Living with chronic illness: POTS & MCAS

“I feel so energized and healthy!” Those were the words I shared with my husband while in southern Utah on a vacation this winter. I felt alive hiking the incredible rock formations in sunny, 60-degree weather in December!

Sadly, my body started shutting down only days later.

First, my ears clogged so every sound was muffled. Then I got a migraine with aura (blurry vision). For the grand finale, I got so dizzy I couldn’t stand. My husband helped me to the couch where I laid for hours, dizzy and freezing so badly I was physically shaking. I was nauseous and felt so horrible I debated going to the Emergency Room; but getting off the couch required way more effort than I could muster.

Twelve years ago, I developed Postural Orthostatic Tachycardia Syndrome (POTS), a type of dysautonomia, or dysfunction of the autonomic nervous system. My symptoms have been well managed for over a decade. Imagine my shock (and devastation!) to experience such a major flare after all these years.

It took two full years for me to be diagnosed, going to one specialist after another and running countless tests. POTS is a very nuanced disorder, affecting so many aspects of the body and presenting with different symptoms from one person to the next. At the time I was diagnosed, it was still a fairly unknown illness. Thankfully, I eventually made my way to a cardiologist who only need a few minutes to confirm his suspicions.

Until recently, I was lucky to have had only two major flares. My first was when I was donating blood. I was so dizzy I couldn’t even lift my head and had to be taken to the ER for fluids. I’m proud to say I completed my blood donation that day before being whisked off by the EMTs, but it took two weeks for me to recover from that first episode.

The second flare was just before I was officially diagnosed. My husband and I were having a blast riding the roller coasters at Universal Studios. We were there for hours with no issue, but then, all of a sudden, I couldn’t hear, couldn’t see, became incredibly dizzy and nauseous. I barely made it out of the park. Another two weeks for recovery, but I did bounce back.

And then the diagnosis. So I guess roller coasters are out? The cardiologist laughed about that question, given that changes in posture can have a significant impact on the body of a person with POTS. Bummer. Other than that, the cardiologist encouraged me to eat well, hydrate, get as much sleep as I can and avoid stress. OK, that seems doable.

And for ten years, that advice seemed to work. Sure, I had my challenges. I’d get super dizzy anytime I changed postures frequently, like doing a project that required me to squat and then stand up over and over. Yoga practices had to be modified. Exercise in the morning was never an option.

Regulating my body temperature is a challenge, causing me to get dizzy and overheated on warm/hot days and painfully cold, particularly my feet and hands, in winter. My head can be burning up while my feet are icicles! Hence sleeping with a fan on my face and heating pad on my feet! We moved from the southeast to the pacific northwest so my body could enjoy a milder climate.

As an avid hiker, I never knew how my body would respond. One weekend, I went to Mt. Rainier National Park for a couple of days. The first day, I hiked an easy trail outside the park with little elevation gain. My breathing was erratic, my heart rate way too fast, and I was incredibly nauseous. However, the following day, I snowshoed a steep section of the mountain at a much higher elevation with no issues. Such is the strangeness and unpredictability of this disorder!

And though I never knew exactly how my body was going to respond, I was still capable of doing things. Living life. Driving and walking and cleaning my house. Even hiking between two and seven miles almost every day.

Catching up to present time. After my major episode in December, I have struggled to get back to any semblance of normal. I was stuck on the couch for two months because my heart rate would skyrocket every time I would stand. I was lightheaded and shaky, and my body experienced constant internal tremors.

I started practicing yoga nidra, a form of non-sleep deep rest that encourages the parasympathetic nervous system to activate, thereby dampening the sympathetic nervous system, which controls your fight/flight response and is often overactive in a person with POTS.

You’d think that lying still while listening to a person guide you in breathing techniques and a body scan is a waste of time. But somehow, this practice has worked wonders on my body. After two months of an overactive heart rate, which kept me mostly bed bound, my body was finally responding normally (mostly)!

I began to ease back into exercising to help my body regain some mobility and to increase blood flow. I started with light strength training while lying on the floor, focusing on my core and legs. Reclined exercises are helpful for a person with POTS since standing can cause issues with blood flow and elevated heart rate. Later, I worked my way up to using a recumbent bike and rower.

Two steps forward, ten steps back.

I was doing well with my exercises, feeling good in general, and even enjoyed my first slow, short walk in months. It was glorious to walk in the woods on a cool, drizzly Pacific Northwest day. My favorite weather!

Two days later, I had another episode. High heart rate for hours, freezing cold, nausea. I couldn’t sleep and was completely drained the following day. Was the flare triggered by a new supplement my doctor had me trying? Was it because of the change in barometric pressure (yes, even the weather is problematic for people with POTS)? Or my greatest fear, was it because I finally enjoyed a walk through the woods?

A major flare is incredibly taxing on the body. It’s completely draining! But after a week of recovery, I started my physical therapy again, gradually increasing my floor exercises and recumbent cardio. Eventually I increased my time on the rower from 15 minutes to 20. Of course, I couldn’t sleep again that night and felt crummy again the next day. Was it the extra 5 minutes on the rower that pushed my body over the edge?

A week later, I tried another short walk in the woods. The results? Another flare. How did I go from hiking daily to not being able to walk through the grocery store? Physically my legs are capable, but my body freaks out afterwards as if it’s under attack and fighting hard to survive.

I’ve taken my new scooter to the grocery store, through the neighborhood and even on a flat nature trail! These wheels have given me so much freedom!

Making progress with POTS is a slow and steady game. That’s the nature of this illness. So many things can trigger symptoms, and it’s hard to define what they are and if/when they’ll actually cause a flare. Sometimes they do; sometimes they don’t. To make matters more confusing, many people with POTS have other comorbidities. My doctor believes I have Mast Cell Activation Syndrome (MCAS) and Post-exertional malaise (PEM), both common for many POTSies.

Mast cells are part of the immune system, helping to fight infection and promote healing. With MCAS, those cells are released too frequently and, often, for no apparent reason. This overactive reaction can cause itching, swelling, difficulty breathing, headaches, flushing, GI upset, joint pain or muscle weakness, and increased heart rate, among others. So far, the two medications I’ve tried to combat this have exacerbated my symptoms. Such is life with a sensitive body.

With PEM, people experience symptoms after exercise, usually delayed a day or two. Symptoms include exhaustion, headaches, loss of appetite, nausea, cognitive dysfunction and more.

I’ll be honest. I’m very frustrated with my life at the moment. I have much to be thankful for, but I can’t help but wish I could go back to my old “normal” when I was in remission and only had to deal with minor inconveniences. When I could exercise without consequence. When a long, strenuous hike was a normal part of my routine and I didn’t have to get groceries delivered because my body can’t handle the walk through a large store.

I’m optimistic. I do believe that short, steady progress will help me get through this. I hear incredible success stories from people in my online support group who have achieved milestones in health and exercise with the slow and steady approach. I’m hopeful that I’ll be hiking for miles again at some point in the future. And I know that keeping a positive attitude will only help my recovery. Some days are better than others. That’s life.

It has been four months since the major flare that reignited my symptoms. Four months of living on the couch, testing my abilities and being disappointed in my extreme limitations. I’ve started to come to terms with my new normal and am committed to making the most of it. I’ve just purchased an electric mobility scooter that allows me to go for “walks” in the neighborhood and get around the grocery store with ease. I never imagined I’d need a mobility aid at my age, but I’m grateful for it.

I’m glad that POTS is becoming better known than when I was first diagnosed. This disorder is often triggered by a major illness, and COVID has caused a large number of people to become symptomatic. I’m sorry that so many people are now dealing with this illness, but I’m hopeful that the increased research will lead to improvements in care and, maybe one day, a cure.

I’m still trying to figure out this strange illness, and I recognize that every person with POTS is affected differently. Nevertheless, I want to share some things that I have learned along the way.
If you think you have POTS, speak with your doctor. If your doctor is unfamiliar with POTS (most don’t seem to understand it or know much about it), keep searching until you find someone who is.

Typically, autonomic neurologists and cardiac electrophysiologists are seen as the experts most likely to be knowledgeable of POTS, but many general cardiologists and neurologists are also able to diagnose POTS. I was diagnosed by a cardiologist but see a naturopathic doctor who specializes in POTS for ongoing treatment.

You always hear that people today, especially in the U.S., get too much salt in their diets (mainly from processed foods), and that everyone should cut back on salt. However, people with POTS have low blood volume, and salt can actually help increase blood volume. A focus on hydration paired with electrolytes can help immensely! Some people simply increase salt in their diet, but many with POTS need to incorporate electrolytes throughout the day. I’m very sensitive to most electrolytes on the market – they cause stomach upset – but so far, I’m doing well with NormaLyte. The grape flavor is disgusting, but the green apple (my favorite) and orange are both good, and the Pure (non-flavored) is also a good option. Your doctor will be able to advise how much sodium and water you should fit into your day. I drink between 96 and 128 ounces of liquids (water, herbal tea, juice) per day with 2500 to 3000mg of sodium and 500 to 700mg of potassium. Please note that sodium is not the same as salt.

Nine out of ten people with POTS are women. And given that we have less blood volume than is typical, menstruation can be especially challenging. Who wants to lose more blood and fluid every month when we don’t have enough to begin with! At one point, I experienced such heavy periods (menorrhagia) that I was incredibly dizzy for many days during and after my period. I went on a progestin (synthetic progesterone) birth control pill which greatly reduced my flow.

However, I was still having issues with hormone imbalance, and blood results showed that my body wasn’t producing much progesterone at all, and my estrogen levels were also low. My doctor has helped me carefully monitor my hormones, and I have found relief from taking Cortisol Manager, Estriol cream, and Progesterone Pure cream, as well as adrenal and thyroid support.

I also incorporate botanicals into my daily ritual, in the form of herbal teas and tinctures. Though I’m not an herbalist, I’ve done a great deal of research on the herbs that help balance hormones, provide much-needed minerals, calm the body, manage blood flow and help the body manage stress.
Using Botanicals for Balance Throughout the Menstrual Cycle

Sleep affects me more than anything else. I work hard to give myself the best chance of a good sleep, though I’m not always successful. I go to sleep around the same time every night. I sleep in my own room with a fan, noise machine and heating pad for my feet when needed. I try to eat a couple of hours before bedtime (not too late) and not to drink too much right before sleeping. I read a boring book so I’ll fall asleep easily, and if I wake up during the night and can’t go back to sleep, I go back to the boring book to try to settle my mind. I experience hormonal nightmares, which can be the greatest cause of not getting back to sleep. If the reading doesn’t help, I try breathing exercises, and if my stomach is feeling a bit off, I have a small snack to settle my belly. Sleeping with my upper body elevated helps with acid reflux and the heart flutters I experience fairly frequently.

As for eating well, I gave up caffeine and alcohol years ago and do not regret it one bit. I do have to limit my dark chocolate intake, which is a real sacrifice, but trust me, the shakiness experienced after too much chocolate is a quick reminder to cut back. In general, I avoid processed food and try to limit refined sugars. I’m a vegetarian and tend to enjoy a lot of seeds, nuts, beans, fruits and veggies, with fish on occasion and eggs from my neighbor’s chickens on the regular.

POTS causes slow motility, and the constant bloating is unfortunately something I still haven’t found a solution for. I’m currently on a gluten free and dairy free diet – ugh, life without cheese is just depressing! I have only seen very minor improvements with this restriction, though my doctor says I need to give it at least a month, and I’m not there quite yet. I’m also trying to pay attention to which foods set off my MCAS. This guide from The Chronic Fatigue (ME/CFS) Clinic at Johns Hopkins is helpful for incorporating a low-histamine diet.

No matter what, it’s imperative to eat smaller meals throughout the day rather than a few larger ones. The body uses blood for digestion, so large meals can cause a variety of problems for people with POTS, including dizziness/lightheadedness, shakiness and increased heart rate.

I’m grateful that I don’t need to work. The stress of maintaining a job while living with chronic illness would be immense. Instead, I volunteer much of my time to my local humane society, particularly in managing their social media and other communication efforts and helping process adoption applications. I’m able to do all this from the comfort of my couch, and the team is very understanding when I need to take a day or two off to recover. Being able to volunteer gives me purpose and allows me to engage in something I’m very passionate about. When I’m feeling well, I enjoy fostering dogs. Unfortunately, that’s currently on hold while I’m still recovering from these flares.

Easier said than done, but since pretty much any illness can exacerbate POTS, it’s helpful to do whatever you can to avoid being around people who are sick. I get a flu and covid vaccine every year.

I don’t know if it’s the air pressure, greater likelihood of dehydration, or the stress and all the walking/sitting/standing, but air travel is a killer for my body. In the past, when I was in remission, I was able to navigate the walks through the airport and all the standing required without much issue, though I often felt exhausted, bloated, and sometimes had allergy-like symptoms for several days afterwards.

After my major flare in December, I had to travel from Utah to get home to Washington. As you can imagine, it was a serious challenge because I was still so lightheaded. I flew out of Las Vegas where it was 70 degrees, and I was bundled in a puffy jacket, gloves and hat because I was freezing. Such a weird body! Thankfully, the wheelchair service provided at the airport made the travel doable. We ordered a wheelchair in advance and had no issues getting one at check-in in Vegas. And one was waiting for us in Seattle on the jet bridge. There is no way I could have made it home without the wheelchair service, and I will be forever grateful for the kind staff who helped us.

Yoga Nidra has had a profound impact on my recovery. This practice provides a reset of the nervous system and is incredibly beneficial for those with POTS but also for anyone dealing with stress, anxiety, grief and other forms of illness. I recommend incorporating this into your self-care routine.

The facilitator I have found that I like best is Ally Boothroyd. She offers a large collection of videos on YouTube ranging from short meditation exercises to two-hour insomnia practices. I typically practice with a 25 to 50 minute video each day. My favorites are her moon series and winter solstice series. Some of her recordings include specialty music, like a sound bath, some are words only, and others include nature sounds.

A lot of POTSies swear by compression garments, specifically ones that come all the way up to the abdomen. Given my issues with constant bloating, I can’t stand anything but very loose clothing. But if you have POTS, it’s certainly worth giving compression garments a try.

It can be helpful to understand your heart rate and other symptoms throughout the day. My doctor suggested I use a Polar armband and Visible app to observe trends and help me with pacing. Through the app, I manually track various symptoms, while the armband continuously monitors my heart rate. Based on the severity of my symptoms, how well I slept and my trending heart rate, the app offers suggestions on whether I should rest that day or if I have the freedom to be more active. The app also tracks pace points throughout the day. The higher my heart rate, the higher the exertion and the increase in points. I can limit my activity if I notice my points are getting too high and going outside my recommended range.

Do I recommend the Visible app? I’ll probably only keep the app for three to four months while I’m getting new systems in place and hopefully finding consistency. The monthly fee is not something I want to pay forever. However, I do believe that the real-time heart rate data is valuable and is something that most fitness trackers aren’t able to offer. Cons: It doesn’t provide sleep analysis, and it takes a second to reconnect sometimes. But otherwise, my experience with this app and armband has been positive.

This is my greatest challenge. I was such an active person before my symptoms returned in December and it’s incredibly difficult to know what my body is able to do now that won’t cause another flare. Every flare sets me back at least a week, so slow and steady is the name of the game.

Exercise is important for all people, but it’s especially helpful for those of us with POTS because it helps stimulate blood flow. We just need to be very cautious in how we proceed, particularly those of us with PEM and folks just starting an exercise program.

Recumbent exercise is recommended to keep the blood from pooling in the legs and taking a long time to reach your brain since our veins don’t properly constrict to push the blood back up the body.

So how do you get started with recumbent exercises? What exercises are recommended?

There’s a lot of information out there, particularly about the CHOP protocol (developed at Children’s Healthcare of Philadelphia for young people with POTS), but honestly, it’s pretty confusing. So let me share what I have found to be currently working for me.

I try to do floor exercises three days a week along with recumbent cardio three days a week. When I was just getting started and when I’m not feeling my best but still able to exercise, I only do the floor exercises and skip the cardio. Modifying your exercise based on your body’s ability that day is crucial.

For the floor exercises, I’ve adapted a routine developed by Mandana Fisher, PT, DPT (2015). I switched out the trunk extension for a full lotus pose as it feels better on my back, and I removed the reverse push up because it’s painful on my shoulder. Take a look at the spreadsheet I use and feel free to adapt it so that it will work for you.

My goal is to eventually do the full routine three times, doing 20 reps of each exercise, though I haven’t been able to do it quite yet. On days when I need to rest, I might select a few light exercises to keep my body moving without pushing myself too far. Some days, I’ll do the full routine but skip the planks and the glute trunk lean, as they push my heart rate too high. I have certainly learned the hard way how important it is to listen to your body! It’s much better to make small increases rather than doing too much on the days you have energy. Push myself too far, and I’ll flare and be down for a week and then slowly have to build back up again! Not worth it!

As for cardio, start with very short sessions (just a few minutes) at the lowest level and keep your pace light. Eventually (slowly) you can start increasing the amount of time you exercise and the level. The general recommendation seems to be to start at 3 minutes and add a minute each week, but honestly, every person is different. Some people will start at one minute while others might be OK to start at 5 or 10 minutes. Increase gradually.

Back to the CHOP program. According to this plan, you start with recumbent exercise and shift to upright cycling/walking after 4 months or so. However, keeping in mind that every body is different, many POTSies will tell you that this program moves a bit too quickly than most of us can handle. Progress includes a lot of ups and downs, time off during illness/flares and slow recovery periods. The program also includes strength training using weights, which might not be doable for many folks starting out.

Before my symptoms kicked up again, I was pretty healthy, spending time hiking daily and weekly incorporating yoga, barre, kayaking and other exercises. At that time, I would have been able to handle the CHOP program without issue. However, after my major flare, I’m essentially starting from scratch. Lifting weights is outside my abilities right now as my sensitive body triggers a flare after very little activity. So, for me, I focus on just the floor exercises (see the spreadsheet linked above) and light recumbent cardio and am not trying to go through the CHOP protocol, though the concepts are the same in my lighter routine. Exercise in a recumbent position. Gradually increase as you can. Listen to your body.

I have a rower and recumbent bike at home because going to the gym is too much effort for me right now. However, this equipment is certainly an investment. Some people in my support group have found a mini pedal tool that is inexpensive and can be used at home while you sit in a chair. Some POTSies love swimming but I don’t have access, and since I’m very sensitive to heat and humidity, many public indoor pools are not an option for me. Check around; you might be able to find a good deal on a used bike or rower.

Dr. Betsy Grunch – This is a good video with visual explanations about POTS to better understand the basics of this disorder.

The Dysautonomia Project – POTS is a type of dysautonomia, a dysfunction of the autonomic nervous system. This website has great information to better understand dysautonomia.

Dysautonomia International – This nonprofit focuses on research, physician education, advocacy and support.

Standing Up To POTS – Research, advocacy and support.

Facebook Support Groups:
POTS
Exercising with POTS Dysautonomia