OpenHealth Q&A

A Journey Through Health Challenges

Hello everyone, this is my first time sharing my experience here, and I'm feeling a bit uncertain about my situation. I genuinely appreciate anyone who takes the time to read my lengthy account. In October, I fell ill with what seemed like a typical flu—cough, sneezing, runny nose, and so forth. At first, I didn't worry much and went about my daily routine, including my job at a clothing store, which can be quite demanding. Noticeably, my symptoms persisted longer than what I was accustomed to, lasting beyond two or three days, and the runny nose lingered a bit too. I only took a few throat lozenges and otherwise felt normal again. However, by late November, I began experiencing unusual fatigue. I struggled to stay on my feet, my energy dwindled, and occasional anxiety seemed to strike without cause. I tried to brush it off. On November 25th, returning to work after some time off, I started feeling panicked in my car—my heart raced, my mind felt foggy, and it seemed like I might faint. A few hours into my shift, I was unable to continue—the rapid heartbeat intensified, and I felt incredibly unwell, experiencing tingling in my hands and feet. I called for an ambulance, which arrived within twenty minutes. They diagnosed me with sinus tachycardia, noting a heartbeat of 115 bpm. After receiving an IV with salt and sugar, I felt somewhat balanced, albeit shaken up. Yet, the weakness after that incident persisted. I found myself bedridden, battling sporadic tachycardia whether I was active or at rest, and my sleep patterns deteriorated. I took sick leave and visited my primary doctor, who ordered blood tests that came back normal. Feelings of despair set in; I felt utterly exhausted, barely making it to medical appointments. A cardiologist's consultation ensued, where an ECG and echocardiogram showed my heart getting slightly overloaded with a higher bpm. The echo indicated traces of a viral infection near the heart and a mild mitral valve prolapse, while my ejection fraction was measured at 70%. Tests were run for adenovirus and coxsackie virus—cox was negative, but I had an adenovirus IgG count of 0.9, just above the normal threshold of 0.8. My Covid IgG antibodies registered a staggering 818.0, far exceeding the normal value of <33.0. Despite my dire feelings, the cardiologist seemed unconcerned, prescribing verapamil twice a day. Following further worsening of my condition and incessant heart palpitations, a 24-hour Holter monitor test was conducted. The results, though indicating tachycardia, did not seem to alarm the doctor. After a week, I returned; low blood pressure readings, recorded when I felt faint, revealed 90/60. Expressing my continued discomfort, the doctor explained that she couldn’t prescribe me an alternative beta-blocker due to my unusual low blood pressure, upping my verapamil dosage to three times daily instead. While this slowed my heart rate, I still felt significantly unwell and experienced irregular rhythms. I made the decision to stop taking verapamil altogether. The ongoing ECG monitoring showed persistent tachycardia, but again, the doctor showed little concern, suggesting I merely try to “relax.” This left me feeling hopeless. I then consulted a neurologist, reporting dizziness, an inability to remain upright, and blurred vision. His evaluations of my blood pressure and heart rate, both at rest and standing, revealed concerning fluctuations—at rest, my heart rate was still up at 102 bpm, and upon standing, it surged to 150 bpm and then 170 bpm after merely a few minutes. He concluded it was abnormal and noted orthostatic hypotension as a diagnosis, recommending I follow up with my cardiologist. In changing cardiologists, I was greeted by a new doctor who conducted yet another ECG, noting a heart rate of 100 bpm and blood pressure at 115/70. The echo revealed no traces of mitral valve prolapse, only slight mitral and tricuspid regurgitation, and an ejection fraction of 60%. Feeling confused by the conflicting opinions from different doctors left me teetering on the brink of tears in the office, overwhelmed by hopelessness. My symptoms were attributed to POTS, and I was advised to be cautious while rising from seated positions. I felt dismissed yet was instructed to see an endocrinologist, a blood workup, and a rheumatologist. The lab results were again normal: pro BNP <10.0 pg/ml and troponin T at 3.4 pg/ml. At this stage, my tolerance for standing had diminished significantly; sitting felt manageable, but even positional shifts while seated brought on symptoms of weakness and distress. My mental state was deteriorating—dark thoughts overwhelmed me, sleepless nights filled with anxiety plagued me, and my appetite waned. Thankfully, the endocrinologist conducted a comprehensive set of tests, concluding that everything looked fine, even after an MRI of the pituitary gland. Cysts were discovered in the brain, exerting pressure on my optic nerve, but still, I have not seen the rheumatologist. On my own initiative, I began taking Vitamin B complex and made an effort to start eating again, though I remain mostly bedridden. My heart rate continues to fluctuate unexpectedly, but I’ve noticed slight improvements in my energy—however, panic attacks and derealization still haunt me. I can’t shake the feeling that my POTS diagnosis came too readily. I feel fearful that there may be more beneath the surface, and my youth is leading to my symptoms being overlooked. Given that these appointments have all been private (in Europe), I had held onto hope, thinking a direct financial investment would result in better care in this frustrating system. Also, I must mention—I had two instances of standing where I experienced peculiar heart sensations, rapid vibrations, shortness of breath, chest pain, severe dizziness, and a general feeling of being rattled once they subsided. Thank you for listening.

Answers (1)

4/3/2025, 12:41:10 AM

OpenHealth AI

Thank you for sharing your detailed experience. It sounds like you've been facing a challenging set of health issues, and it's understandable to feel overwhelmed when navigating through various diagnoses and treatments. Your primary concerns seem to be managing your symptoms, getting clarity on your diagnosis, and improving your overall well-being.

Summary of Key Points:

1. Ongoing Symptoms: You have persistent fatigue, heart rate fluctuations, and feelings of anxiety.
2. Multiple Assessments: You've seen various specialists, received several tests, and faced conflicting assessments.
3. Recent Findings: Diagnoses of POTS (Postural Orthostatic Tachycardia Syndrome) and minor heart issues, alongside normal results from other tests.

Explanation:

Your symptoms, including rapid heart rate and fatigue, have significantly impacted your quality of life. POTS can cause the heart rate to increase dramatically when standing, leading to the symptoms you've described. Often, it’s linked with deconditioning (not being upright for extended periods), but it can be multifactorial, sometimes involving autonomic nervous system dysfunction.

Given the complexity of your experience, it's important to focus on what you can control while seeking further clarity on your diagnosis.

Next Steps:

1. Hydration & Nutrition:

   • Aim to increase fluid intake (consider electrolyte solutions) and maintain a balanced diet high in salt, unless contraindicated by your doctors. This can help with blood volume and circulation.

2. Gradual Posture Changes:

   • When moving from sitting to standing, do so slowly to prevent sudden drops in blood pressure. You might also consider leg movements before standing (like flexing your feet) to help blood circulation.

3. Monitor Symptoms:

   • Keep a daily log of your symptoms, noting triggers, heart rates, and feelings of anxiety or panic. This can provide valuable information for your healthcare providers.

4. Stress Management Techniques:

   • Consider engaging in relaxation techniques, such as deep breathing exercises, mindfulness, or gentle yoga, tailored to your ability. These can help manage anxiety and improve your mental well-being.

5. Follow-up Care with Specialists:

   • Since your symptoms haven't improved, it might be helpful to continue pursuing follow-up appointments with specialists. It’s important to advocate for an updated evaluation from the rheumatologist and a clear assessment of the cysts on your optic nerve.

6. Mental Health Support:

   • Given your feelings of despair and anxiety, consider reaching out to a professional for mental health support, such as a therapist or counselor who specializes in chronic illness.

7. Keep Asking Questions:

   • Don’t hesitate to ask your healthcare providers for clarity on your diagnosis and treatment plan. It’s your health, and seeking comprehensive explanations is important.

It’s important to take this one step at a time. Many people with similar experiences have found improvements by gradually adjusting their lifestyle and continuing to work closely with their healthcare providers. Let me know if you need more specific information on any aspect of your care.