprised at the ammout of support and respect I have received for finishing 21 hours late.

To the POTS (Postural Orthostatic Tacycardia Community), me being allowed to continue and finish 100 miles has given a lot of them more hope then most people can imagine. Let me give you a though. What if you were told you have congestive heart failure? To many people living with POTS this is the quality of their lives. Even though we don't have congestive heart failure, because our autonomic nervous systems are dysregulated this is how we feel every day. We walk around with many of the same symptoms experienced by someone who has congestive heart disease, only it is not our hearts that are diseased (unless POTS is secondary to another disease which for many people it is). 

Before I write the details of my race report, which will include details of how I stay running and able to continue when I have POTS symptoms attack I want to let the average community know why people with POTS are so amazed that someone with POTs could do 100 miles of anything. I don't want to spend a lot do time writing about what POTs is, Dysautonomiainternational.org is an excellent resource for that, but I want to describe how it feels to have POTS so that the grater public can appreciate why running at all seems like a miricle to someone with POTS. 

There are different forms and causes of POTS. I have hyperandrogenic POTS. I've had symptoms in a milder form most of my life, and never realized I was different. Athletically, I have never been the fastest or greatest at anything. I joined track my last year of highschool, and discovered I loved running and because I was never fast, I had never joined before. 

However, even though I could not run 5 minute sprints like the fast girls, I tried and tried and soon when from a 10 minute mile to a 7 minute mile, and discovered I could run for a long time without feeling winded as quickly as the fast girls.

I was an orchestra geek in highschool, and I soon went on to have a career, marry, and start my family.

I played around with running but when my kids were being born it was difficult because I would start training and start succeeding and then get pregnant again and due to POTS symptoms could not continue running safely during my pregnancies. 

When I was done having babies, and my youngest was 5 years old I became serious about running again and 2007 I started running marathons and 2008 I started running 50 milers. 

I had POTS issues that I did not know what they were, I just thought I was not as good as everyone else, and must need to train harder, however the more dedicated I became to training, the slower my speed started getting, until I had a POTS crash in 2010, you can read about that on my running with Dysautonomia page on this blog. 

I was very blessed to find Dr. Liz Joy, in 2009 and to work with dietitian Elena Yorgason who was able to help me strategize and figure out a very calculated hydration and nutrition system for endurance running that I continue to use and adjust according to my bodies needs even though, sadly she is not in private practice anymore. I also feel grateful for Dr. Joy, who never even blinked an eye when I told her I wanted to continue distance running even though I have POTS, and Elena for agreeing to work with my through my pain of a body that doesn't work like everyone else's. I mostly kept running because I never though POTS was something that should keep me from running, and my loving professionals who treated me didn't tell me otherwise. 

Before about a year ago, I didn't really know anyone else with POTS , and I never talked about it because even most doctors don't know what it is and it is difficult to describe and explain to people. I just quietly ran at the back of the pack of races and not being able to finish many, or being to slow to make cut offs, but sti trying and trying and through the who time learning out to be proactive and keep symptoms under control and prevent them when possible. 

Sometimes, I had to fail at a race in order to produce a symtom that I would then have to research and figure out how to control or work with, and recognize the early signs of a symptom when I could still do something to reverse it. It's taken me 4 years of doing this kind of running and DNFing over and over again in order to get through 100 miles. And like the races that I failed at, this 100 mile completion produced some new problems that now I have to research and learn how to prepare so that my next 100 miles will be faster and less painful. 

So back to the thought of running with congestive heart failure: I wake up in the morning, most mornings flu symptoms are present: nausea, sore throat, shaky. I stand up, slowly so that I don't faint when changing positions. I Walk around the house for 20 minutes, eventually I no longer feel flu-like. This is every day of my life. For the first two year, I fought through chronic fatigue as well, and still have times that I battle this. Imagine feeling like You haven't slept for 2 days, every day, even though you are sleeping most of the day, or at least trying not to fall asleep.

Now imaging running for 24 hours or more, when your body has difficulty being awake for even 12 hours a day sometimes.

Imagine that when it is hot outside your blood pressure started going really
High and then really low, and then normal, and then changing all over again, cause nausea, body anxiety, dizziness, and feeling like you are going to die. 

Imagine this. Because your body has dofficulty with positional changes that when you are laying down your heart rate may be 55, but if you stand up and just stay standing for 10 minutes within that 10 minutes your heart rate climbs and climbs to 120-150 and if you don't move you will faint. 

When I'm running flat or down hill, my heart rate is fine, but when I'm climbing hills because of POTS, sometimes i have to slow down a lot, and take frequent breaks as my body has difficulty regulating my heart rate while climbing hills. 

Many of my symptoms i have been able to minimize, and I've found suplements, like Q96, that helps my body to regulate this better, and I'm tolerating heat, sun, and hills much better. 

Now imagine, because your body does not absorb minerals well, you have to mix in 3-10 times the amount  of sodium, potassium, and others minerals than the average personin order to be able to operate for an extended period of this means always a balance of not becoming hyponaturemic or Kalimic but also by bloating and causing GI issues. I'm always battling this from mile 20 and beyond.

Now imagine that your lungs start retaining fluid after about 30 miles and you can't pin it all on one cause, fluid balance issues seem to be the main issue, pots makes it difficult for me to sweat and there for lower my core tempurature and all that fluid builds up. 
I have become better and better at preventing it, or at least delaying the onset, but had never done more than 63 miles successfully before this race, and so the lung issues hit me at mile 71! It took me 22.50 hours to complete 71 miles, well within reason of finishing
At 32 hours had I not had the breathing issues hit. It took me 30.5 hours to complete the last 29 hours. But being allowed to complete it gave me the opportunity to work with my compromised breathing, find things that managed the symptoms, and next time I will know what to do to help it not get so bad. Sodium bicarbonate saved me at mile 97. I started having symptoms of repertory acidosis at mile 93. I did not even know what this was before Saturday. I starred hallucinating, and anything I put in my mouth tasted like pure, burning acid. I also stopped feeling. I had places where my skin was irritate that had previously been burning, that suddenly I had no pain sensation in. 

I had to stop at mile 97 for almost 9 hours where I researched my symptoms, consulted with a professional, and sipped on potassium bicarbonate (because I didn't have baking soda), during that time I eliminated cups and cups of fluid, slept, and returned to normal enough to finish the last three miles in about 90 minutes. Now I know how to prevent this in the future, and I will always carry baking soda along with my electrolyte mix. 

That's all for now, I will write my full report later. 

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