OpenHealth Q&A

Seeking Guidance: Months of Struggling with Severe Symptoms

I’m a 21-year-old woman with no prior health concerns or surgical history, yet I’ve found myself frequently visiting hospitals—about 15 times over the last eight months. It all began with digestive troubles, including a loss of appetite, nausea, and persistent stomach discomfort. After finally consulting a gastroenterologist, I was placed on a lengthy waiting list for a colonoscopy, initially scheduled for six months later, only to encounter yet another delay, pushing it to November. In the meantime, I’ve endured numerous episodes of feeling faint, heart palpitations, and an overall sense of malaise. Despite undergoing tests like a heart monitor and echocardiogram, nothing abnormal was detected, although my digestive issues continue to persist. In late March, specifically from about March 20 to April 16, I suffered from an unbearable headache that simply would not subside. I sought help at the hospital three times, only to be dismissed as having a migraine. The pain radiated from one side of my head to encompass my entire skull. This situation brought on disturbing vision issues, such as seeing colorful spots and heightened sensitivity to light, coupled with debilitating brain fog that left me feeling detached from my own identity. The right side of my head became so sensitive that even light pressure was intolerable. My memory started to deteriorate, and I found it increasingly hard to recall even basic words—my vocabulary began to dwindle. To make matters worse, I lost my father at the end of March, which overwhelmed me with grief. It felt as if I had lost a part of myself, making it difficult to focus on anything, let alone properly mourn. For 27 days, I was largely confined to bed because of the excruciating headache, with everyone suggesting I visit a neurologist—though that appointment wouldn't happen until September, given my location. I eventually returned to the emergency room, pleading for an MRI, which they performed, but sadly, the findings were normal. This revelation shattered my spirit, as I have been experiencing such profound distress. Reflecting on my situation, I now realize I should have been more assertive in asking for a spinal tap. Despite being brushed off as a healthy 21-year-old suffering from anxiety and mental health issues, I am well-acquainted with both and manage them effectively. Yet, this feels drastically different. Now in July, I question how I’ve managed to keep going while feeling as though my essence has vanished. I exhibit impulsive and uncontrollable behaviors, struggle with solitude, and experience brain fog so intense that it feels like I’m operating someone else’s mind. My ability to hold a job has also been severely impacted. An eye examination determined that my eyes are fine, but I suspect I may be dealing with autoimmune encephalitis, leaving me unsure about my next steps. I’ve been grappling with disorientation, irritability, and aggressiveness. I’ve abstained from alcohol and smoking for months since both exacerbate my symptoms and lead to near-fainting. My memory feels impaired, and my sleep has increased to 14-16 hours a day, a drastic change from my previous limit of eight hours. When I wake up, I feel completely drained and heavy. Additionally, confabulation has been noted by friends and family; they recognize issues with my memory long before I do. I feel like I’m losing touch with my abilities, trapped in daily head pain that refuses to relent. Paranoia and compulsive eating are just two more aspects I could detail further. I’m reaching out for help, desperate for clarity amidst this chaos.

Answers (1)

7/3/2025, 7:31:10 PM

OpenHealth AI

I'm truly sorry to hear about everything you've been going through; it sounds incredibly overwhelming. Your symptoms are concerning, especially given the combination of neurological, gastrointestinal, and emotional challenges. It's important to address your situation thoughtfully and prioritize the most critical steps moving forward.

Key Points:

1. Complex Symptomatology: You've experienced ongoing digestive issues, neurological symptoms, and significant emotional stress following the loss of your father. This multifaceted situation requires careful assessment.
2. Urgency for Follow-Up: While you are waiting for specialty appointments, there are essential actions you can take to advocate for your health and wellbeing.

Explanation:

• Your persistent digestive issues coupled with neurological symptoms like headaches, memory problems, and extreme fatigue could point to various underlying conditions. Stressful life events, such as grief, can also exacerbate these symptoms.
• Given that MRI results were normal, it's important to continue investigating potential causes of your symptoms. Nevertheless, the subjective experience of your head pain and cognitive changes is valid and deserving of attention.

Next Steps:

1. Document Symptoms: Keep a detailed diary of your symptoms, including triggers, intensity, and duration. Track sleep patterns, appetite changes, and cognitive fluctuations. This data will be valuable in upcoming discussions with healthcare providers.

2. Communicate Assertively: When you meet with your neurologist, express all your concerns clearly, emphasizing the breadth of your symptoms, including changes in memory and cognition. Be specific about how these issues affect your daily life and functioning.

3. Consider Wholistic Areas of Focus:

   • Mental Health Support: Seek emotional support through counseling or support groups to address grief and how it’s impacting your mental state. Your emotional health is crucial to your physical health.
   • Gastrointestinal Health Monitoring: Monitor your diet carefully; keeping a food diary may help identify triggering foods. Consider gentle options that are easy on the stomach until you can have further evaluation (like the colonoscopy).

4. Explore Additional Tests: Advocate for more comprehensive testing if symptoms persist, emphasizing your experience and the impact on your daily life. You can suggest a referral to another specialist, such as a rheumatologist for autoimmune concerns, depending on further evaluations.

5. Self-Care Techniques:

   • Hydration and Nutrition: Aim for balanced meals rich in nutrients to support overall well-being. Staying well-hydrated can also help with headaches and general malaise.
   • Mindfulness Practices: Techniques such as meditation, gentle yoga, or relaxation exercises may help reduce stress and improve focus.

Conclusion:

You deserve thorough attention and care for the complexity of your symptoms. Maintain an assertive role in your health journey, ensuring that your voice is heard in medical conversations. Remember, it's important to care for both your physical and emotional well-being as you navigate these challenges. I'm here if you need further guidance or support.