OpenHealth Q&A

Seeking Answers: A Personal Medical Journey

I'm at the end of my rope and utterly drained. Before I explode during my Neurology appointment on Monday, I feel compelled to share my journey in hopes of finding some comfort or understanding from others. It all began when I was only 12 years old, and now at 25, I still recall that day vividly. I was preparing for a birthday celebration for one of the most admired girls in school. Excitement and nerves swirled within me. My mother was doing my hair in the bathroom while a friend rambled on beside me. Suddenly, my hearing became muffled, and an intense ringing filled my ears. I recall desperately telling my mom, "I can't hear you." Just as those words left my lips, the world faded to black. My mother, once a paramedic, later recounted how she witnessed my eyes roll back as I collapsed. In a rush, she tossed the straightening iron aside and gently lowered me to the floor. After 2 or 3 agonizing minutes, I regained consciousness, albeit with a throbbing headache that resulted from her urgent calls for me to wake up. Despite our visit to the hospital, doctors found no immediate issues. Thus, my journey began, and over the years, I've experienced numerous episodes that share a connection with that initial incident, albeit in different forms. Currently, during my usual episodes, my muscles become incredibly tense; I lose the ability to move or speak, yet I remain aware of my surroundings. These moments can last between 2 and 5 minutes. I might manage minor twitches but nothing beyond that. Tremors shake my hands, and at times, my eye will twitch sporadically. When the episode ends, my body relaxes all at once, but I often remain mute for a few minutes following. As I try to speak too soon, I struggle with a pronounced stutter, leaving me feeling like I’ve just emerged from temporary paralysis. Fortunately, I can sense these episodes approaching, allowing me to brace myself for what’s to come. In my quest for answers, I’ve consulted multiple medical professionals. The initial doctors suggested hypoglycemia, primarily due to my childhood obesity, despite my lack of any real issues with blood sugar or diabetes. Next, they explored the possibility of epilepsy, connecting me to various machines for testing, but none indicated seizure activity. Subsequently, they labeled my episodes as anxiety-related and attributed them to absent seizures stemming from this anxiety. I accepted this diagnosis for years until it became too hard to believe it was accurate. I sought help from my current neurologist, who, after hearing about my experiences, dismissed the previous diagnosis. He proposed that these symptoms were not seizures and referenced POTS as a potential avenue for exploration. Although he did order an MRI for precaution, I also visited a cardiologist who, despite rejecting POTS testing, conducted an echocardiogram and a 3-day Holter monitor examination. Upon his return with “good news” indicating that my heart was perfectly healthy, he expressed confusion as to why I needed further appointments. I couldn’t contain my tears of disappointment; I had hoped for a different outcome, one that gave me something to work with. Now, as I prepare for my upcoming neurologist appointment, I'm already aware of the MRI results, which revealed nothing out of the ordinary. Unfortunately, this is the reality I face during my pregnancy, compounded by two recent "seizure" episodes that prompted an urgent assessment in Labor and Delivery, only to confirm that all was normal. This unending cycle is wearing me down. Without my husband—my steadfast supporter—and my two children, I often wonder if I would even want to continue living this way. The frustration of being a medical enigma is overwhelming, especially since it seems no one genuinely seeks to unravel this mystery. I've noticed a pattern with my episodes; they tend to arise when my body struggles to maintain balance. Triggers include heat, overeating, lack of sleep, excessive caffeine, and heightened anxiety, especially surrounding significant life events like the passing of a family member or witnessing a friend’s serious motorcycle accident. Even unexpected surprises, like a practical joke involving an air horn, can set them off. I find myself desperately seeking a roadmap, a shared experience, or some glimmer of hope to reassure me that I don’t have to merely endure this situation any longer.

Answers (1)

3/29/2025, 4:10:46 PM

OpenHealth AI

I'm really sorry to hear about your challenging journey and the overwhelming feelings you're experiencing right now. It's clear that your episodes have significantly impacted your life, and it's understandable to feel drained and frustrated after so much uncertainty and lack of answers. You're not alone in this; many people face confusing medical issues that seem enigmatic, and seeking clarity can be incredibly exhausting.

Main Points:

1. Understand Your Symptoms: Your experienced symptoms, such as muscle tension, temporary inability to speak, and awareness during episodes, are important clues.
2. Focus on Triggers: Identifying and managing your triggers could help reduce the frequency of episodes.
3. Prepare for Your Appointment: Keep track of your symptoms and experiences to share with your neurologist for a more focused discussion.

Explanation:

The symptoms you describe resemble some types of movement or functional disorders, which can complicate traditional diagnostic pathways. Episodes that involve muscle rigidity but retain consciousness can sometimes align with conditions known as psychogenic non-epileptic seizures (PNES) or functional neurological disorders. They manifest under stress or emotional disturbances but are not classified as seizures in the traditional sense.

It's important to recognize that while diagnoses can be frustrating, they can also evolve. Your neurologist's suggestion to explore POTS (Postural Orthostatic Tachycardia Syndrome) may relate to your cardiovascular system’s response to changes in posture, which might impact your symptoms as well, particularly if you experience dizziness or fatigue.

Next Steps:

1. Document Your Episodes: Keep a detailed diary of your episodes, noting when they happen, duration, triggers (like heat or anxiety), and any accompanying symptoms (like fatigue or dizziness). This information can be invaluable for your healthcare providers.

2. Explore Stress Management Techniques: Given that anxiety appears to be a trigger, consider learning relaxation techniques such as deep breathing, mindfulness, or yoga to help manage stress when you sense an episode approaching.

3. Discuss Functional Neurological Disorder (FND): At your upcoming appointment, bring up the concept of FND and share your experiences and observations. Your healthcare provider may have insights on how to manage such symptoms.

4. Review All Possible Diagnosis Together: Make a list of all diagnoses you've been given and discuss them with your neurologist. This might include asking about POTS, FND, and functional seizure disorders and what tests or lifestyle changes might help.

5. Lean on Support: Engage with your husband and consider joining support groups or online communities with individuals who have similar experiences; this could help alleviate feelings of isolation.

It's crucial to keep advocating for your health and to continue seeking a team that wishes to understand and help you. You've already shown remarkable perseverance in navigating this journey, and I encourage you to continue seeking the validation and care you deserve. Please remember, you are not alone in this.