Lots of lightheadedness (POTS Symptom #5); also, how I was diagnosed with POTS

For me, lightheadedness was a big clue that something was possibly quite wrong with my body.  In the fall of 2012, I started getting lightheaded anytime I stood still: waiting in line at Walgreens, chatting with friends in the kitchen, tucking my kids in bed, singing a hymn at church, scanning shelves of books at the library, looking at clothes at a store.  (Hence, the stool!)  I also got very lightheaded any time I lifted my arms (putting on mascara, grabbing something from a high cabinet, hugging my husband’s neck).  A low moment came when I was waiting in line at Goodwill with my then-4- and 6-year-olds and slumped to a puddle on the filthy floor to avoid passing out.  When asked if I was okay, my then-4-yr-old Ella put her hand on her hips and sassily told everyone, “It’s just a headache.”  Um, not exactly.  (More about that in a future post: Horrendous headaches were my first big clue something was wrong.)

Lightheadedness feels like I’m woozy; the world is a bit fuzzy; my body is unsteady; I need to sit or lie down!

I started telling my doctors about this, and off we went on a version of “If You Give a Mouse a Cookie.”

If your physical therapist sees how lightheaded you are during exercises, especially when you raise your hands above your head, he will refuse to treat you anymore and send you to your primary care physician.

If your primary care physician has you sit up straight and breathe in and out as he listens to your chest, you will almost pass out, and he will send you to your neurologist.

If you see your neurologist, he will suggest that you are highly anxious and prescribe Xanax.  You know people with mental illnesses sometimes don’t realize they are unwell, so you think, “Hmm… maybe I’m highly anxious and just don’t realize it.”  Turns out, you’re not, and Xanax doesn’t help.  Repeat to yourself: POTS IS NOT ALL IN MY HEAD.

If you go to your orthopedist and tell him how raising your hands makes you lightheaded, he will have you demonstrate to compare the left side vs. the right side.  When you almost pass out after keeping your right arm in the air for a few minutes (though seated), he will get very excited about this phenomenon.  He will send you to a leading vascular surgeon.

If you go to the vascular surgeon, he will also get excited by how lightheaded you get, how your heart races, and how your blood pressure drops.  He will want to devise a test for you so he can study what’s happening.  A couple weeks later, he calls to tell you you are beyond his scope, and he will make an appointment with a cardiologist.

If you go to a cardiologist to tell him about your dizzy spells, he will correct you and tell you to use the word “LIGHTHEADED.”  Dizziness is more like the world is spinning around, which is not really how you feel.  That was helpful. He will also say (when asked if you could have signs of POTS) that he would NOT treat POTS, because he is a CARDIOLOGIST.  Oooooo-kay!  (Many people with POTS are treated by cardiologists.)

If you get extremely discouraged and try a brilliant new internist, she will send you to an electrophysiologist.  You will tell both of them all your symptoms, which you’ve been reluctant to share in case they think you’re crazy.  (Repeat to yourself:  POTS IS NOT ALL IN MY HEAD!) They will have you do a tilt table test, and after 12 minutes of standing upright, you will pass out.  Your body’s mixed response will have them decide to send you to Vanderbilt University’s Autonomic Dysfunction Center.  And boom, now we know!  Lightheadedness DID mean something was wrong, and I have POTS and neurocardiogenic syncope (mixed dysautonomia).  Turns out, my brain is not telling my body how to work properly to get enough blood to my brain, hence, lightheadedness!

You are thankful that lightheadedness, a key symptom of POTS, is often relieved by lying down.  Although you are now maxed out on meds and have improved, you still get lightheaded every day while upright (though less so) and are glad you’ve learned to manage by sitting a lot, using a wheelchair, and having your trusty stool.

Have you ever gotten the runaround for a medical issue?

No wonder I'm lightheaded when I tuck the boys in... 6 feet in the air!  Thanks for putting the kids to bed most nights, Mark!
No wonder I’m lightheaded when I tuck the boys in… 6 feet in the air! Thanks for putting the kids to bed almost every single night, Mark!

8 thoughts on “Lots of lightheadedness (POTS Symptom #5); also, how I was diagnosed with POTS”

  1. I hear ya, Kristi! What a well written post–I really enjoyed reading it. 😉 And, by the way, your boys’ beds? UM, THE COOLEST THING I’VE EVER SEEN!

    1. Thanks, Chelsea! We were talking with the kids once about challenges in our lives and asking them what has challenging. One said, “Getting up in bed is kind of hard for me.” Oops! Sorry, Son! 🙂

  2. I am so sorry to read your version of “If You Give a Mouse a Cookie” and that you had to go through such a difficult rigamarole (and possibly think or have insinuated that you were crazy…) in order to get an accurate diagnosis!! I am thankful that you FINALLY got to the right hands and continue to pray for the correct medical professionals who will have wisdom and insight into how to best handle your case. May God provide treatment and a CURE to alleviate this condition in you and many others!!!!!

    1. Kate, I really thought I must be crazy some of that year– I mean, this has been so bizarre!!! I know I was diagnosed much faster than some people– definitely thankful God heard the prayers of His people and was merciful to work through so many doctors!

  3. Wow, Kristi. Since we no longer live in the same area I had no idea about the depth of what you (and Mark–the whole cleave thing 🙂 have been going through. Your journey is remarkable. God is faithful. The MD pass-off is one I’ve seen over the years in my days as a hospice social worker. Breaks my heart, but I’m so thankful you’ve landed with a team that is helping you. I’m reading your earlier posts with great interest both medically and because we love your sweet family so. I still remember when Mark came and stayed with us in CT when he was checking out our church plant/study. We fell in love with him first, then quickly with you. Three kids later, and even POTS, God is good. Much love to both of you. Amy & Tony

    1. Thank you, Amy! We have so many sweet memories of CT… and now I love seeing your home redo updates on FB! 🙂 This has been a strange, hard journey, but I love looking back to see how God has been faithful in so, so many ways. Thank you for encouraging us over the years! Hugs to you both!

  4. “If you give the mouse a cookie” sounds like my story right now. Just saw my cardiologist last week. One of his questions asked…. “Do you feel anxious or stressed?” Had to do stress test and blood work.

    Sent from Windows Mail

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