OpenHealth Q&A

Seemingly Seizure-Like Episodes That Aren't Actually Seizures

**Note: This message is a bit lengthy, so please bear with me as I share my experience.** I'm a 19-year-old female who was diagnosed with POTS about six months ago. In the early days of my condition, I found myself calling an emergency service due to an overwhelming sense of anxiety and a racing heart (at the time, I wasn’t aware of my diagnosis). They advised me to head to the emergency room, leading me to call for an Uber. Yet, just five minutes into the ride, I felt an intense and alarming shift within my body that I struggle to describe; it might have been some kind of adrenaline surge. I became increasingly overheated and was engulfed by an overwhelming feeling of doom, suspecting I might be experiencing a stroke. My muscles began to tense and jerk uncontrollably. Though I attempted to communicate my distress to the driver, all that came out was a stuttered plea for help. This episode persisted for about three minutes, leaving me panicked and disoriented afterward. Upon my arrival at the hospital, the medical staff expressed uncertainty about my condition, ultimately concluding it wasn’t a seizure since I remained conscious during the episode. I experienced approximately six more episodes, each characterized by the same sensations: a racing heart, discomfort in my body, and that dread of impending doom, until I was prescribed propranolol after suffering from SVT attributed to POTS. For a month after starting the medication, I didn't face any episodes and believed they were mere reactions to my elevated heart rate. However, a couple of weeks ago, I encountered another episode, although it felt distinctly different this time. It was late at night when I started to feel an unsettling weakness that I struggle to articulate. I sensed a desperate need for something without understanding what that might be, so I tried consuming food and fluids, resting, and distracting myself, yet the feelings escalated until my left arm and jaw became numb. Anxious, I sought my grandmother's advice (since I live with her); she suggested I lie down and monitor the situation, considering a hospital visit if things didn’t improve. Almost immediately after lying down, my muscles tightened and began to twitch. That night, it recurred multiple times, but intriguingly, I felt a sense of relief as these episodes unfolded. I wasn’t panicked or bewildered, and I felt some control over my facial muscles—unlike before, when I felt entirely incapacitated. I’ve had two more occurrences since, and the precursors to these episodes have been shorter and milder. I might feel off for a brief period, shake, and then return to normal. Also, I've gained the ability to momentarily suppress the jerking. While I'm no longer overly worried about these occurrences, I am deeply intrigued by what could be causing them. **Additional Relevant Information:** - I've undergone an MRI which revealed no issues in my brain. - My blood pressure remains normal. - Comprehensive blood tests, including checks for vitamin deficiencies, diabetes, blood sugar levels, and clotting disorders, all returned normal results. - Serious cardiac conditions have been ruled out through ECGs and blood tests. - I maintain a healthy weight. - My heart rate no longer exceeds 100 at rest or 120 when upright. - These episodes can occur whether I am active or at rest, but they are predominantly seen at night post-10 PM. If anyone requires additional information, please feel free to reach out. Thank you in advance for any insights you may have!

Answers (1)

7/21/2025, 1:02:03 AM

OpenHealth AI

It sounds like you're experiencing complex and distressing episodes that can feel seizure-like but aren't classified as seizures. These symptoms can be particularly concerning, especially when they involve sensations of anxiety, racing heart, and muscle twitching. Given your diagnosis of POTS (Postural Orthostatic Tachycardia Syndrome), it’s possible that these episodes are related to this condition, as POTS can lead to various symptoms including intense anxiety, dysautonomia (dysfunction of the autonomic nervous system), and even muscle spasms.

Explanation:

1. Nature of the Episodes: The experiences you described, including muscle tightness and twitching, along with feelings of doom, may align with what's known in some cases as dysautonomia symptoms. These can occur due to fluctuations in your autonomic nervous system, which regulates involuntary functions in the body like heart rate and blood pressure.

2. POTS and Anxiety: It's common for individuals with POTS to have episodes that provoke anxiety and autonomic responses, which might include shaking or perception of weakness. The relief you felt in later episodes might indicate a gradual acclimatization to these sensations or a shift in how your body is managing them.

3. Continued Monitoring: Since you’ve ruled out major neurological issues with an MRI and other tests, the focus may be on managing POTS symptoms and their effects on your body. This could involve lifestyle modifications, medication adjustments, and strategies to cope with episodes when they occur.

Next Steps:

1. Monitor Your Symptoms: Keep a journal of these episodes, noting their duration, intensity, what you were doing before they started, and any relief measures you tried. This will help identify potential triggers and patterns over time.

2. Hydration and Nutrition: Ensure you're adequately hydrated, as dehydration can exacerbate POTS symptoms. Eating small, frequent, balanced meals can help stabilize blood sugar levels and reduce dizziness or fatigue.

3. Engage in Gentle Exercise: Gradual, low-impact exercises promote blood circulation and can improve overall autonomic function. Activities like stretching, yoga, and recumbent exercises (like cycling or swimming) may be beneficial.

4. Stress Management Techniques: Practice relaxation techniques such as deep breathing exercises, progressive muscle relaxation, or guided imagery. Mindfulness or meditation may also help reduce anxiety and improve your overall sense of control during episodes.

5. Evaluate Medication: Discuss with your healthcare provider the possibility of adjusting your propranolol or considering additional treatments that might further stabilize your heart rate and reduce the severity of these episodes.

6. Follow-Up Care: Regularly follow up with your healthcare team to reassess your symptoms and treatment plan. They can provide tailored support, adjusting therapy as needed to ensure you’re managing these episodes effectively.

If you have acute episodes that feel concerning or if symptoms worsen, it's essential to reach out for immediate medical attention. Your ongoing observation and proactive management are key to navigating your experiences. Please let me know if there's anything specific you'd like more information on!