OpenHealth Q&A

Questioning My Epilepsy Diagnosis: Autonomic Symptoms or Misdiagnosis?

Hello everyone, I’m a 27-year-old female who received an epilepsy diagnosis in 2023 following a couple of severe episodes within a six-week timeframe. However, after experiencing five total episodes and observing some recent symptoms, I’m beginning to reconsider that initial diagnosis, and I would greatly value your input. --- **My medical background includes:** - A perinatal stroke, which was identified when I exhibited hemiparesis at three months old - Factor V Leiden, a disorder affecting blood clotting - No allergies - No asthma, though I had an ER visit last month for a reaction that mimicked asthma, which was diagnosed as an allergic response of unknown origin --- **Description of my episodes (five incidents over roughly two years):** - The episodes begin with a sharp pain located on the upper left side of my back, near my spine. - The discomfort radiates across my upper torso, affecting areas such as: - Beneath both arms - Underneath my right breast - Sometimes extending to my right clavicle - Following the pain, I experience: - Chills and cold sweats - Lightheadedness - Nausea - Reduced hearing capacity - Warmth and mild numbness in my left arm - A sensation of impending loss of consciousness --- **During these episodes:** - I lost consciousness in three of the five instances - Two episodes involved convulsions - On one occasion, my lips exhibited a purple discoloration - I consistently vomit quite violently (once or twice per episode) - Remarkably, after vomiting, I recover quickly without experiencing significant confusion or a postictal state - I sweat profusely, to the point of dripping - Paramedics have noted normal vital signs, such as blood pressure around 117/xx - My heart rate fluctuates dramatically, ranging from 54 to 164 bpm on the same day - The initial pain fades immediately after the episode but reemerges hours later as a lingering soreness, reminiscent of post-exertion discomfort --- **Results from diagnostic tests:** - EEG showed minor slowing in the left temporal lobe, but no signs of epileptiform activity were present - No seizures were documented during the EEG testing --- **Reasons for my doubts about the epilepsy diagnosis:** - The onset of symptoms is consistently triggered by pain - The symptoms always develop gradually - Vomiting appears to alleviate the episode - I don’t experience confusion or fatigue afterwards - The episodes are characterized by many signs of autonomic dysfunction (sweating, nausea, fluctuations in heart rate) --- **My inquiry is:** Could this epilepsy label be incorrect? Am I potentially facing: - Vasovagal syncope? - Dysautonomia? - Neurocardiogenic syncope? - Or even mast cell activation syndrome? Has anyone else gone through similar experiences or received a revised diagnosis? I would be grateful for any reflections, experiences, or stories you might want to share. Thank you! 💛

Answers (1)

6/22/2025, 3:20:48 AM

OpenHealth AI

It's completely understandable to feel uncertain about your epilepsy diagnosis given your symptoms and concerns. Your detailed account highlights important factors that may suggest other conditions, such as autonomic dysfunction. Here’s an overview of what you’ve presented and steps you can take.

Summary

Your episodes involve specific symptoms starting with pain, followed by autonomic signs like sweating and fluctuations in heart rate, with an EEG showing no clear epileptic activity. This raises questions about whether your diagnosis of epilepsy is accurate, and you may be experiencing conditions like vasovagal syncope or dysautonomia.

Explanation

1. Elevated Concerns: Your experiences, such as episodes initiated by pain and the presence of autonomic symptoms (like sweating and heart rate variability), suggest that there could be other explanations beyond epilepsy.
2. Symptoms of Autonomic Dysfunction: The symptoms you describe are indicative of possible autonomic nervous system issues. Conditions such as vasovagal syncope (where blood flow to the brain is reduced, often triggered by stress or pain) or dysautonomia (broad term for disorders of autonomic functioning) could align more closely with what you are experiencing.
3. Validity of Epilepsy Diagnosis: The lack of epileptiform activity on your EEG raises doubts about the initial diagnosis of epilepsy, especially since your post-episode recovery does not align with typical postictal states seen in seizures.

Next Steps

1. Symptom Journal: Keep a daily log of your symptoms, noting the circumstances of each episode, accompanying symptoms, duration, and anything that alleviates them (e.g., vomiting). This will be helpful for further medical consultations.
2. Seek a Specialist: Consider consulting a neurologist specializing in autonomic disorders. They can evaluate your symptoms within the context of autonomic dysfunction and perform specific tests if needed.
3. Explore Diagnostic Testing: Discuss the possibility of tests such as tilt-table testing or other evaluations to assess autonomic function. This could clarify conditions like neurocardiogenic syncope or dysautonomia.
4. Basic Lifestyle Adjustments: Stay hydrated and consider increasing your salt intake (if not contraindicated by other health conditions) as this may help with blood volume and circulation. Avoid known triggers such as specific physical stressors or situations that induce your symptoms.
5. Education and Support: Research the conditions you suspect, and consider joining support groups for people experiencing similar symptoms; it can be helpful to share experiences and gain insights.

It's essential to approach this with a mindset of exploring options rather than feeling confined by a previous diagnosis. Your health journey is unique, and being proactive about your concerns can lead to a better understanding and management of your symptoms. Please feel free to reach out for more information or further assistance on specific conditions.