A couple weeks ago, our teen was diagnosed with POTS– a type of autonomic dysfunction. Since she’d been suffering from chronic migraines for a couple of years, was seriously ill with pneumonia in the fall and started spitting up blood in December, she hadn’t felt well for a long time. Her lack of energy, headaches, extreme nausea and other symptoms weren’t just because she has POTS. She had a lot of other things going on and she learned to live with them the best she could. However, now that we know she has POTS, there are all kinds of things we’re supposed to be doing and it’s an adjustment.
Why? She has another chronic illness on top of POTS so it’s not simple for us to just follow the plans we were handed from the Mayo Clinic. We’re having to adjust and tailor those recommendations to meet her health needs every day. And, each day there’s a judgment call that needs to be made- is today’s symptom POTS? Is it the start of a migraine? Or, is it that blasted blood that still hasn’t stopped and comes up by the mouthful. It’s not easy. Here are a few of the things that we’re finding to be a struggle.
Fluid intake– Rosie’s supposed to drink 2-4 liters of fluid a day. This makes sense for both the POTS and migraines. Unfortunately, if you feel like you’re going to throw up (or are), it doesn’t happen. She’s also encouraged to drink 8 ounces of salty fluid before she gets out of bed. Rosie and the morning are not friends. Most mornings she wakes up with a headache and it takes a while (and medication) to adjust. We have water, Gatorade and pretzels by her bed. We’re trying.
Salt– Before the diagnosis, we were a no salt family. Now, we’re supposed to add as much salt as Rosie can tolerate to all her food so she retains the fluid she’s drinking. Unfortunately, she can taste it and she’s not a fan. She’s also losing her desire to eat pretzels as that’s been our go to snack to get salt in her. I, however, have eaten a couple of bags. Not good.
Daily Exercise– This is a struggle. My dancer can barely make it out of bed, to school and get homework done. We used to joke about, “I can’t, I have dance.” Now it’s just, “I can’t.” Today we came up with a plan to get her to dance next week- even if it’s just for an hour. Gotta start somewhere. Oh, and don’t even get me started on the days that she has migraines. She can’t get out of bed. How is she going to exercise at all?
Not overdoing it– If you overextend yourself, both POTS and migraine symptoms can trigger but, how do you know where that threshold is? With Rosie’s migraines we know there’s a pattern. If she has a huge dance weekend, we know it will spark a migraine the Tuesday or Wednesday following but now it’s a little confusing. Are the symptoms she’s showing POTS or migraines? There’s so much overlap it’s hard to tell. Plus, how do you tell your teen who loves to dance and has to miss most of it that she can’t compete with her team?
Eliminating stress– We’re discovering that what we thought was anxiety in the past was really a spike in blood pressure caused by POTS creating an anxious reaction. This past weekend, Rosie missed turns and got upset on stage. She came off crying. When she got upset her blood pressure soared and it caused her heart to race, made her dizzy and made her feel anxious. Here’s the good news- we knew what happened and could address it with water, salt and breathing. Here’s the bad news- stress triggers her migraines too. Just another piece of the puzzle for us to figure out.
Sleep- Rosie is a terrible sleeper. She has been since she was little. She’s supposed to get nine hours of sleep at night. Impossible if she dances until 9:30. She’s also not supposed to nap. Guess what she’s doing right now? She is sound asleep on the couch. Here’s the problem- I don’t know if she’s needing to sleep because she’s getting a migraine or if she’s just worn out so I’m letting her take a cat nap. Such a dilemma.
I’m confident that Rosie and I will be able to figure out this whole POTS thing and find solutions that work for her. I also believe that we’ll beat this. I’m an optimist.