The feeling of your heart pounding as you prepare for your next adventure. The not so subtle tingle of adrenaline coursing through your body as you take that first step towards the next big goal. The bittersweet exhaustion that sweeps through you when dominating yet another feat.
These feelings are what make an athlete tick. I would more identify as an active person rather than an athlete, as the term “athlete” implies I have a certain level of skills and coordination I simply don’t possess. But I can relate to the intoxicating rush of setting a goal and crushing it.
My bucket list of life is a short novel filled with peaks to climb and endurance biking courses to ride. Paddling, running, jumping, you name the activity and I would be there with bells on. In May of 2018, my outlook on this active life changed dramatically changed when Postural Orthostatic Tachycardia Syndrome (POTS) took over.
The heart pounding, adrenaline rush now came from sitting up or attempting to walk. The bittersweet exhaustion was no longer sweet by any means. My athletic/active life came to a screeching halt overnight and I, like many others, spent most of my time figuring out how to get it back.
POTS is a common ailment that, when read about on Google, doesn’t sound all that bad. An autonomic nervous system disorder that causes improper blood circulation and pooling of blood in the legs. Simply put, we don’t get proper blood flow to key systems like the GI and brain which causes an array of symptoms, most often when standing.
To those who read about POTS it seems like no big deal, we get to lie down and put our feet up. However, I wish that’s all POTS entails. Although POTS is not fatal, it does bring the disability level similar to those who have COPD or heart failure. The entire scope of life as we know it is flipped upside down.
For many, we were running marathons or climbing mountains one day and the next racking up hospital bills with procedures and tests. During my first weeks of diagnosis, I scoured the internet for insight, met others who were facing the same struggles and talked with multiple specialists. The constant piece of advice from them all was to keep moving and that exercise is the best treatment. (Ironic because my entire life had been spent exercising!).
As the decision was made to order a wheelchair, my heart broke. My inner “athlete” was crying to be active so I decided to make a new training plan: conserve salt and fluid levels (two fundamentals for POTS people), stop crying, and get to work!
As I navigate through this syndrome, I contribute my progress and successes to these five things:
For first month after my diagnosis, walking to the bathroom was about all I could handle. I traded out my burpees and deadlifts for banded bed exercises (shown below) and supine yoga. For the most part, I would do a little bit of something each day. On any day that I felt any bit of energy I would do my best to walk outside, mostly the 20 yards to my mailbox. The first time I made it .25 mile I cried with joy.
This success didn’t happen until a month into starting a medication regimen and 3 months post initial onset.
Regular duties of cooking, cleaning and laundry became my new endurance goals. Today I am 8 months post onset of POTS and I can walk 1.5 miles and am doing squats, lunges and steps ups. Everyday is different. Some days I feel I am a warrior and can handle any distance or flight of stairs, while others I revert back to basic fundamentals and rehabilitation exercises.
Advice when programming your exercise regime:
- Programming for progression with POTS will not look the same as standard progressive training.
- Listen to your body, adapt for the days that you are more symptomatic and let go of expectations.
- Understand that exercise is medicine and not to be used to set new personal records. Those of us who were active before POTS have to learn to re-educate ourselves in the wellness approach of exercise instead of the “productive” aspect.
- Get advice from your doctors and physical therapists on what cardiac rehabilitation should look like for you.
*There is a exercise protocol written for POTS that Heidi speaks about; however, I chose a different route as I saw best fit my needs.
Stop talking about your symptoms
This was a tough challenge but a good one I think everyone should incorporate. You can’t move past how crummy you feel if you are always surrounding yourself with the words of defeat. Not talking about symptoms doesn’t make them go away, but it does allow your brain to heal in much needed ways.
This advice was provided during a training program called DNRS (Dynamic Neural Retraining System). DNRS for POTS is based on the idea that our bodies are stuck in a sympathetic, or fight/flight state. Rather than seeing basic tasks, such as showering, cooking, or even standing as “safe,” our bodies now see it as “dangerous,” resulting in a stronger sympathetic drive response. Naturally, more adrenaline in our bodies only worsens POTS. Training your body to appropriately interpret these signals can be done through CBT therapists, but some have had success with DNRS.
Think bigger than your symptoms. This went hand in hand with my DNRS training. Like many sports teams do, visualizing yourself succeeding or overcoming an obstacle is key to achieving. I was eager to do something as simple as grocery shop. I would spend 15-20 minutes visualizing those activities and completing them with success. Over time your brain will believe what you tell it. I incorporated this practice into times of stress or anxiety as I approached tasks that triggered symptoms. This came in handy during the many doctors appointments that follow a diagnosis such as POTS.
Before POTS, I took an Ibuprofen a couple of times a year, if that. I have never been in favor of taking many things other than a daily multivitamin, but I was willing to try anything that might help. On top of POTS, I was also dealing with a prolonged QT heart arrhythmia, making the medication discussion a bit more vital.
My doctors and I have found a nice combination of salt tabs, beta blocker, and fludrocortisone (Florinef). The salt and fludrocortisone help to retain fluid and keep my blood pressure in a healthy range, while the beta blocker keeps the tachycardia part of POTS in check, as well as my arrhythmia.
It makes exercising and cardio much more attainable, while also helping me get a full night’s rest. Compression socks are a must have. I wear knee high for most of the time at 30-40 mmHg and will add full stockings when traveling.
Highlight every victory and allow yourself the setbacks
Being active and having this syndrome is hard. Your inner spirit is screaming to get back outside or to plan the next adventure. The things that helped you feel whole are the things your body simply can not handle at the moment. Depression can come easily in a setting such as this but I encourage everyone to not travel down that rabbit hole.
Although I am not suggesting you ignore your symptoms, I am saying that what you wallow in is of your choosing. You can document and share the hospitals stays and IV sticks, or you can work on building a highlight reel. Your energy will be spent somewhere so my advice is to tune it into the achievements, no matter how small.
I went to the grocery store by myself right before Thanksgiving. It was a short trip but my first trip to drive, go in, check out and come home all by myself. As the checker smiled and said “ have a great day” tears burst from my eyes.
I had done it! I gained a small bit of my independence back.
Although it felt silly, and the checker was completely bewildered, I took a picture and shared with my family. I now have complied a great list of documented success and on my low days I look back. It doesn’t make my symptoms any less severe but it does show me that the low days are temporary.
The drive and persistence that was once put into building a career, dominating a workout or climbing a mountain will now have to adapt. POTS is a reset button of sorts. One we may have not pushed by our own accord but one that was pushed for us.
Look at this as the ultimate training adventure.
The next time you summit that mountain, run that mile or mark off a bucket list item you will embrace the pounding heart rate because it races from excitement, smile with the adrenaline rush because the experience is of your choosing and sleep well with exhaustion because you have worked hard for that bittersweet feeling of victory.
For more information about POTS-friendly exercises, check out these links:
- Supine banded bicep curl: https://www.youtube.com/watch?v=IsbKjqwnDmM
- Supine Upright Row: https://www.youtube.com/watch?v=Ic5Wz57gTUQ
- Supine Lat Raise: https://www.youtube.com/watch?v=2KTniinYvZE
- Supine Leg Press: https://www.youtube.com/watch?v=Thv8O6c8QBM
- Gas Pedal (for calves): https://www.youtube.com/watch?v=fn20tI1sx1E
- Supine Front Raise: https://www.youtube.com/watch?v=-oFH8GJHbyE
- Supine Shoulder Press: https://www.youtube.com/watch?v=EADaasQ8EdE
A lover of all things adventure and currently on the path to healing. Amanda was diagnosed with POTS the summer of 2018 after a small viral illness. Amanda currently lives in Durham, North Carolina, with her husband and puppy children.
Amanda, I am currently working the DNRS program for Lyme induced POTS. I love it. From the stories of other participants, many have completely recovered from POTS. How effective has it been for you? Also do you have any side effects from your medications?
Thank you. Great words. I relate .
Thank you. Great words. I relate .
I had an endocarditis 3 years ago and developed POTS. I used to run half marathons (and a marathon) prior to the illness and now I can’t run more than 2 minutes (going slow) without my heart rate reaching 190. My runs have become run/walks, but I have become frustrated because I would like to do another half marathon and can’t run consistently. Would love to find a running program/schedule that will help overcome this high heart rate issue. Any suggestions?
Hey! Thanks for reading my blog 🙂 I would suggest working with a physical therapist using the Levine Protocol — it’s a gradual exercise tolerance program that can help you return to activities like running. Hope that helps!
My daughter was diagnosed with pots last year she is cross country and track runner any advice. She is now dealing with 220 heart rate when she runs
Thank you SO much for including the videos for supine exercises!! I have had resistance bands for years and never took advantage of them this way!