OpenHealth Q&A

Need Assistance with Ongoing Symptoms

Over the past few years, I've been experiencing an increasing array of symptoms, yet my medical tests consistently come back clear. I’m a 21-year-old woman with a challenging health history: - When I was 9, I was diagnosed with rheumatic fever, which affected my heart valves. Fortunately, they have healed, and I no longer require penicillin injections. - I've had eczema for quite some time, but it escalated dramatically three years ago, affecting my entire body, which led to my current treatment with Dupixent. - Diagnosed with POTS at the age of 12, I have noticed a worsening of symptoms that makes me question if what I'm experiencing is truly POTS anymore. To combat this condition, I aim to drink around 80 ounces of water daily, utilize compression socks, and take salt tablets. My medication regimen includes: - Adderall for managing ADHD (ruled out as a cause for my tachycardia) - Dupixent - Two Allegra daily (to manage hives) - Various creams for eczema - Salt tablets - Mirena IUD Here’s a summary of my current symptoms, organized chronologically: - Since being diagnosed with POTS at age 12: I've experienced dizziness upon standing, an elevated heart rate when standing, and inadequate blood flow to my extremities. - Periods from ages 14 to 16 were extremely painful, lasting up to 12 days with severe cramps. - In recent years, I've suffered from: - Intense eczema flare-ups - Persistent brain fog - Chronic fatigue - Cramping: Though I no longer have periods due to the IUD, I still endure awful cramps, which I initially suspected might be appendicitis or kidney stones, but it appears to be just another aspect of my condition. - Nausea: I experience vomiting episodes ranging from 5 to 30 times a day, accompanied by constant nausea. - Over the last year, my condition has notably declined: - Extreme fatigue: I feel perpetually drained. - Migraines: I deal with severe, prolonged headaches. - Potential seizures?: I have hesitated to speak to a doctor about this due to fears of losing my driver’s license. Episodes include zoning out, feeling unable to keep my eyes open, and experiencing eye fluttering, with witnesses suggesting it resembles seizure activity. My step-sister, who has epilepsy, believes these might be seizures. While I can still hear faintly during these moments, my vision and speech are significantly impaired. They last around 8–10 seconds but can occur multiple times in a day, usually with a premonitory feeling I can’t control. - Aggravated POTS symptoms: I frequently faint, feel as though my surroundings are spinning even while sitting, and my heart rate has become erratic, occasionally dropping to the 40s before rising again to over 100. - Joint pain: The only abnormal result from blood tests is low vitamin D, for which I take daily supplements, but this joint discomfort may still stem from that deficiency. I constantly feel achy and sore. I may have overlooked some details, but this description is already lengthy enough. Any advice or guidance would be greatly appreciated. I'm simply exhausted from feeling this way, and it’s incredibly challenging to work full-time. I previously managed two jobs, spending long hours on my feet—working over 60 hours a week—but now I can barely muster the energy to get out of bed.

Answers (1)

7/13/2025, 12:40:42 AM

OpenHealth AI

I'm sorry to hear about the multitude of challenges you're facing with your health. It’s understandable to feel exhausted and overwhelmed given your complex history of symptoms and conditions. While it can be frustrating that tests have come back clear, there are still strategies you can adopt to help manage your situation more effectively.

Main Points:

1. Symptom Management Focus: Prioritize identifying and addressing symptoms like fatigue, brain fog, and gastrointestinal issues.
2. Structured Symptom Diary: Begin tracking your symptoms, triggers, and the context in which they occur.
3. Lifestyle Adjustments: Implement and modify daily routines to increase your energy levels and stability.

Explanation:

Your symptoms indicate a possible overlap between your diagnosed conditions (such as POTS and eczema) and new developments (like persistent nausea and potential seizure-like episodes). Chronic fatigue and brain fog can significantly impact daily functioning, and it’s essential to approach your well-being holistically.

Next Steps:

1. Keep a Symptom Diary: Note the frequency, duration, and context of your symptoms (e.g., time of day, activities leading up to them). This can help identify patterns and triggers, which you can discuss with your healthcare provider.

2. Prioritize Nutrition and Hydration:

   • Ensure you're eating balanced meals that include sources of protein, healthy fats, and complex carbohydrates, which may help stabilize energy levels.
   • Continue your hydration efforts, but also consider consulting a dietitian for additional strategies tailored to your specific needs, especially regarding salt intake for POTS.

3. Manage Fatigue and Activity Levels:

   • Implement rest periods during your day, especially if you work full-time. Consider a modified work schedule if possible.
   • You may benefit from pacing yourself, breaking tasks into smaller, manageable parts, and allowing for frequent breaks.

4. Physical Activity: Engage in gentle exercises, such as walking or stretching, when you feel able. This can help improve circulation and energy levels, particularly for POTS symptoms.

5. Monitor Neurological Symptoms:

   • Given your description of potential seizures, it’s essential to address this concern with a healthcare provider. They may recommend evaluations or monitoring, which could clarify the nature of these episodes without jeopardizing your driver's license.
   • Document these occurrences in your symptom diary as well, noting any potential triggers or patterns.

6. Seek Support: Consider connecting with a support group or online community for individuals with POTS or similar symptoms. Sharing experiences can provide emotional support and varied coping strategies.

It's essential to communicate these detailed observations and impacts on your daily life to your healthcare provider. While the journey may be challenging, understanding your health better through tracking and managing symptoms can lead to more effective treatment options. Let me know if you need further assistance or more specific resources!