Since my diagnosis, I have tried a lot of different medicines, workouts, and other tips. Some of them have helped me, while others have made me worse. Here are my dos and don’ts for dealing with POTS.
-Don’t touch your bed unless you are about to go to sleep for the night! I cannot stress how important it is to stay moving (even when you feel terrible), because in the long run, laying down will only lead to the worsening of symptoms.
-D0 drink water. It is so important to stay hydrated and water really does relieve my symptoms very much. I drink around 2 liters a day. If you have low blood pressure, you can drink Gatorade. I personally find that too much salt makes me feel worse.
-Don’t overwork yourself exercising. Gradually build up to things even if you feel okay at the time. Pushing yourself too hard can lead to terrible symptoms that can last the rest of the day. For instance, if you haven’t worked out in a week, don’t try to run as long as you can.
-Do exercise! You must stay moving (see do #1). As mentioned before, build yourself up to it. Start out with easy exercises on the floor like stretching/arm rowing then work your way from there. I have been doing 15-20 minutes walking and I am already seeing results. You just have to find what works for your body. Always make sure to stay in your targeted heart rate zone.
-Don’t take long showers. You probably already know this from experience (yikes), but standing in a hot shower can cause dizziness and fatigue. If you hate baths and prefer showering, make sure the water is lukewarm temperature. Also, be sure to keep your legs moving while you stand. You should to aim for no longer than 10 minute showers.
-Do try vitamins. I take the One A Day multivitamin for teen girls and it has definitely helped with my energy and strength. Many POTS patients have low iron, B12, etc. so you should get blood tests done to find out what you need.
-Don’t play around with medicine. This one may seem a little obvious, but what is prescribed for POTS often has a lot of side effects and can cause blood pressure problems. If you are on medicine, make sure you always take the exact dosage and don’t skip. Currently, I am medicine-free. I tried Florinef which helped for about a week, but then it was no longer effective. I also tried Metroprolol but I have horrendous side effects and I stay away from beta blockers now. Work with your doctor to find the right one if you choose to take medicine.
-Do have a routine schedule. I wake up at 6 every morning and go to bed at 10. You will find it easier to go to sleep if you train your body every day. Due to my hypoglycemia, I also have a certain time for my meals and snacks.
-Don’t sleep in. I know it’s tempting to lay in bed until 11 on Saturdays (or any day of the week), but it will only make you feel worse. Too much sleep can cause fatigue for the rest of the day. I find I feel the best if I get up anywhere before 7:15. The same goes for bedtime. Don’t stay up when you know you should be asleep.
-Do get outside. Sunshine always boosts my mood and it is important to be exposed to enough light each day. I try to swing on my porch or walk my dog for 15 minutes everyday.
-Don’t stay cooped up in your house all day. It is so important to still be involved in your life. Let your friends visit you, take a long drive (my favorite thing to do!), or take little trips to the library, store, etc. This is not to say you should go crazy, but within moderation, getting out is good for you.
-Do let people know about your condition. You don’t need to be embarrassed or feel like an inconvenience when you feel bad. If you need to sit down, tell somebody. If you faint often, let those around you know what they need to do. You have to protect yourself and do what is best for you.
-Don’t pay attention to people who aren’t sympathetic or don’t believe you. Only you know your body and the fight you are going through. Their opinion is not going to heal you, so don’t dwell on it. I know that is easier said than done, but try to focus on the people who understand what you’re going through. Join a POTS support group if needed.
-Do elevate your feet. This helps your blood circulate better. When I am especially dizzy, I sit down and kick my feet up. It really does help.
-Don’t lay flat. Ever. I have a bad habit of laying on my stomach and looking at my phone often. Unfortunately, when I sit up from doing that, I feel terrible. It may feel good while you’re laying flat, but it is not worth it once you change positions.
-Do stay positive. I know it seems like your pain is never going to end, but I promise it will get better. Did you know 80% of teenagers’ symptoms get better or completely go away as they grow up? In the meantime, comfort/support other spoonies and help raise awareness for POTS. Your struggle could help someone else. Write a blog, share tips, send inspirational quotes- whatever helps. We are not alone.
-Don’t drink caffeine or take in a lot of sugar/carbs. When you go to eat a meal or snack, just think about what you’re putting in your body. I stopped caffeine before I was even diagnosed with POTS, but my nurse told me it increases your heart rate slightly. If you have a bad habit, you need to break it. On the other hand, some POTS patients say caffeine gives them a boost. Either way, I am going to stick to water.
I would like to end with one of my favorite Bible verses. Jeremiah 29:11 says “For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future.”
Keep fighting
one foot in front of you 