Category: pots

Working Out with POTS: “I feel worse when I do the suggested recumbent exercises, like the recumbent bike or rower. What gives?”

“I feel worse when I do the suggested recumbent exercises, like the recumbent bike or rower. What gives?”

The first thing any doctor will tell you about starting an exercise protocol with POTS is that recumbent exercise is the best to start with. However, if you’re anything like me, you might find that you feel WORSE when doing these exercises. In fact, my first ever POTS symptoms started after spin classes, whereas I could run or elliptical fine. So what gives?

I can’t find any scientific statements on this directly related to POTS, but first and foremost, let me reiterate to LISTEN TO YOUR BODY.

My best guess (based on consulting some friends in medicine and exercise science) is that something about the heart working as hard as it is with less of the body involved means that less of the body is getting blood. Perhaps the gravity is pulling the blood down when sitting on the recumbent and rower more than it is when running, because the blood is continually moving to all parts of the body when running (??) I’m prepared to be entirely wrong, so if you have a real answer PLEASE COMMENT BELOW.

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How is POTS Diagnosed?

POTS stands for Postural Orthostatic Tachycardia Syndrome.

The diagnoses evades many patients for several years, but it is relatively simple.

This diagnostic criteria comes straight from Dysautonomia International:

Diagnostic Criteria
The current diagnostic criteria for POTS is a heart rate increase of 30 beats per minute (bpm) or more, or over 120 bpm, within the first 10 minutes of standing, in the absence of orthostatic hypotension.^1,2,3,4 In children and adolescents, a revised standard of a 40 bpm or more increase has recently been adopted.^4,5 POTS is often diagnosed by a Tilt Table Test, but if such testing is not available, POTS can be diagnosed with bedside measurements of heart rate and blood pressure taken in the supine (laying down) and standing up position at 2, 5 and 10 minute intervals. Doctors may perform more detailed tests to evaluate the autonomic nervous system in POTS patients, such as Quantitative Sudomotor Axon Reflex Test (QSART, sometimes called Q-Sweat), Thermoregulatory Sweat Test (TST), skin biopsies looking at the small fiber nerves, gastric motility studies and more.

Can I Diagnose Myself With POTS?

You can certainly perform the “poor man’s tilt table test” described above, to see if your heart rate increases 30 BPM or more, and take this information with you to your doctor.

Lay down for 5 minutes. Take your HR. Stand up, immediately take your HR. Stay standing and take your HR at 2, 5, and 10 minute intervals. Do not move around or talk during this process.

Sources
1. Postural Tachycardia Syndrome. Blair P. Grubb, Circulation. 2008; 117: 2814-2817.

2. National Institute of Health, Neurological Institute of Neurological Disorders and Stroke, Postural Tachycardia Syndrome Information Page.

3. The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis & Management. Satish R Raj, MD MSCI, Indian Pacing Electrophysiol J. 2006 April-Jun; 6(2): 84-99.

4. Consensus statement on the definition of orthostatic hypotension, neurally mediated syncope and the postural tachycardia syndrome. Autonomic Neuroscience: Basic and Clinical 161 (2011) 46-48.

5. Postural tachycardia in children and adolescents: what is abnormal? Singer W, Sletten DM, Opfer-Gehrking TL, Brands CK, Fischer PR, Low PA, J Pediatr. 2012 Feb;160(2):222-6. Epub 2011 Oct 11.

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inspiration mental health pots

Living with POTS

“Where’s Nikki?”

“Oh, she’s not feeling great tonight.”

“Oh, is she sick?”

“Nah, she just has a thing.”

—

“Hey, can I have about twelve packets of salt?” — me, at every restaurant

If you’ve been around me in the past year for any extended period of time, you probably have noticed some or all of the following: 1. I eat a ton of salt and drink a lot of water 2. I can be super spacey sometimes 3. I get a lot of migranes 4. I sometimes have to cancel plans because I feel icky (tired, dizzy, migranes, confused, any combination of these) 5. I make lots of jokes about 1-4.

However, I’m willing to bet most of you didn’t know any of this, because it’s easy to hide and I don’t talk about it a lot. I’m someone who loves to stay busy. I’m always on the go. I love hanging out with friends and meeting new people. It’s only really noticeable if you spend a whole day with me and see me guzzle water/ throw back salt, or if we’re close enough to hang regularly and I’ve had to cancel once or twice. Well, it’s time to talk about it. It’s a part of my life, but it’s not my life.

This time last year I was diagnosed with POTS—Postural Orthostatic Tachycardia Syndrome. What do all these words mean? Simply put, my autonomic nervous system doesn’t function properly so my blood vessels don’t constrict and blood doesn’t get back up to my head and my heart. This means that my heart has to beat faster to compensate to try to push the blood back up to where it’s supposed to be, rather than pooling in my extremeties (hands and feet, gravity pulls it down and my body can’t compensate). This is why I’m spacey sometimes- POTS takes blood from my brain, and without adequate blood up there, I’m a space cadet. (This is difficult for someone like me who prides herself on being intelligent and competent., so this has been a big learning experience). This also explains the headaches (not enough blood up there) and why I feel bad after exercising (I’m also the girl who ran for an hour every day freshman year of college, so this is a tough one. I love being active). The postural part means that if I’m laying down, my symptoms tend to subside (because laying down counteracts gravity).

What’s the treatment? There’s no cure. But there are a few things I can do. Science.

Drink a ton of water and take salt. Drinking water increases blood volume, which helps put pressure on my blood vessels to constrict. Eating salt (I salt my food and also just throw back handfuls of salt at a time. Travel with me- I carry a Ziploc baggy of it and have gotten some great looks from people when they see me take it out) helps my body better absorb the extra water. Once I took out my little baggy of salt at Disneyland (Katie can vouch for this), poured about a teaspoon of salt into my hand, threw it back and washed it down with water like a champ while three teenagers in front of me in line for Haunted Mansion stared at me in horror. Yo, this is the new drug. Want some, kids? (JK JK drugs are bad. But not salt). I also once did it at a coffee shop in front of the sheriff who had just walked in. He didn’t raise an eyebrow.
Sleep more!
Watch cardio. Stressing my heart too much makes me feel worse, but light exercise is actually a treatment, so there’s a fine balance.

How do I feel when I’m having a flare up? Tired, confused, headachey, spacey, sometimes anxious, heavy limbs, tingling extremities, or any combination of these. I normally feel the worst after exercising. The catch 22? I feel icky and have to lay down/ am bedridden for a few hours or the rest of the day. It mimics depression (and forces me to bail on social situations/ bail on friends), so it’s hard not to get down about it during a flare-up.

How do I feel otherwise? Pretty frickin’ normal & happy! My same old self. Most days I forget I have it, until I have a bad POTS day.

So what does this all mean? I can still live a normal, full life. However, it does mean that some evenings I’ll cancel my plans to go out because my gym workout knocked me out. Or some weekends I’ll have to bail on friends to rest my migraine. There’s definite FOMO that goes along with all of this- I don’t want to miss out. But I’ve also learned that I have to take care of myself.

What do I need? The support and understanding of my community. I’ve never experienced anything but this, but now that I’m meeting more and more new people I feel the need to let people know that this is a part of my life. My flakiness isn’t me making excuses about not feeling great to cancel plans—I have this thing, and that’s just life. I’ve learned that I need to love myself and take care of myself first, and the rest will work itself out. Laying down party anyone?

Peace and love, y’all ❤

diabetes health pots

Salt/ Sugar Sisters

It all started sitting on her floor. She had a needle in her arm, injecting insulin. I held a pill box with 8 pills in it for the day. I tossed the pills into my mouth, washed them down with water, and got up to continue my morning routine. She laughed, “we’re just a bunch of druggies”. I’d never noticed before, because this was just my normal. But it’s true.

Chelsea has type 1 diabetes. I have POTS. We are both dependent upon medication and lifestyle changes to live “normal” lives. But we both live “normal” lives (if you can even call any life normal). Chelsea is dependent upon insulin and glucose. I’m dependent upon a variety of medications, extra water, and salt. We joke that we’re both dependent upon white powders (sugar and salt), which is in some sense true.

If we don’t exercise, we feel crappy. If we don’t sleep enough we feel worse. If we don’t eat right… you get the picture. Self care is a non-negotiable for both of us. In 2016, when most millennials are running at light speed to achieve, socialize and have it all, this can be a hard thing to prioritize. But when it’s what you do to survive, you make it work.

I realized during this time on her floor that Chelsea and I are bonded by a dependence on something outside of ourselves. Other people could go without drinking water or eating sugar. Not Chelsea and I. How does this simple fact change the way that we view the world and live our lives?

We cherish our time on this earth and every day we’re given. We know that it could be gone at any moment, and don’t take anything for granted. Likewise, we value this earth as itself a miracle, nature as sacred and something to cherish and protect *cough* recycle and compost *cough*.
We value people. As autonomous cell-machines that contain the miracle of life, people are just that – a miracle. Every one is different. Every single person has value. Every single person has interests, passions, fears, trials, and victories. Chelsea and I love fiercely and yearn for everyone to see their value and worth, know themselves at their core and express themselves. How does this manifest for us? For Chelsea, this manifests through empathy and dance therapy. For me, through connected, heart conversations and photography.
We don’t sweat the little things. If Chelsea doesn’t take care of her blood sugar or I don’t drink water, we could have (and have both experienced) a medical crisis on our hands. Since we’ve been through these things and made it out on the other side, life’s stresses: the unexpected curveballs and all, don’t really phase us. We’re not superhuman- we still feel the emotions associated with a break up or an apartment lease falling through, but we are able to put those things in perspective.

Is it a coincidence that both Chelsea and I are artists? That we love reading books by Brene Brown, talking about empathy and vulnerability, and loving fiercely? Perhaps. Or perhaps experiencing the fact that we are mortal- that this life is not guaranteed- puts us in a less risk averse position than our peers. We’ve lived a bit more life than your average 23-year olds, so we’re determined to live our lives how our hearts and souls guide us to, not how society prescribes.

Tags diabetes, health, inspiration, medication, pots