OpenHealth Q&A

Concerns Over Ongoing Health Issues: Seeking Clarity

I am a 36-year-old female, married with two children, weighing 125 lbs and standing at 5’4”. I don’t smoke, and I drink only occasionally, about 1-2 times a month. My medical background includes Hashimoto's thyroiditis, hypermobile Ehlers-Danlos syndrome (hEDS), dysautonomia, degenerative disc disease, osteoarthritis, and three bulging discs (two in the cervical region and one lumbar). I've also been diagnosed with autism and ADHD. Throughout my journey with healthcare professionals, I've faced numerous challenges. Since my teens, I have been grappling with various health issues, and only recently have I found doctors who genuinely listen to my concerns. However, my experiences with the cardiologist have left me feeling frustrated and as though my concerns are being dismissed. My neurologist has diagnosed me with dysautonomia and noted that I have experienced several fainting episodes when standing, leading her to refer me for cardiology evaluations. The moment I mentioned POTS (Postural Orthostatic Tachycardia Syndrome), the cardiologist dismissed it and insisted my problem was strictly related to blood pressure, promising to conduct some tests. The tests included: - **7-day Holter monitor**: I was informed the results appeared normal despite having recorded 29 episodes of tachycardia, 11 of bradycardia, and two supraventricular tachycardia (SVT) events, with one reaching 184 bpm. While I was told my peaks were near the maximum threshold, my normal weight seemed to leave the doctor perplexed about what this indicates. - **Tilt Table Test**: I received word that my results were normal, yet I have not seen these findings and the staff seemed to discuss the test’s irregularities, which leaves me uncertain about the interpretation. - **Echocardiogram**: My outcomes were mostly normal, except for a mild calcification of the aorta, which is a common finding in those with hEDS. Despite the various tests, the cardiologist continuously attributes my symptoms to blood pressure issues, and this claim is documented in my medical records. However, my readings indicate minimal fluctuation and often show an increase when standing, making orthostatic hypotension seem improbable. With an upcoming appointment in two weeks, I am preparing myself by reviewing medical literature, Google Scholar, and NIH resources to better understand my situation. I’ve decided to track my own health data over the next two weeks, compiling it into a spreadsheet to create visual representations to share with my doctors. I am seeking clarity: do my symptoms genuinely reflect a blood pressure problem as he suggests? I hope to ensure that my concerns are validated and to find appropriate treatments rather than being overlooked. I am feeling drained, unwell, and anxious, all while juggling my studies in medical school where I am pursuing a degree in Neuroscience, along with managing my responsibilities as a mother. I simply want to improve my health and well-being. It’s my hope that others can see that my situation may not be solely blood pressure-related.

Answers (1)

7/2/2025, 11:20:51 PM

OpenHealth AI

I understand that you're managing multiple health issues and seeking clarity regarding your symptoms, particularly how they relate to blood pressure rather than the possibility of POTS. It’s important to ensure that your concerns are addressed adequately, especially given the complexity of your medical history.

Key Points:

• Your symptoms are complex and can arise from multiple interacting health conditions.
• The cardiologist’s position on blood pressure could reflect a narrow interpretation of your symptoms.
• Tracking your health data is a proactive step that can provide valuable information for discussions with your healthcare team.

Explanation:

Your history of dysautonomia, combined with the symptoms you’ve described, could suggest a condition like POTS, which is characterized by an excessive increase in heart rate when standing. Even with normal test results, your experiences of fainting and tachycardia warrant thorough exploration. It’s common for individuals with conditions like hypermobile Ehlers-Danlos syndrome (hEDS) to have dysautonomia, which complicates the clinical picture.

From your description, it appears that while the tests conducted (Holter monitor, tilt table, echocardiogram) provided some reassurance, they may not fully capture the dynamics of your symptoms, especially if they vary throughout the day. It’s also worth noting that conditions like POTS are often underdiagnosed.

Next Steps:

1. Prepare for Your Appointment:

   • Continue tracking your symptoms, focusing on activity levels, heart rate changes, and any factors that trigger your symptoms. Presenting this data in a clear, visual format (as you're planning) can be very effective.

2. Request Clarification on Test Results:

   • Ask for more detailed explanations of your test results during your next appointment. Specifically, inquire about the tilt table test and the significance of the arrhythmias reported in the Holter monitor.

3. Bring Up POTS Again:

   • Be prepared to discuss POTS and how it aligns with your symptoms. If your cardiologist remains dismissive, consider seeking a second opinion from a specialist who has a deeper understanding of dysautonomia and related syndromes.

4. Self-Care Strategies:

   • Consider lifestyle modifications such as increased fluid and salt intake (if not contraindicated by other diagnoses), wearing compression garments, and gradually increasing your activity levels under supervision, to help with your symptoms.
   • Engage in stress-relief practices, such as mindfulness or yoga, which can alleviate some anxiety related to your health management.

5. Connect with Support Groups:

   • Look for support groups for individuals with dysautonomia or EDS. Sharing experiences with others who understand your situation can provide emotional support and additional insights into managing your symptoms.

It’s commendable that you are advocating for yourself and preparing for your appointments. Remember that seeking clarity and validation is important, and you deserve to have your health concerns addressed thoughtfully. Stay proactive, and don't hesitate to reach out for further assistance or information as needed.