It’s been almost three years since I was diagnosed with POTS. Sometimes, I need to do things differently than the way I used to before my life with POTS. And you know what? That’s OK.
The biggest thing I’ve learned since my diagnosis is that I needed to become a master of my condition. To be so in tune with my body that I know what it needs and what it doesn’t so that I can manage my condition as best as I can and still enjoy my life.
With that said, this blog post reveals my best pro tips for living with POTS. These POTS pro-tips are based on either my personal experience or everything I’ve learned about POTS in the past three years that I think others might find helpful. Check ’em out!
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POTS Pro Tips for Living With POTS
- When you’re waiting in long lines or standing in place for an extended time, shift your weight from side to side. If you’re grocery shopping, lean on your shopping cart for support. My feet — and sometimes my legs — often hurt when I need to stand still for a long time.
For example, I go to a lot of museums as someone who lives in New York City. I absolutely love going to The MET! But standing at museums for hours on end almost always triggers symptoms. Though, I’ve gotten better about managing it now and reducing my discomfort, at least for the first hour or two.
I always wear comfortable shoes (or ones with inserts), and compression socks (15-20 or 20-30 mmHg) help a lot with reducing fatigue and pain in my legs and feet. I’ll also shift my weight frequently, do calf raises, or keep moving to lessen blood pooling. Oh, and taking sitting breaks at benches always helps! I just pretend I’m thoughtfully examining a painting or collection of artifacts and nobody knows the difference!
Shop Sof Sol shoe inserts.
Shop VIM & VIGR compression socks.
- Make a POTS travel bag filled with all the essentials you need to manage POTS symptoms while you’re out of your house. You can use your purse, or you can buy a small backpack to carry around with you. What you keep in your bag will vary by person, but some things to consider include electrolyte replenishers and a large water bottle, salt capsules and salty snacks, Sea-Bands for nausea relief, and cold packs in the summer.
Shop for these items below:
Liquid IV hydration multiplier
Vitassium electrolyte fastchews
Sea-Bands for nausea relief
Instant cold packs (disposable ice packs)
- Get a medical ID bracelet, and make it a habit to wear it any time you leave your house, especially when alone. In the case of an emergency, the information on these bracelets can alert medical professionals of your health conditions and guide their treatment methods. This pro tip for living with POTS is especially important for people who are prone to fainting.
Shop medical ID bracelets.
- Depending on the severity of your Postural Orthostatic Tachycardia Syndrome, getting around may be a challenge. People with mobility challenges may consider getting a mobility aid, like a cane or a wheelchair, to use when needed. It may also be worth seeing if you can get a handicapped parking tag.
Shop lightweight folding transport wheelchair.
- Taking showers can be really difficult for some POTS patients because of the heat and the prolonged standing. If that’s the case for you, then you may consider adding a shower bench to your bathtub. I used to use one of these when I couldn’t stand (from a nerve injury, not from POTS), and it was tremendously helpful.
Shop bathtub transfer bench.
- Always, always, always rise from a lying or seated position SLOWLY! I bolded this sentence because this pro tip for living with POTS is a very important habit for POTSies to practice. This goes for getting out of bed in the morning, standing up after working a desk job, and getting up after having your hair done at the salon.
If you do get up too fast and become symptomatic, carefully lower yourself back down and perform at least one fainting counter-maneuver, such as tensing all your muscles. In fact, another POTS pro tip is learning fainting counter-maneuvers and doing them before standing to reduce fainting and lightheadedness.
- While I acknowledge that exercise may not be helpful for all people with POTS, research shows that it is still one of the best ways to treat POTS symptoms naturally for many people. I followed the Levine Protocol for several months to gain exercise tolerance before branching off and doing my own workouts.
That said, exercise did help improve my symptoms. So, I prioritized making a home gym for myself. This includes free weights, resistance bands, and cardio equipment like a stationary bike. In the past, I’ve tried rowing and found that that is an excellent seated workout too. (I just can’t fit my rower in my NYC apartment!) If you’re on a budget or find exercise to be really challenging, you can consider trying a mini exercise bike pedaler to get you started.
Shop for home gym equipment below:
Under the desk mini bike pedal exerciser
Set of five resistance bands
Free weight dumbbell set
Magnetic rowing machine
Magnetic stationary spinning bike
- Monitor your time spent standing throughout the day. Are there times when you could do something while seated instead? For example, prep food for meals while seated at the kitchen table or pull up a barstool to a counter island if you have one. Sit on the toilet when you’re brushing your teeth, and fold laundry while sitting on the couch.
In my bathroom, I used to keep a small stool to sit on while I styled my hair and applied my makeup for the day. I used to get so symptomatic just getting ready for the day, but this simple hack really helped me!
- If you’re feeling particularly symptomatic, you can try lying on the floor and putting your legs up against the wall. Mainly, I’ll do this after I exercise too hard (oops!) or if it’s really hot and I’ve been standing a long time. It can help with circulation, lymph flow, and blood pressure stabilization. I also notice that it lowers my heart rate and helps with post-exercise recovery, but this is only my personal experience.
- My next pro tip for living with POTS is to space out your activities and errands. To do this, it helps to have a planner or a journal. Stuffing too many activities into one day can trigger POTS symptoms either immediately or the day after. When I overdo it, say walking all around New York City for an entire day because the weather’s nice and there’s so much to do, I feel completely wiped out the next day. Read up on the Spoon Theory if you’ve never heard of it before!
- Anxiety and nervous, jittery feelings can often be a symptom of POTS because of what’s going on physiologically in a POTS patient’s body. (Tachycardia, tremors, catecholamine release — check out this study!)
I know whenever someone says, “Just breathe,” when you feel anxious can seem like the most unhelpful advice. I know. I’ve been that person, who in their head is shouting in response, “I am breathing!” BUT. Hear me out. Recently, I read up on the vagus nerve and how stimulating it can help calm the body by activating the parasympathetic nervous system.
And, in my experience, when I breathe slowly through my anxiety — like really stick with it and breath at a slow, even pace through the squirminess of anxiety — I begin to calm down. My racing pulse slows, and the anxious, tight feeling in my chest and stomach loosens its grip on me. I feel better.
But it’s a skill I’ve had to cultivate. At first, it didn’t work at all, hence the “I am breathing!” comment given in exasperation. But I learned this breathing practice on the Calm App that really helps me. I inhale for four beats, hold my breath for four beats, exhale for four beats, hold my breath again for four beats, and repeat. It helps me keep time to tap two fingers on my wrist or the palm of my hand.
I was amazed that the first time I did this in the midst of a panic attack, it actually worked to calm me down. Now, it’s something I keep practicing to help control anxiety symptoms and stimulate the vagus nerve.
For more information about the four major lifestyle changes you can do to help treat POTS, check out the blog pages below!
- See how a high-salt diet can help POTS symptoms in certain patients.
- Learn how much fluid you should drink every day to support healthy blood volume.
- Explore the Levine Protocol and how this gradual exercise program can help exercise intolerance and improve symptoms.
- Discover the benefits of wearing compression for POTS management.
Let’s keep this list of pro tips for living with POTS going! If you’ve got a tip that works well for you that’s not listed here, drop it in the comments below. I will probably come back and update this page as I remember more tips—or maybe discover new ones!
As always, I hope this content is helpful. Until next time, take care friends!