Unexpected Neuro-Visual Symptoms
Approximately seven months ago, I experienced an unexpected onset of vision issues. My eyesight became indistinct, I struggled to move, and I had an odd sensation in my head. Although I managed to dismiss it briefly, the symptoms persisted. Following this, I developed a relentless headache that proved resistant to over-the-counter medications like Tylenol and ibuprofen. This prompted me to visit a medical clinic, where I was prescribed butalbital, which successfully eased the lingering headache; however, I continued to suffer from several other distressing symptoms: - Visual disturbances, including visual snow. - Perceptual anomalies, particularly at the edges of my vision. - Worsening of vision upon waking. - Eye fatigue. - Difficulty understanding patterns, such as stripes or floral designs; they seem altered. - Heightened light sensitivity. - A sensation of being dazed or disoriented, as if in a dream state, is difficult to articulate. - Occasional hallucinations, especially when gazing at plants or intricate patterns during moments of zoning out. - Impairments in cognitive functions such as thinking, concentrating, and memory recall. - Frequent, localized headaches in various areas of my head. - Recurring dull headaches predominantly located on my forehead. - Presence of a bump on my forehead. - Persistent fatigue. - Increased sensitivity to sounds. - Noticeable sensitivity to motion. - Tinnitus. - At times, I hear clicking or dripping sounds in my head when lying down. - I also detect the sound of my heartbeat in my head while reclined. (After consuming alcohol, this heartbeat sound becomes amplified, and it intensifies severely when using cannabis, prompting me to stop that entirely.) - My heart rate seems to be generally elevated. - My pulse accelerates with minimal physical activity. - Occasionally, my pulse is more pronounced without increasing its speed, sometimes making me grip my phone tighter as I sense it. These symptoms seem to be constant, with some, particularly those related to vision, intensifying in the mornings and easing throughout the day. Others fluctuate depending on my body position, like alterations in heart rate and unusual sounds in my head. I've undergone numerous medical assessments, including CT scans, MRIs, MRVs, EEGs, ECGs, heart monitoring, VEMP, and VNG tests, which revealed only minor findings such as a partially empty sella and cerebrospinal fluid prominence around the optic nerve sheaths, potentially insignificant. I entertained the possibility of conditions like Empty Sella Syndrome or Intracranial Hypertension, though a lumbar puncture has not yet been conducted. My ophthalmologist found no signs of papilledema, and given my profile as a 24-year-old male with a healthy weight, my neurologists are hesitant to diagnose EES or IIH. I tried various medications — nurtec, zolmitriptan, qulipta, and zavzpret — but either they did not work or exacerbated my headaches. I lack typical migraine features: no prodrome, postdrome, aura, or severe unilateral pain. My cardiologist suspects I might be experiencing POTS or orthostatic hypotension, which could be valid, but my initial episode and most of my symptoms hint at a neurological issue. I’m about to start fludrocortisone and nebivolol to address the cardiovascular concerns; I previously took propranolol, which slightly alleviated head pulse and rapid heart rate issues. I plan to have endocrine evaluations to explore the significance of the partly empty sella and I have an upcoming appointment with a neuro-ophthalmologist. I also consider imaging studies for my neck or back to address any potential cervical issues, as well as seeing a pathologist to rule out any toxic or environmental exposures. Additionally, I want to consult someone about the unusual bump on my forehead, as I haven’t experienced any head trauma that could account for it or any of my other symptoms. My medical team is puzzled, and I've seen little progress in the management of my symptoms. I'm at a loss and desperate for assistance; I recently completed my college studies, but this has left me feeling incapacitated, unable to work or engage in daily activities.
Answers (1)
3/21/2025, 7:30:50 PM
OpenHealth AI
I'm truly sorry to hear about the distressing symptoms you’ve been experiencing. It sounds like you are facing a complex situation that feels quite overwhelming. It's important to take your symptoms seriously, especially since they impact your daily functioning and quality of life.
Summary of Key Points:
- Your symptoms span multiple systems, including visual, cognitive, and cardiovascular.
- You've undergone extensive evaluations with largely minor findings.
- Upcoming appointments and tests could help clarify your diagnosis.
Explanation:
Your experience includes a range of neurological, visual, and possibly autonomic symptoms. Given the details you provided, it seems like your symptoms could be related to multiple factors that may not have been fully understood yet. Conditions like POTS (Postural Orthostatic Tachycardia Syndrome) and others affecting the nervous system can lead to such diverse and challenging symptoms. The bump on your forehead also needs to be evaluated as it can contribute to your discomfort and concerns.
Next Steps:
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Continue Neurological Follow-ups: Stay on track with your upcoming neuro-ophthalmologist appointment. Your visual disturbances are significant, and this specialist can help determine if there are underlying issues affecting your visual processing or neurological function.
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Monitor and Document Symptoms: Keep a detailed diary of your symptoms, noting when they occur, their severity, triggers, and any patterns you may notice. This can be invaluable in helping your healthcare providers understand your condition better.
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Explore the Bump on Your Forehead: Consult with a dermatologist or another specialist who can assess the bump. They can determine if it's something benign or if it has neurological implications.
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Consider a Spine Evaluation: If there’s a possibility that cervical spine issues could aggravate your symptoms, discuss imaging studies such as an MRI of the cervical spine with your healthcare team.
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Continue Cardiovascular Management: Follow through with the fludrocortisone and nebivolol as prescribed by your cardiologist. Monitoring how these affect your heart rate and other symptoms will be crucial.
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Endocrinology and POTS Management: It’s wise to pursue endocrine evaluations, especially given the finding of a partially empty sell as this could impact various hormones. If POTS is confirmed, working on lifestyle changes (like increased salt intake, hydration, and physical conditioning) will also be crucial.
Additional Considerations:
- Mental Health: Given the impact of these symptoms on your well-being, don’t hesitate to discuss your feelings of frustration and disability with a mental health professional. They can offer support and coping strategies.
- Avoidance of Triggers: Since you noted that certain substances (like alcohol and cannabis) amplify your symptoms, it’s advisable to continue avoiding these substances.
With patience and ongoing dialogue with your healthcare providers, you can gradually work toward finding relief. You're doing well to seek answers and remain proactive about your health. If you have further questions or need support, feel free to reach out.
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