OpenHealth Q&A

Not Likely Migraines: A Personal Experience

Approximately seven months ago, I experienced an unsettling shift in my health. My vision became blurry unexpectedly, and I found it difficult to move, accompanied by an odd sensation in my head. Initially, I was able to dismiss it, but the symptoms persisted. Eventually, I developed a relentless headache that did not respond to over-the-counter medications like Tylenol or ibuprofen. Consequently, I sought help at a medical clinic where I was prescribed butalbital, which provided some relief for the headache, but many other symptoms continued unabated: - Visual snow - Visual disturbances, particularly in my peripheral vision - Reduced vision upon waking - Eye fatigue - Difficulty comprehending patterns, such as stripes or floral designs, which might appear surreal - Increased sensitivity to light - A sensation of being in a daze or dreamlike state, almost as if concussed, which is hard to articulate - Occasional mild hallucinations, particularly when staring at natural elements or intricate patterns - Difficulty in thinking, concentrating, and retaining information - Irregular, pinpoint headaches occurring in various locations on my head - Frequent dull headaches centered on my forehead - A noticeable bump on my forehead - Persistent fatigue - Higher sensitivity to sounds - Increased sensitivity to motion - Occasional tinnitus - A peculiar clicking or dripping sound in my head when lying down - Audibly hearing my pulse when positioning myself horizontally (The pulse sound intensifies after alcohol consumption and becomes overwhelming if I smoke marijuana, which I have since stopped.) - An overall elevated heart rate - My heart rate can escalate with minimal physical activity - Occasionally, my heartbeat becomes noticeably intense, causing me to grip my phone tighter due to the sensation. Most of these symptoms are ongoing, with some worsening in the morning and easing as the day progresses, particularly the visual disturbances. Others seem influenced by my posture, affecting my heart rate and the sounds in my head. I have undergone several diagnostic tests including CT scans, MRIs, MRVs, EEGs, ECGs, a heart monitor, VEMP, and VNG; however, the findings were largely unremarkable, revealing only a partially empty sella and elevated cerebrospinal fluid around the optic nerve sheaths, which might be inconsequential. I have pondered the possibility of Empty Sella Syndrome or Intracranial Hypertension, yet have not undergone a spinal tap. My ophthalmologist found no signs of papilledema. At 24 years old and not overweight, my neurologists express skepticism regarding these conditions. Medications including Nurtec, Zolmitriptan, Qulipta, and Zavzpret have either failed to alleviate my symptoms or have exacerbated my headaches. I do not experience any typical migraine warning signs such as auras or severe unilateral headaches, which are usually characteristic of classic migraines. My cardiologist suspects I may have Postural Orthostatic Tachycardia Syndrome or Orthostatic Hypotension, or possibly another form of dysautonomia. However, the initial onset and a majority of my symptoms lean towards a neurological issue. I am starting treatments with fludrocortisone and nebivolol to address the cardiological symptoms, while previously, propranolol provided slight relief from the voice of my pulse in my head and the rapid heart rate. I plan to undergo endocrine evaluations to exclude the partially empty sella. Additionally, I have an appointment with a neuro-ophthalmologist and may pursue imaging for possible cervical issues. I also wish to consult with a pathologist to eliminate potential toxic or environmental factors. Lastly, I intend to seek attention for the odd bump on my head, which lacks an identifiable injury as a cause. My medical team appears perplexed, and I have not seen substantial progress in managing these symptoms. Any insights or assistance would be greatly appreciated. Just as I graduated college, my health took a downturn, leaving me too incapacitated to work or engage in daily activities.

Answers (1)

3/21/2025, 4:30:41 AM

OpenHealth AI

I'm truly sorry to hear about the series of distressing symptoms you've been experiencing for the past several months. It's understandably frustrating, especially as you’ve sought multiple opinions and tests without clear answers. Here’s a condensed overview addressing your concerns:

1. Symptom Overview: Your symptoms, including persistent headaches, visual disturbances, and heightened sensitivity, along with the historical medical evaluations, suggest a complex interaction of neurological and possibly autonomic factors. Conditions such as Intracranial Hypertension or dysautonomia could potentially play a role.

2. Current Actions: You already have a robust plan in motion. It’s commendable that you are pursuing evaluations that may help clarify your condition.

3. Further Steps:

   • Continue open communication with your healthcare team: Keep discussing your symptoms, especially new developments, as it may help your doctors adjust their approaches. Consider maintaining a symptom diary that records your experiences, triggers, and how symptoms fluctuate throughout the day.
   • Follow through with proposed evaluations: This includes the endocrine evaluation related to your empty sella and any imaging of your cervical spine. It's crucial to rule out or confirm the presence of any underlying conditions that could contribute to your symptoms.
   • Focus on supportive strategies for symptom relief: While waiting for further evaluations, consider implementing supportive care approaches:
     • Stay hydrated and maintain a balanced diet, as this can positively affect your overall health and potentially alleviate some symptoms.
     • Engage in gentle physical activity, as tolerated, which may help manage symptoms associated with dysautonomia and improve blood flow.
     • Practice stress-reduction techniques, such as mindfulness meditation or gentle yoga, which may help reduce the perception of symptoms and improve your overall well-being.
   • Monitor mental health: Chronic health issues can take a significant toll on mental health. Keep in mind the importance of emotional support, whether through friends, family, or mental health professionals. They can provide coping strategies to handle the situation better.

4. Urgent Symptoms to Monitor: If you experience any new or worsening symptoms, such as sudden changes in vision, severe headaches, or difficulties speaking or focusing, it's important to seek immediate medical attention.

If you need guidance on specific exercises, relaxation techniques, or diet recommendations, or if there are particular symptoms you're struggling with, feel free to reach out with those questions. Your persistence is commendable, and I wish you the best in navigating this challenging situation. Please take care!