Wednesday, July 18, 2018

Five Years, Ten Doctors, Countless Appointments and Tests: The Diagnosis Is POTS

My middle daughter, Lexi has gotten migraines for as long as I can remember. I think they started back when she was in 6th or 7th grade. They've gotten progressively worse over the years in frequency, duration, and intensity. As a sophomore, she missed so much school that I finally withdrew her so she could finish out the year by taking online virtual classes. It's heart-breaking seeing someone you love suffer especially when there's nothing you can do to help her. Sure, I've taken her to a plethora of doctors. She's had a barrage of tests. We've tried several different medications to both help prevent and to treat her headaches. But it's not only the headaches that have plagued her.

As a freshman in high school, she passed out during PE a few times. After the 3rd time, I made an appointment for her with the pediatrician to make sure there wasn't anything serious wrong and it was just the exercise in the intense Florida heat that had caused the fainting. The pediatrician sent us to a cardiologist to rule out any dangerous heart conditions that might have lead to the syncope. After an EKG and an echocardiogram, the doctor determined that nothing was wrong with Lexi's heart and the fainting was likely due to overheating and dehydration. Her recommendation was for Lexi to drink 2 liters of water a day, and to increase her salt intake by drinking Gatorade and snacking on salty foods like pretzels in order to increase her blood volume and therefore help prevent more episodes of fainting.

Because of the migraines, Lexi was seeing a neurologist who ordered an EEG and an MRI of Lexi's brain to make sure nothing scary was causing the headaches. The EEG was normal, and the MRI was basically normal other than a finding of an enlarged pineal gland. The neurologist admitted she didn't really know what that meant, and referred us to an endocrinologist.

The endocrinologist basically looked at us like we were crazy for seeing her, and told us that an enlarged pineal gland didn't mean anything and they dealt with diabetes and actual problems, and we should just leave. Thanks to the neurologist for wasting our time and money there.

Meanwhile, Lexi was still having frequent migraines. On one (of many) trips to the ER for medication to help stop a migraine that had lasted for 3 days with no relief from any of the prescriptions she had on hand, the doctor commented that Lexi was markedly anemic. He suggested taking an iron supplement and consulting with a hematologist right away. We did. After considerable bloodwork, the hematologist diagnosed her with iron deficiency anemia likely due to her heavy and frequent periods, and referred her to a pediatric gynecologist.

The gynecologist suggested getting an IUD placed to help with the anemia. The doctor also theorized that this treatment could help decrease the frequency of Lexi's migraines. So Lexi agreed, despite how uncomfortable she was with the whole idea. Honestly, at this point I think she would've smeared peanut butter on her head and danced with snakes around a fire if there was even the slightest chance it would make her feel better.

As all of this is going on, Lexi started dealing with depression. I suppose it's hard to stay positive when you lose 2-3 days a week because you can't get up and function. It's pretty easy to get down when you deal with a chronic condition that makes you feel like garbage more often than not. So we added a psychiatrist and some antidepressant medication to the mix.

one of Lexi's SFX creations
My daughter who had a bunch of friends, enjoyed going out and doing things, and was a cheerleader, had a hard time getting out of bed and functioning some days. Cheer made her dizzy and gave her headaches. She missed practice and games. She missed school. She missed life. She was in a kind of pain you can't see. That's when she really started practicing her SFX makeup. Instead of cutting herself to somehow show the pain she was feeling, she turned to makeup as an outlet, creating gruesome and painful-looking designs. Plus, she was able to utilize her artistic talent in an activity she could do while sitting or lying on her floor; one that didn't make her heart pound or her head spin.

The neurologist Lexi was seeing for her migraines had come up with a concoction of meds that had significantly cut down on the frequency and duration of the headaches. Lexi still got them, but instead of weekly, they were now maybe twice a month. Having a debilitating headache for 2-3 days twice a month still stinks, but it's better than losing 3 days every week to headache pain.

Then one day, the summer before her junior year, Lexi and I were running errands. She saw a Big Red Bus and asked to stop so she could donate blood for the first time. When the technician assessed her, Lexi's heart rate was over 100 (you must have a heart rate under 100 in order to donate) so she was deferred. Lexi tried to donate blood two more times over the following months and both times she was deferred because her heart rate was too high. The last time, the technician informed her that her heart rate was 154. "A young, fit girl like you shouldn't have a heart rate of 154. No one should have a resting heart rate of 154. You really need to get that checked out."

So we went back to the cardiologist we'd seen a couple years prior. She did another EKG and then the doctor had the nurse take a set of blood pressure and heart rate readings while Lexi was lying down, sitting up, and finally standing. Her heart rate went from 80 to 144 when she stood up. Upon those findings, the doctor ordered another echocardiogram which didn't show any abnormalities. She also equipped Lexi with a Holter monitor which Lexi wore for 24 hours to monitor her heart rate.

A few days later, the doctor called us and seemed surprised at the Holtor monitor's results. There were some curious findings that prompted her to refer us to an electrophysiologist. So we met with an electrophysiologist who explained his suspicion that Lexi had an arrhythmia based on the Holter monitor findings. He proclaimed that she would probably require an ablation to fix it, but in the meantime, he put her on beta blockers to help with her tachycardia.

The beta blockers instantly gave her a migraine which continued nonstop for several days until we ended back in the ER (after a year with no ER trips for headaches) to get some relief. We met with the neurologist who confirmed our suspicions that the beta blockers could worsen migraines so I stopped giving them to her. The electrophysiologist argued that beta blockers helped migraines, and we were wrong. Let's see here. Lexi hasn't had to go to the ER in a year. The day she starts a new medication, she develops a migraine that doesn't gone away in a week despite all the recovery meds she's taken. Yep, clearly I'm wrong. I mean, what do I know, right? I'm not the one with the MD after my name.

The electrophysiologist ordered an exercise stress test with pulmonary function. It was normal. He had Lexi wear an event heart monitor for 30 days, and it recorded over 150 incidences where her heart rate went abnormally high. The electrophysiologist who originally talked about an ablation because he thought Lexi had an arrhythmia changed his mind and said she doesn't have an arrhythmia after all. He insisted her heart was fine and suggested her high heart rate was all in her head. 

"But I thought the monitor picked up a bunch of abnormal heartbeats," I asked, confused.
"Yes, but it's probably anxiety causing it."
"Nope. She doesn't have anxiety."
"She should just exercise more. She's out of shape."
"Nope. She's thin, fit, healthy, and  she's been in sports her whole life."
"Her heart itself is fine. You should take her to a psychiatrist."

Her legs turn a mottled purple when she stands up. Her heart races. she has palpitations and chest pain. She gets dizzy and sometimes passes out. She has chronic headaches. She missed 41 days of school this year. FORTY-ONE days. That's 8 weeks. A quarter of the school year. Yep, all in her head.

Even though I knew it wasn't "all in her head," there was a little part of me that began to doubt. Could it just be anxiety? She never sleeps well at night. Could it be anxiety causing all of this? She doesn't seem like an anxious person.

After another trip to the ER because Lexi's heart rate shot up to  213 while roller skating, we got a referral to another cardiologist; this time one at Nemours. We met with him, went through her medical history once more.  I ended with this: :We have seen a pediatrician, a cardiologist, a neurologist, a psychiatrist, a hematologist, an endocrinologist, a gynecologist, and an electrophysiologist. It has now been several years of searching for an answer and some relief. And her diagnosis currently stands as - it's probably in her head.

This new cardiologist answered, "It's not in her head. There is no it's in her head here. We'll figure it out."

He did a tilt table test (they monitored Lexi's heart rate and blood pressure and how it changed when she was maneuvered from lying down to an almost completely upright position.) Based on this one, noninvasive, simple test, he was able to give her a diagnosis - POTS (Postural Orthostatic Tachycardia Syndrome.)

Finally, there's a definitive answer! An answer that should not have taken years to obtain! This is why you shouldn't automatically take someone's word, even if that someone has a medical degree. No doctor knows your kid as well as you do. If you feel that something is wrong, keep searching until you find someone who will listen and do what it takes to get an answer.

Now that we have a diagnosis, we can move on to searching for a cause or underlying problems, and treating her symptoms.


Angela M said...

So sorry you and Lexi had to go through all that. That sucks!! How frustrating. So happy you finally got a diagnosis and hopefully they can get her right again. Praying for you and your beautiful daughter that she is able to finally get the help she needs!! And her special effects makeup - INCREDIBLE!!!! She is super talented!!

Suburban Correspondent said...

I am so sorry you had to go through all that to get the right answer! It's so frustrating that we practically have to have a medical degree ourselves as mothers to make sure our kids get the right care.

Melissa Hunting said...

I am so sorry you had to go through all of this, but glad that you have an answer. Is there any connection between the POTS and the migraines?

Erin said...

I almost commented on your last post about her illness to suggest that she might have POTS. My mom has it and it took forever for the doctors to figure out what was wrong with her. She takes a beta blocker which helps with her symptoms. That doesn't sound like an option for you daughter though. I hope they can find another treatment for her.

Sharlyn said...

So glad you have an answer! Please tell Lexi your readers are thinking of and praying for her 💛

Unknown said...

I know three young women who have a diagnosis of POTS. All of them went through the same thing as your family did. Lots of doctors. Lots of tests. Lots of medications. Lots of miss-diagnoses. It would seem to me that POTS needs to be taught better in med school so this doesn't keep happening to people we know and love and read about in our favorite blog. I'm glad you finally have an answer to Lexie's symptoms. Prayers that all the new treatments work quickly and successfully.

Gloria Gross said...

Dawn, I pray that Lexi will be blessed with healing for this autoimmune syndrome. I am so grateful that you finally have had the enemy unveiled so that you can research and find ways to help your beloved daughter.

Moo said...

Hoping for the best for Lexi! I, too, have POTS. I was diagnosed 15ish years ago (Hard to remember), and strongly suspect that I have been dealing with it since high school. If you have any questions on anything, please feel free to contact me. I can tell you what I have learned thru the years. Let me know if you can't find me through my comment and I'll get you my e-mail address. Good luck with everything!

Kelli Hinton said...

OMG. Some of those doctors titles I have never heard of. So I can imagine your frustration.l I'm glad that you were able to find someone that was willing to take the time to review the data and do their own tests. Wishing you both the best in the future as you're dealing with this health concern.

M Dunlap said...

Do you know what they call the person who graduates LAST in their med school class?


Sorry that you met so many of the marginal ones. Now that you have actually found someone good, only go to other doctors that he recommends. Don't get me wrong, they won't criticize other doctors in front of you but they WILL send you to someone they think is good based upon personal knowledge. I have an oncologist, a nephrologist, a transplant nephrologist, a gynecologist, an endocrinologist, a dermatologist, a pain specialist, a neurologist, and various surgeons, some of whom have operated on me multiple times. I never go to anyone that hasn't been vetted by one of the doctors that I have been with for at least 10n years OR by my nephrologist, who has very literally saved my life 3 different times. I wish Lexi the best, it is a long road back.

Unknown said...

My 11 year old son was also diagnosed with POTS in August after 6 months of specialists and similar symptoms as your daughter. But finally answers!! I hope Lexi continues to do better, it gives me hope reading about others sharing their stories...thank you!

Becky said...

Wow, what a crazy journey! So glad you got some answers.

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