OpenHealth Q&A

19F, I Had a Seizure After Doctors Overlooked My Symptoms

I apologize for the length, but I'm feeling very anxious and need to share my experience. Approximately a year ago, I had no significant medical issues when I went to the emergency room due to intense vomiting, diarrhea, and severe pain in my right lower abdomen after a hike. I underwent a series of blood tests and two contrast-enhanced CT scans, both of which ruled out appendicitis. After this initial assessment, I was moved to the gynecology ward for monitoring due to the presence of small ovarian cysts. However, the pain remained excruciating, rendering me unable to walk without the help of 200-400 mg of tramadol daily. After spending three weeks there, I received a nerve block which provided minimal relief, but soon after, I began experiencing episodes of fainting linked to the pain. After being discharged, I lost consciousness in public and was readmitted, leading to another nerve block procedure. The doctors suspected anterior cutaneous nerve entrapment syndrome. For the following two months, I relied on a cane for mobility and was prescribed a combination of NSAIDs, tramadol, and pregabalin to manage the continued pain. This situation required two more trips to the ER due to fainting episodes. In September, following ongoing pain, I underwent radiofrequency ablation (RFA), which alleviated my discomfort for three months, but by December, the pain had returned. During this period, I also struggled with severe depression and persistent fatigue. The pain escalated over the following months, compelling me to use the cane again, and resulting in muscle twitches, involuntary shaking, and elevated heart rates at unexpected times. After another fainting spell complicated by severe shaking, I sought emergency care, but they attributed it to anxiety. At the end of March, I collapsed again, suffering from a headache and profound tiredness, which triggered another intense pain episode, leading to a hospital stay of four days. The day after, something felt amiss; I experienced an odd euphoric sensation in my chest. Recognizing that my condition was deteriorating, I lay down, teetering between consciousness. Suddenly, twitching began in my leg and escalated to my arms and head, culminating in uncontrollable jerking movements. Following this episode, I felt completely drained, like a marionette, and slept deeply for around 14 hours. I am scheduled for another nerve block and an MRI in three days. My pain remains so intense that I still rely on opiates. Currently, the primary diagnosis points to anterior cutaneous nerve entrapment syndrome. However, after being shuffled through various hospitals for over a year without any definitive solution, my condition is worsening. Since the RFA, I’ve been battling debilitating fatigue, and every myoclonus attack feels increasingly severe, leading me to fear that what I experienced yesterday was indeed a seizure. I'm terrified that the medical professionals will disregard my concerns once again and simply keep me on tramadol for a few days before sending me home. What should I do? How can I convey to them in medical terminology that I’ve effectively been incapacitated for more than a year? Regarding my medical history, previous tests including an abdominal CT, brain CT, bloodwork, EKG, and chest X-ray all returned normal results. I am currently on tramadol, Pristiq, Vyvanse, pregabalin, and sporadic NSAIDs. I enjoy social drinking and recently quit smoking a month ago.

Answers (1)

3/29/2025, 11:30:49 AM

OpenHealth AI

I understand that you're experiencing a very difficult situation with persistent pain, sudden fainting episodes, and the fear of seizures. It's completely reasonable to feel anxious about your health, especially after such a long and complex medical journey. Let's break down your concerns and identify some actionable steps you can take to advocate for yourself effectively.

Main Points:

1. Persistent Pain & Neurological Symptoms: Your history of intense pain, the possibility of seizures, and the impact of your symptoms on daily life is significant.
2. Urgency to Communicate Symptoms: It’s crucial to express the severity and duration of your symptoms to your healthcare team within an appropriate medical context.
3. Upcoming Appointments: You have an important MRI and nerve block scheduled soon, which could be critical in diagnosing your situation more clearly.

Explanation:

Given your reported symptoms, including potential seizure activity, it is essential to have continuous and open communication with your healthcare providers. It’s not uncommon for patients with complex histories like yours to feel overlooked, especially when symptoms fluctuate or evolve. The terminology used can help convey the severity of your condition and your needs.

Next Steps:

1. Prepare for Your Appointments:

   • Symptom Diary: Keep a detailed log of your symptoms, including the frequency and nature of fainting spells and myoclonus episodes. Note how these affect your daily activities, using descriptors like “incapacitating” or “debilitating.”
   • Timing of Symptoms: Record when these episodes occur and any potential triggers. This information could help in understanding the pattern and better diagnosing your condition.

2. Communicate Effectively:

   • During your upcoming appointments, use clear medical terminology. For example, explain that you experience "intermittent myoclonus" and "episodic loss of consciousness," and describe the impact these have on your quality of life. You might also mention your concern about anterior cutaneous nerve entrapment regarding your pain management.

3. Ask Direct Questions:

   • When meeting with your medical team, ask specific questions regarding the management of your pain and the potential for any underlying neurological issues that haven’t been addressed. Inquiring directly about how they plan to investigate your symptoms could prompt a more thorough evaluation.

4. Advocate for Yourself:

   • If you feel dismissed or if your concerns aren’t adequately acknowledged, don’t hesitate to seek a second opinion. You deserve thorough evaluations and treatment options that consider your complex situation.

5. Take Care of Your Mental Health:

   • Given the toll this ordeal has taken on your mental well-being, consider incorporating stress-relief techniques such as mindfulness, gentle exercise, or consultation with a mental health professional to help cope with anxiety as you navigate your health journey.

Closing Thoughts:

Being proactive and organized in expressing your symptoms and experiences can empower you to receive the attention and care you need. Your health and well-being are paramount, and it’s important that you feel heard and supported. Please let me know if you have any further questions or need additional resources.