Seeking Guidance for Ongoing Chronic Health Challenges Before College
I never imagined I'd be turning to Reddit for medical insights, but here I am. For the past three years, I’ve been grappling with severe symptoms, enduring a barrage of tests and procedures, yet I've largely been left without concrete explanations. My condition has recently deteriorated dramatically—just as I'm preparing to start college in three weeks. As I write this, I'm on day seven of relentless vomiting, and I'm desperate for any insights that could help me find answers and improve my situation before school begins. I want to truly enjoy this new chapter of my life, and I'm willing to do whatever it takes to address these health issues. For context, I’m an 18-year-old female with a normal height and weight. **Symptoms**: Below are my most troubling symptoms, highlighted in bold. **Gastrointestinal Issues**: - **Severe constipation**, despite taking the maximum prescribed dose of Linzess (290mg daily). I typically only have bowel movements once or twice a week, with instances of going up to eleven days without one. - **Daily nausea**. - **Weekly vomiting**, sometimes occurring for multiple consecutive days. - Acid reflux, occasionally leading to small amounts of vomit. - Frequent sulfur burps, despite not being on a GLP-1 medication. - Gallbladder sludge found during ultrasound, with no known cause; medication for this issue hasn’t alleviated my symptoms. - **Extreme bloating** that hampers my mobility. - **Unusual weight accumulation in my abdomen**, leading to a pregnant appearance even though I'm quite petite. **Autonomic Symptoms**: - My heart rate variations suggest dysautonomia/POTS (as confirmed by a cardiologist), though my blood pressure remains stable. - I experience tachycardia episodes 1-2 times a month without triggers; during these episodes, my resting heart rate can escalate to around 135, accompanied by heavy sweating and slight shaking, with transient elevations in blood pressure. - Temperature regulation issues. - Intense salt cravings. - Persistent thirst. **Neurological Symptoms**: - **Severe fatigue**: I’m averaging 18 hours of sleep daily. Diagnosed with idiopathic hypersomnia, but the underlying cause is still unclear. - **Frequent migraines**, occurring every few days and varying in intensity. - **Significant light sensitivity**. - A lazy eye. - Motion sickness. - Sudden weakness in my legs. - Intense leg cramps that I have experienced since childhood. **Unusual Lab Results**: - Markedly elevated alkaline phosphatase levels. - High C-reactive protein and moderately elevated white blood cell count. - Mildly raised anion gap and creatinine levels. - Low iron levels that are gradually improving. - Low electrolytes despite consuming a considerable amount of water and salt, which is perplexing. **Testing Outcomes**: - Gastric emptying study showed slightly delayed digestion but no gastroparesis. - Endoscopy and colonoscopy revealed sudden lactose intolerance; I’m now dairy-free, but no signs of IBD, celiac, or other major findings. - Sleep study identified idiopathic hypersomnia, which one doctor suspects might actually be narcolepsy, though the diagnosis was borderline, and given that treatments are similar, a repeat study may not be necessary. - Ultrasound of the abdomen, liver, pancreas, and gallbladder detected sludge in the gallbladder but returned normal results otherwise. - I also want to mention my Jewish heritage; I’m unsure if it’s relevant but thought it worth noting due to potential genetic implications. **Current Diagnoses**: - Idiopathic hypersomnia - IBS-C - Gallbladder sludge **Thank you for taking the time to read this. Your guidance and suggestions would mean so much to me!**
Answers (1)
8/10/2025, 7:01:47 AM
OpenHealth AI
I'm really sorry to hear about your ongoing health challenges, especially with college approaching. Your symptoms demonstrate complexity and require careful attention. It’s important to approach this by addressing immediate concerns while also keeping an eye on your long-term health goals.
Main Points
- Your symptoms, particularly relentless vomiting and severe constipation, signal a need for urgency.
- It's important to consider dietary adjustments and symptom management strategies.
- You may need additional evaluation for your autonomic symptoms.
Explanation
You’ve highlighted several troubling gastrointestinal, autonomic, and neurological symptoms which might be interrelated but can have multi-faceted causes. Given the experiences and tests you’ve undergone, it's understandable to feel overwhelmed and frustrated. The persistent issues with vomiting, constipation, and bloating, alongside autonomic responses, can complicate day-to-day life—especially as you prepare for an exciting life transition.
Immediate, Actionable Steps
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Hydration: With ongoing vomiting, dehydration is a concern. Focus on sipping clear fluids like water, broth, or electrolyte solutions to prevent dehydration.
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Dietary Modifications:
- Low-Fiber Diet: Given the severe constipation, a temporary low-fiber diet may help. This includes refined grains, clear broths, and well-cooked vegetables.
- Avoid Triggers: Monitor any additional foods that may cause bloating or nausea. Keeping a food diary can help identify these patterns.
- Frequent Small Meals: Instead of large meals, consider eating smaller, more frequent meals throughout the day to ease gastrointestinal distress.
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Symptom Management:
- Medications: Discuss with your doctor whether it might be beneficial to adjust your current medications or introduce others that could help with nausea and vomiting.
- For gastroparesis-like symptoms, medications like prokinetics or antiemetics may help, but you need to consult your healthcare provider first.
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Physical Activity: Gentle movement, even short walks, may aid digestion and help manage bloating. However, listen to your body and adapt as needed, especially given your fatigue.
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Temperature and Fluid Balance: Given your issues with temperature regulation and thirst, ensure you maintain a regular fluid intake, but also get enough salt if you've been experiencing cravings.
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Monitor Symptoms: Keep a log of your symptoms, including when they occur and their severity. This data can be invaluable for your healthcare team in making informed decisions during your next evaluations.
Next Steps for Evaluation
- Autonomic Symptoms Follow-Up: Your episodes of tachycardia and other autonomic issues suggest the need for further evaluation by a specialist, like a neurologist or a cardiologist specializing in dysautonomia/POTS.
Emotional Support
It's completely normal to feel anxious about these health hurdles, especially with such a significant life transition ahead. Communicate openly with your friends and family, and consider seeking support from peers or mental health professionals who can help you navigate the emotional aspects of chronic illness.
Your desire to improve your health and make the most of your college experience is commendable. Focus on what you can control and take small, manageable steps towards finding relief. Don’t hesitate to advocate for your health needs; you deserve comprehensive care. Let me know if you need further clarification or additional support!
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