OpenHealth Q&A

Distinguishing Between FND Shutdowns, NES, and Autonomic Mini Storms

The title sums it up well, but I’d like to delve deeper into the topic. I’m seeking clarification on how to differentiate among functional neurological disorder (FND) shutdowns, non-epileptic seizures (NES), and autonomic mini storms. Additionally, I am curious about the methods my neurologist might use to assess my condition. I am a 28-year-old woman, standing at 5 feet 3 inches tall and weighing between 100 and 105 pounds, with slight fluctuations in weight that matter to me. I am a smoker and formerly consumed alcohol, although I no longer do so. I have children and battle multiple health issues, including dysautonomia, fibromyalgia, psoriasis, and severe endometriosis. On the mental health front, I have been diagnosed with ADHD, complex PTSD, and potentially bipolar disorder, though I personally believe that my struggles with brain fog and ADHD significantly impede my mood and daily life. Currently, I am on the lowest possible doses of fludrocortisone and propranolol. Approximately two and a half weeks ago, I began experiencing recurring "episodes," and they have been incredibly distressing. During these times, I tremble, sweat excessively, and my heart rate and blood pressure deviate from what is normal for me. I often find myself unable to move or speak. While I usually retain consciousness, I unfortunately lost it during a particularly severe episode the other day. I have an upcoming appointment with my neurologist in a few days, but my anxiety is pushing me to want to understand what I might expect and how to communicate my experiences effectively. I managed to record a milder episode, but I haven’t been able to capture the more intense ones yet; I consider myself fortunate to have documented that one. Given my dysautonomia, I can’t help but wonder if it plays a role in my episodes or exacerbates them. For further insight, I’ll share that during a significant episode, my mother had to call emergency services. When they arrived, they conducted an EKG, which indicated I might have had an anterior heart attack. Immediately following the episode, my heart rate soared above 160 beats per minute, but by the time I reached the hospital, I was back to what is normal for me (albeit I have ongoing irregularities, including some tachycardia and occasionally bradycardia). I haven’t pinpointed specific triggers for these episodes, although heat seems to be a factor among others. During an episode, I often shake intensely, feeling cold despite profuse sweating. My eyes may oscillate between being open and closed, and I frequently experience sensations akin to choking. Despite being able to see and hear when my eyes are open, my perception feels distorted, as if I were submerged in water. My mouth dries out, and I struggle to articulate words. Just before the onset, a wave-like sensation washes over me, accompanied by nausea. I typically rest with my legs elevated, but this rarely alleviates my symptoms. The experience is draining and painful, causing me to unwittingly curl into a fetal position or kick out in distress, with emotional aftermaths often leaving me in tears. Based on all this, do my symptoms align with any of the conditions mentioned? What are the probable steps my neurologist will take during my upcoming visit? I’m feeling apprehensive and apologize for the somewhat scattered nature of my narrative; my brain fog has been quite pronounced lately. Thank you so much in advance for your help! Extra appreciation to those who made it through my lengthy description! P.S. I have some additional diagnoses that I need to discuss as well.

Answers (1)

6/25/2025, 6:20:50 AM

OpenHealth AI

Thank you for sharing your experiences so clearly, and I appreciate how challenging this has been for you. Let's break down your concerns regarding the potential distinctions between functional neurological disorder (FND) shutdowns, non-epileptic seizures (NES), and autonomic mini-storms, as well as what to expect from your upcoming appointment with your neurologist.

Key Points:

1. Distinguishing Symptoms:
   • FND Shutdowns: Often characterized by neurological symptoms (like movement disorders or speech difficulties) that don’t have a clear medical explanation. These can be triggered by stress or psychological factors.
   • Non-Epileptic Seizures (NES): Similar to seizures but are not caused by abnormal electrical activity in the brain. NES may involve shaking, loss of awareness, and can be associated with extreme emotional distress.
   • Autonomic Mini Storms: These likely relate to dysautonomia, where your autonomic nervous system experiences a dysregulated response, leading to symptoms like profound sweating, heart rate changes, and altered blood pressure.

Understanding Your Symptoms:

From your description, it seems like your symptoms could overlap with these conditions, particularly given your history of dysautonomia and the distressing nature of the episodes. The trembling, dysregulation of heart rate and blood pressure, sweating, and feelings of choking could suggest either NES or autonomic dysregulation, possibly exacerbated by FND.

Next Steps for Your Neurologist Appointment:

1. Symptom Documentation: Since you recorded a milder episode, try to provide this to your neurologist. If possible, prepare a summary of your episodes, noting their duration, triggers, and any accompanying symptoms.

2. Medical History Review: Your neurologist will likely take a comprehensive look at your medical history, including your previous diagnoses and current medications (like fludrocortisone and propranolol).

3. Neurological Exam: Expect a thorough neurological exam to assess your reflexes, coordination, and sensory responses.

4. Diagnostic Tests: Your neurologist may recommend tests to rule out seizure disorders (like EEGs) or other investigations to evaluate your autonomic function.

5. Discussion on Triggers: Be ready to talk about observed triggers, like heat, and how they seem to relate to your episodes, as this will help in formulating a management plan.

Actionable Guidance:

• Maintain a Symptom Diary: Note when episodes occur, potential triggers, and their duration. This information will aid your neurologist.
• Stress Management Techniques: Given your anxiety and the nature of your episodes, practices like deep breathing, mindfulness, or gentle yoga may help.
• Lifestyle Adjustments: Stay hydrated and regulate your body temperature (avoid overheating) to help manage dysautonomia symptoms.

Your feelings of anxiety are completely understandable, especially with the complexity of your symptoms. Remember that seeking help and clarification is a strong step toward understanding and managing your health better. You're not alone in this, and your neurologist is there to support you. Please feel free to reach out for more specific concerns or if you have questions about particular aspects of your health management.