OpenHealth Q&A

Seeking Insight on Complex Post-COVID Health Issues

Hello, Esteemed Medical Professionals, I find myself reaching out in earnest hope for guidance regarding my complex health situation. I am a 39-year-old female, weighing 190 lbs and standing at 5'8". I have a history of vaping and my current diagnoses include rheumatoid factor-negative rheumatoid arthritis, potential RS3PE, fibromyalgia (a label I contest), idiopathic intracranial hypertension following venous sinus stenting, ADHD, generalized anxiety disorder, and a suspected mixed connective tissue disease. In terms of medication, I am currently prescribed Adderall and Humira, the latter of which I haven't commenced yet due to my recent cessation of methotrexate, hydroxychloroquine, and folic acid. To manage my chronic pain, I have turned to kratom since pain management prescriptions were not available to me, which previously led to suicidal thoughts stemming from incessant pain before I discovered kratom. **Addressing My Post-COVID Complications:** I'm experiencing symptoms that appear to suggest vascular or nerve compression issues. My challenge lies in eliciting curiosity and thorough investigation from healthcare providers rather than facing dismissal. **Historical Context:** - **Before COVID**: I was relatively fit and had no history of migraines. - **First COVID Encounter**: The initial infection was severe, marked by a high fever and a year-long loss of smell, subsequently leading to daily headaches that evolved into frequent migraines. - **Infections**: Total of three confirmed infections; I have been vaccinated twice alongside one booster. - **Neurological Treatment**: Various therapies were attempted including Maxalt (which provided temporary relief), Emgality (effective for about six months), and Botox, yet the migraines escalated to 20-25 days a month. - **CSF Considerations**: Given persistent drainage issues, I insisted on tests for IIH, despite resistance from providers due to my symptoms not aligning with typical presentations. After nine months, I finally secured an MRV that confirmed venous sinus stenosis, with a lumbar puncture indicating an opening pressure of 45, leading to a final diagnosis of idiopathic intracranial hypertension after the placement of a venous sinus stent, which alleviated the migraines and visual disturbances. **Current Concerns Post-Stenting:** - I am now enduring considerable joint and total body pain. - Raynaud’s phenomenon has developed since my COVID infection. - There’s a suspicion of an underlying connective tissue disorder based on my family history, positive antibody tests, and elevated inflammatory markers. - **Primary Symptoms**: These include numbness and tingling in my extremities based on position, persistent numbness in my toes for the past six months, pressure and fullness in my neck, dizziness with head movement or in certain positions, significant head pressure with minimal tactile pressure over the right jugular vein, a sensation of heaviness in my head, neck discomfort, and joint crepitus. I’ve noticed these issues worsen with certain positions, like chin tuck, rotation, or lying flat to watch television, yet improve when looking directly upward. - Other symptoms include POTS-like manifestations (heat sensitivity, fluctuations in blood pressure, and difficulty with physical activity), exacerbated pain when standing for more than thirty minutes, severe cognitive fog, and swollen, reddened hands, alongside rising inflammation markers with ANA and Lyme tests returning negative results. A new diagnosis of RF-negative rheumatoid arthritis has also been established. **Challenges in My Medical Journey:** - The neurosurgery nurse practitioner merely suggested a flexion-extension X-ray to check for cranio-cervical instability. - I inquired about the possibility of an upright MRI with flexion/rotation, or at the very least dynamic venous Doppler studies for jugular assessment, but those requests were denied. - My concern is that focusing solely on bony issues might overlook potential soft tissue or vascular compressions. A request for a referral was met with resistance, leaving me feeling imprisoned in a cycle of inadequate evaluation. **Seeking Your Expertise:** 1. Considering the information provided, do my symptoms align more with a potential obstruction in venous outflow (such as jugular vein compression), cranio-cervical instability, or some other positional neurovascular phenomenon? What tests should I advocate for? 2. What strategies can I employ to engage healthcare professionals regarding this intricate and uncommon health presentation in a manner that fosters curiosity rather than defensiveness? As a seasoned RN with over a decade of experience, I previously identified my IIH correctly, yet I fear being perceived as just another overly-inquisitive patient. While I understand that online research is not a substitute for professional expertise, I cannot afford to spend additional years feeling overlooked. Any advice you could offer would be immensely appreciated.

Answers (1)

8/17/2025, 6:02:00 AM

OpenHealth AI

Thank you for sharing your detailed health journey and concerns. It's clear that you're dealing with a complex set of symptoms following your COVID-19 infections, and I appreciate the thoroughness with which you've presented your case. Let’s focus on addressing your immediate questions and concerns.

Main Points

1. Symptom Analysis: Your symptoms may indicate issues with venous outflow or cranio-cervical instability.
2. Strategies for Advocacy: You can employ specific techniques to better communicate your medical needs with healthcare professionals.

Explanation

Your history of severe migraines post-COVID, alongside symptoms like numbness, dizziness, and changes in blood pressure, suggests that there may indeed be a vascular or neurological component that hasn't been fully evaluated. The development of Raynaud’s phenomenon and your persistent joint pain further complicate the picture, possibly indicating an underlying connective tissue disorder.

Given your concerns about potential complications such as venous obstruction or cranio-cervical instability, it’s essential to advocate for appropriate diagnostic tests. These may include advanced imaging techniques or specific vascular assessments like dynamic venous Doppler studies.

Next Steps

1. Focus on Specific Tests:

   • Dynamic Venous Doppler Studies: These can assess blood flow and identify jugular vein compression.
   • Upright MRI with Flexion/Rotational Views: This can help evaluate cranial-cervical junction issues and potential soft tissue impacts.

2. Engage in Productive Communication:

   • Prepare Your Case: Write down your symptoms, their frequency, and how they've changed over time. This can help convey the severity and persistence of your issues.
   • Ask Open-Ended Questions: Instead of asking for specific tests outright, you might say, "What diagnostic options do you think could help clarify my symptoms?" This encourages dialogue rather than defensiveness.
   • Involve a Patient Advocate: If possible, bring someone with you to appointments for support. They can help articulate your concerns and ensure your voice is heard.

3. Self-Care and Monitoring:

   • Track Symptoms: Keep a detailed log of your symptoms, including what worsens or alleviates them, to share with your healthcare provider.
   • Incorporate Gentle Movement: To manage pain and improve circulation, try low-impact exercises such as walking or stretching within your comfort limits.

Final Thoughts

Navigating the healthcare system with complex symptoms can be very challenging, especially when feeling dismissed. By clearly articulating your concerns and being proactive about your care, you're more likely to receive the attention and evaluation you deserve. Remember, advocating for your health is both your right and an important step towards finding the relief you seek. If you need further guidance or specific resources, feel free to ask.