Dysautonomia (autonomic nervous system dysfunction), the umbrella under which postural orthostatic tachycardia syndrome (POTS) fits, is no joke. Before I was diagnosed, I wondered if I was ever going to be okay again any time I experienced particularly bad moments of headaches, dizziness, lightheadedness, fatigue, brain fog, abnormally high heart rate, and trouble standing or exercising. Many people with POTS even have frequent fainting spells, and the syndrome can range from mild to entirely disabling.
It took many years for me to get diagnosed. As a young, healthy-looking woman who lives with anxiety and a few invisible physical illnesses, it was hard to get practitioners to listen long enough to realize that these vague-sounding symptoms weren’t just an overreaction to an already existing problem. Also, because POTS has only been a diagnosable syndrome since the mid 1990s, many practitioners don’t think to look for it; they may never have heard of it, even though it’s likely that more than a million Americans experience it. This summer, I finally got heard out, diagnosed, and am now getting the treatment I have needed for a long time.
The incredible news I’ve learned from my care team at Mayo Clinic is that this syndrome is something that can become subclinical over time, and some young people even grow out of it. I won’t have to be on medication for this my entire life – in fact, I’m scheduled to get off of the heart medications I take in less than 2 years! My life is radically transforming because POTS is manageable with careful and consistent work, and now I want to pass on information about how to manage these symptoms medically and non-medically in quite simple ways.
- Talk about your symptoms and get tested, if you haven’t already.
- Learn about what kind of dysautonomia you might have, and what subclass(es) of POTS you might have, because that will affect your treatment plan.
- Ask about medications that could help manage your symptoms if they are more severe. Some people don’t end up needing medication by virtue of doing the lifestyle changes mentioned below, but some do. There are multiple classes of medications for POTS, so if one doesn’t work for you, it’s possible another will.
- Get information about when you should worry and when you should not worry. My doctor told me only to worry if my heart rate went up above 180 bpm for a half hour – that’s when I should seek help. Otherwise, it’s just the normal wonky stuff, and it will pass. Unnecessary worry only makes it worse.
However, let me tell you – the medications are only a bridge, and they shouldn’t be the only thing you do to manage this. The majority of the work will come from simple and effective lifestyle changes. Try one or try many of these with the okay from your practitioner. I have incorporated all of these into my daily (or near-daily life) life with huge success.
- Drink around 12 cups of water a day, especially around the times of doing things that increase your symptoms like
- Before getting out of bed for the day
- Before, during, and after physical activity, and
- Before changing physical positions.
- Consume extra salt by putting it on your food or having electrolyte-rich drinks, especially around the time you exercise (Pedialyte, Powerade, or my personal favorite, Nuun tablets). The amount depends on your individual case, and that’s up to you and your practitioner. I’m supposed to consume 4x the recommended amount of salt, which is a hoot and a half. Quick snacks that help in a pinch are saltines, pretzels, french fries, Nuun tablets in water, popcorn, potato chips, peanut butter, and eggs with salt on them.
- Gradually begin to exercise, building up a little bit each day – a minute each time, even a minute a week, starting with recumbent exercises like recumbent biking and moving up to standing exercises like the elliptical over time, until you reach the point where you are doing cardio multiple times a week for 30-45 minutes.
This may sound entirely impossible right now. This takes a long time to build up to – weeks and months. You have to do this with your practitioner because where to start and where to end up as your goal totally depends on who you are and the kind of symptoms you’re facing. Here’s an example of what an exercise plan for POTS can look like. Let me tell you – this has been, by far, the most helpful thing for me because it gives me energy (this TOTALLY surprised me at first) and confidence in my body, and proper cardiovascular training helps your heart rate get lower on average over time. Start where you are and do only what you can – five minutes of appropriate exercise are better than none.
- Wear compression shorts to help keep blood flowing all the way up to where it’s supposed to.
- Get up from seats and other changes of position a little bit more slowly than you’re used to.
- Learn to breathe more deeply and regularly with an iPhone app like Belly Bio, which walks you through basic biofeedback training. This helps slow your heart rate down over time. Do this for at least 10 minutes a day.
- Work out the brain fog by finding some favorite little cognitive training activities like puzzles, word games (I like Boggle – or Word Streak, as it’s called on smartphone apps), number games, and so on.
- Do certain stretches upon getting out of bed that are known to help with blood flow. You can do these with weights or not, and do up to 25 repetitions.
- Bicep curls
- Quad stretches
- Bicep curls
- Eat 6 small meals rather than 3 large meals so that your body’s blood flow doesn’t go all to your gut.
- Sleep on a consistent schedule for a total of about 7-8.5 hours for best rest.
- Get a good cognitive behavioral therapist to talk about the anxiety that often comes with symptoms so that you know that your mental health is being looked after and that you’re not limiting yourself with unnecessary fear.
- Keep a shower stool for bad days if you struggle with rough symptoms in hot and humid places. Use hot tubs and saunas only sparingly for the same reasons.
- Cut caffeine, stimulants, drugs, and alcohol as much as you can.
- If you’re feeling particularly symptomatic, here are a few moves and repositionings you can do with your body:
- Cross your legs or ankles
- Pump your fists
- Place one foot on a chair to contract your thigh muscles, and
- Squeeze your butt cheeks.
May you find the symptom relief you seek!