My Life with POTS
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I’ve mentioned before that I have a chronic illness. Today I thought I would share a bit more about it and the things that I do to help myself. Unfortunately, POTS is getting to be fairly common (or at least, maybe it’s just finally being accurately diagnosed?), and I have had multiple friends reach out after their diagnoses to see what I’m doing.
While I am a nurse, this is not medical advice, this is simply my own experience having lived with this since 2019, when I was hospitalized for passing out in my car after driving home from work.
What is POTS?
POTS stands for Postural Orthostatic Tachycardia Syndrome. In layman’s terms, this means that my heart rate can vary wildly whenever I change positions. This is not the same as Orthostatic Hypotension, which is when your blood pressure drops when you move from laying down to sitting, or from sitting to standing, though they can sometimes occur together. I can be laying down in my bed and simply shifting my legs can make my heart rate jump up.
The average healthy person’s resting heart rate is usually somewhere between 60-100. Before my POTS started manifesting itself, my resting heart rate usually ran in the 50s-60s. Now, my average is in the 80s-90s, and I feel funny if it drops into the 60s.
Doctors and researchers are still learning about POTS. The current understanding is that it is a chronic autoimmune illness that can manifest in a person if the conditions are right. For me, it showed up when I was in both a very toxic work environment and going home to an abusive and toxic home environment. Trying to hold myself together in both places was like piling stress in a pressure cooker, and eventually my body could not handle it any longer, and began to mess with my heart rate. After the initial flare that got me my diagnosis, I used a wheelchair at work and at the grocery store for over a month because walking any length of distance left me gasping for breath.
POTS is also a residual symptom of Long Covid, so there might be a component of it linked to viral illnesses that just sort of live in the body and flare up once they have gotten cozy. Watching patients my age become utterly debilitated with POTS after Covid infections in 2020 and 2021 is why I chose to get the Covid vaccines when they first came out, before it was mandatory at my hospital. I was a newly single mom already working two jobs just to make ends meet, and I literally could not afford to let my POTS get that bad and be unable to work. This is not a political statement, it is again simply my explanation of my lived experiences and the things I do and have done to help myself. I believe in vaccines.
How Does it Effect Me
POTS can be triggered by all types of movement. Sometimes I get dizzy just standing for long periods of time. I can also be absolutely rocking it out at the gym and having an incredible workout, but then I might do a set of Bulgarian split squats (without dumbbells) and suddenly my heart rate jumps into the 130s-140s and I start to get dizzy.
Do I still do the exercise? Yes, sometimes, because I’m stubborn. But I go slower and take much longer rest breaks, and sometimes I don’t complete all 3 sets. I’m still learning to be okay with that.
I am more sensitive to stress now, and if I have a sudden stressful situation (angry patient at work, kids decide to go for a battle of the wills, something scary happens) I end up depleted of all my energy for the rest of the day, unless I can quickly get some protein and salt in me. Recently after a stressful event I ended up sitting on a pallet at a store because I felt very lightheaded, checked my Oura ring app, and watched my heart rate go from the high 80s to the upper 40s. After about 10 minutes I was able to stand up safely again. That hadn’t happened in a long time, thankfully, but does still sometimes give me trouble.
My Personal POTS Supplement Protocol
Quercetin
One of my friends is a nurse practitioner, and she learned that the supplement quercetin can be very helpful with Mast Cell Activation System, which in layman’s terms is basically when your body decides that there is a “Code Red” invader situation happening in your body and the immunity team is required to start the “all hands on deck” protocol. She started it for her own Long Covid, found it helpful, and told me about it.
This supplement saved my life and makes my day-to-day manageable. I started off taking 400mg twice a day, but I’ve moved to 800mg every morning. I have to take it before I drink any coffee, or I will be chasing around my heart rate all day. Last spring I forgot to take it when I was sick with the flu, and my heart rate was in the 130s when I was just sitting on the couch trying to eat a sandwich. Have you ever tried to chew while running a marathon? I haven’t either but that’s what it felt like and that’s when I remembered that I hadn’t taken my quercetin in three days. It started to settle down about two hours after I took my dose.
NAC
In absolute full transparency, I had no idea what this was or what it does when I started taking it last summer. I simply saw an instagram video of someone asking people on the street what they take for their workout and these two women with sculpted arms answered “NAC.” So since my goal with weights is to look like Lady Thor, I bought it and started taking it. At the end of the week, I was able to handle a two-hour bike ride with my kids all over town without my heart racing or being unable to catch my breath. I haven’t missed a day since.
It turns out that “NAC” or N-acetyl cysteine, is an antioxidant and helps reduce the levels of free radicals in the body. This would make sense that it is helpful if the hypothesis is correct that POTS is caused by the body overreacting to….itself. It works for me, so I will keep taking it.
Ashwaghanda
Another well-documented anti-inflammatory, ashwaghanda has been in my routine for years simply because it also helps with stress relief. I add ashwaghanda drops in my coffee every morning, though I’ve also taken the Goli Ashwaghanda gummies and I like those too.
Prenatal Gummies with Iron
When I was first diagnosed, the nurse practitioner recommended water, salt, and iron. Apparently people with POTS often have low ferratin levels. Another doctor recommended I take prenatal vitamins because the chronic stress in my life and because of my POTS had depleted basically everything. I tried regular prenatal tablets but those made me nauseous, so I switched to gummies. In the days before I had a monthly subscription, I could feel the difference whenever I ran out – namely, that I had a difficult time functioning and basically could only lay in bed.
Sea Moss
Sea moss is a supplement that I was introduced to as a supplement good for my hair and nail health, which is why I started taking it (also in gummy form). It’s an algae plant harvested from the Atlantic ocean. As it turns out, sea moss is another supplement rich in iron, as well as calcium and Vitamin C.
Vitamin D
There’s some interesting research in the Dysautonomia world about the correlation of people with various dysautonomia diseases (which includes POTS, among others) having a low Vitamin D level. Evidently, Vitamin D helps regulate the nervous system and prevent some things like the awful blood pressure drop (orthostatic hypotension) that sometimes happens when people with POTS stand up.
Spirulina
Another iron-rich supplement, spirulina is a powerful green high in bio-available iron (yes, more iron than red meat, there is a plant for everything). I don’t take this every day, but I do take it during my period. I find that it helps me have a bit more energy and not feel draggy and depleted.
Salt
I’m a nurse with an extensive background in cardiac specialties, where most of my patients have to limit their salt intake, and many have co-morbid kidney dysfunctions that make fluid management more difficult. I am grateful every day that of any of the cardiac problems I could have, I have the one where I get to eat Fritos and all the potatoes I want.
Salt is an important part of my daily routine with POTS. Salt helps to hold on to water, which expands my blood volume so it doesn’t drop when I move. Salt is also an electrolyte, which helps the body’s electrical system function properly.
I add salt to my food pretty regularly, and regularly drink either Liquid IV or just add straight salt to my water. LMNT has a recipe for a homemade mix on their website as well (it’s under the FAQ). I haven’t tried it yet because I need to order the potassium. I buy my Himalayan salt in bulk from Costco.
Food Choices with POTS
I learned I was hypermobile when I was in my late teens. As a pre-and young teen, I could never stand up straight. My grandpa always used to tell me to “think like Grace Kelly” as inspiration to stand up straight – a comment I have teasingly reminded him of several times over the years since learning I was hypermobile and couldn’t help it before.
As it turns out, there is a connection between hypermobility and POTS. One thing that helps me a lot with my hypermobility is making sure I eat enough protein.
I know the topic of protein intake is a bit of a fad lately, but I aim for 100-150g of protein per day. Since I lift weights, a higher intake of protein helps me counter my hypermobility by building muscles that stabilize me better.
I’ve heard people criticizing the high protein fad with “the real focus should be on fiber,” and to that I say…switch to a plant-based diet and get both!
Tofu, Lentils, Kale, Beans
These foods are all high in iron and protein. They are also all good sources of fiber. And thankfully, basically the foundation of a plant-based diet.
Protein Supplements
There is truly only so much tofu and lentils I can eat in a day before I get tired of chewing. I supplement my meals with protein powders and drinks. My favorite brands currently are Orgain powders and OWYN shakes. I get the vegan Orgain powders from Costco, and the OWYN shakes from my local grocery store. OWYN’s Elite shakes have 32g of protein per shake, and I drink one before every gym session.
I also like to keep IQBARs on hand for an additional snack of 12g of protein.
Limit Caffeine
When I was first diagnosed, I was instructed to stop drinking coffee. For years afterwards, any time I drank any coffee, I would start visibly shaking as if the sips made me vibrate. Finally, and I am still not sure why, I started craving coffee again and took a chance. I started with a weak coffee and worked my way up. Once I was sure I could handle it, I bought a coffee maker again and my morning cup of coffee brings me so much joy.
If I want coffee after my morning cup at home, I have to make sure it’s decaf. I also prefer caffeine-free soda, though I rarely drink soda anyway. When I drink tea, I tend to gravitate to herbal, which is caffeine-free.
Exercising with POTS
Exercising with POTS is a very personal thing and dependent on each person’s tolerance and abilities. These are only my own musings about my unique experience:
I cannot tolerate HIIT classes or fast-paced classes in general. I am generally able to tolerate my weights routines, which I can do at my own pace. I am able to do arm exercises all day long, but I go slower on the leg workouts. I also tend to prefer leg exercises where I am seated. Lately I have been able to do weighted glute bridges, angled leg press, and the single leg glute press where I’m basically lying on my stomach.
I also have to be more gentle with my body than I want to be. If I had my way, I would be in the gym 2-3 times a week for a couple hours. But because so many things impact my POTS, I only go to the gym when I’ve slept well, I haven’t had a significant stressor during the day that drains my energy reserves, and I’ve eaten enough. And being a single mom to two kids and working a full-time job in a hospital, those days are less frequent than I would like.
Last year I bought an Oura ring to help me recognize the difference between when I’m just being undisciplined and when I’m genuinely not able to tolerate the gym. I love it for this reason and have found it to be so helpful in tracking trends and helping me make decisions for my health accordingly. You can buy an Oura ring 4 (what I have) and save 10% when you use this link.
Clothing
Compression
At the hospital when someone has orthostatic hypotension (when your blood pressure drops when you stand up), we usually order compression socks and even an abdominal binder. I have a pair of compression socks, but I don’t wear them very often. I do wear them if I’m having a particularly tired day where everything aches, and they help a little.
I do find that my tight leggings also help here for some mild compression, especially the high-waisted ones.
Natural Fibers
Temperature dysregulation is also a common issue with POTS, and when my tempurature shifts too much too quickly, I can start feeling effects like lightheadedness and the “tunnel vision” aura that happens before I pass out. While my compression leggings are not natural fibers, I do recommend natural fibers for shirts and sweaters. I have noticed a big change in my ability to regulate my temperature when I wear natural fibers like linen, cotton, and (secondhand only) wool. I have slowly been replacing sweaters with cotton and wool options and summer outfits with linen pieces. Being in cotton and wool have really made a difference this winter.
Conclusion
People are still learning every day about POTS and how to help people who have it. I have only scratched the surface of what we have learned so far, and what helps! But these things do help me, and so maybe if you or someone you know has been diagnosed, at least one of these ideas might be helpful for you!
