Meet the Patient: Part 1 — Case Study on Postural Orthostatic Tachycardia Syndrome (POTS)
By: BioDesign Wellness Center Staff
November 8, 2019 | Category: Case StudyRequest A Call From Us
Editor’s Note: Meet the Patient is a series we recently introduced on the BioDesign Wellness Center blog to present case studies of actual patients we have treated over the years or are currently treating. Our hope is that these stories resonate with anyone who is or knows of someone struggling with a similar health condition. That would include those who have not received an accurate diagnosis or effective medical treatment, as well as those who may be close to giving up hope of ever feeling happy again.
Note that names and certain other details may have been changed or omitted to ensure patient-doctor confidentiality, but specifics about conditions, diagnoses, and treatments are accurate. Case studies are based on information provided by actual patients and their doctors, and patients have agreed to share their stories. This is our second story in the series and the first part of that story.
Abby was a high school student here in Tampa when she experienced two fainting episodes about a year apart. In both cases, she was told by doctors not affiliated with our Tampa Functional Medicine practice that these episodes were related to dehydration.
The second episode came after a weeklong cruise with her family and resulted in what looked like a seizure. Abby was transported to a local hospital, subjected to numerous tests, and was seen by a neurologist and pediatric cardiologist. The episode was ruled a syncope seizure, which is characterized by a loss of consciousness caused by a drop in blood pressure.
After being released from the hospital, Abby followed up with a cardiologist, who diagnosed her as having hypermobility(joints that can move beyond the normal range of motion). He said that was probably part of the issue with her feeling “off” and passing out. She was told to increase her fluid and salt intake.
From August of 2017 to the beginning of 2018, Abby’s health gradually deteriorated. She experienced more dizziness, became weaker and complained of exhaustion. She returned to the cardiologist, who ordered an echocardiogram. All of Abby’s echocardiograms (a total of four, including a stress test) came back normal. The cardiologist also ordered a tilt-table test.
During a tilt-table test, the patient is securely strapped to a table that quickly tilts the patient into the upright position. In healthy patients, the body regulates heart rate and blood pressure to supply the brain with sufficient oxygen to remain conscious. Patients who pass out after being tilted into the upright position suffer from a condition called postural orthostatic tachycardia syndrome (POTS), caused by dysfunction of the autonomic nervous system. That is the branch of the nervous system that regulates functions we do not consciously control, such as heart rate, blood pressure, and body temperature.
After about 30 minutes in the upright position, Abby started to feel faint. Her cardiologist diagnosed her has having POTS and prescribed a beta blocker and Midodrine to help regulate Abby’s heart rate and blood pressure. (Beta blockers lower blood pressure, whereas Midodrine has the opposite effect — it constricts the blood vessels, thus increasing blood pressure.) Abby found she could not tolerate the beta blocker, complaining that the treatment left her barely able to lift herself off the ground.
Abby was now an 18-year-old high-school senior with a job, who also competed at a high level as a synchronized swimmer. Simply maintaining her daily routines became a major struggle. She continued to swim but had to quit her job because staying upright was just too hard. She didn’t pass out again after the second episode, but the dizziness, nausea, or “flares” (as she and her family called them) kept her from driving or leaving the house. She was too afraid she would pass out. She could be in a store and suddenly have to lie down because her heart was racing, and she felt as though she was going to pass out. She would also get swelling in her lower legs, especially when she was in the shower. Her eyes wouldn’t focus, and she was very sensitive to light.
Abby’s quality of life was nearly nonexistent. As she puts it:
Life as a fully functioning 18-year-old came to a screeching halt. I had to quit my job, driving, going out with friends, working out every day. The only thing I pushed through was synchronized swimming. My body felt okay in the water, and the support from my friends and coaches really helped me get through all of this. I was unable to sit for the ACT/SAT more than the one time I took it, even with assistance, so my college dreams were fading as well.
As you would expect, Abby and her parents continued to look for answers.
POTS was not their only concern. Abby is also glucose and lactose intolerant — as diagnosed through an elimination diet recommended by a friend of the family who is a gastroenterologist — and she also was suffering with acne and eczema. Mind you, Abby has been gluten-free for more than 10 years!
Abby’s long and frustrating diagnostic journey
Like many patients we see at BioDesign Wellness Center, Abby has consulted with numerous doctors and specialists in her attempt to find the root cause(s) of her symptoms and receive effective treatment. By Abby’s count, she has seen at least 11 doctors and specialists, including:
- Two cardiologists: Her current cardiologist has a daughter with POTS. He ordered lab work after Abby flared in his office at the first visit. All of the blood pressure readings were normal, so he wanted to check into other possibilities.
- One endocrinologist: Abby is currently seeing this specialist for monitoring of her cortisol level and two nodules found on her thyroid during ultrasound exams. All thyroid levels normal.
- One rheumatologist: To rule out any autoimmune issues and Ehlers-Danlos syndrome (EDS) — a hereditary disorder of connective tissue characterized by easy bruising, hypermobility, skin laxity, and weak tissues.
- One neurologist: To screen for any neurological issues.
- One audiologist: To rule out any hearing-related disorder that may cause or contribute to dizziness.
- One ear, nose, and throat (ENT) doctor: This particular doctor ran allergy tests (blood-only since Abby was on a beta blocker at the time). She tested negative for any kind of allergy. The ENT did tell her that she has a deviated septum and her nasal passages were very swollen.
- One gastroenterologist: For a consultation.
- One obstetrics and gynecology (OB/GYN) doctor: For birth control to help regulate Abby’s cycles.
- One doctor of chiropractic (DC): Years earlier, Abby had whiplash and would sometimes flare in his office in later years. He did not like the fact that she was in chlorine so much with swimming and advised her that decreasing her swim time might be beneficial.
- One dermatologist: Abby continues to see her dermatologist for acne (including cystic acne at one point) and eczema.
Abby’s doctors could not agree on a diagnosis, which increased the family’s frustration. As Abby tells it:
I was told initially the low blood pressure readings and tachycardia (rapid heartbeat) were related to hypermobility. After the tilt table test, my first cardiologist told me I had POTS, even though it took close to 30 minutes to start to feel faint. My second cardiologist maintains that I have manifestations of POTS, but he doesn’t seem totally convinced that I have POTS. As my health was declining, my parents kept digging for answers and tried every avenue with multiple specialists. A top parathyroid doctor in town also told my dad that POTS is not a diagnosis and to keep looking for answers. I was tested for Lyme disease and other conditions but never received a clear diagnosis or any treatment that significantly relieved my symptoms. Most of the specialists hadn’t even heard of POTS. I was even told it was in my head and just anxiety.
How Abby arrived at BioDesign Wellness Center
After some unusual lab results, Abby’s mother searched online for a doctor or medical center in Tampa with expertise in….
End of Part One. Look for Part Two to appear here next week.
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Disclaimer: The information in this blog post about a person living with POTS (postural orthostatic tachycardia syndrome) is provided for general informational purposes only and may not reflect current medical thinking or practices. No information contained in this post should be construed as medical advice from the medical staff at BioDesign Wellness Center, Inc., nor is this post intended to be a substitute for medical counsel on any subject matter. No reader of this post should act or refrain from acting on the basis of any information included in, or accessible through, this post without seeking the appropriate medical advice on the particular facts and circumstances at issue from a licensed medical professional in the recipient’s state, country or other appropriate licensing jurisdiction.