Coping with PNES: Seeking Solutions Amidst Daily Struggles
At 30 years old, I am grappling with a range of health issues including congenital heart defects, factor V Leiden, and a history of bilateral pulmonary embolisms and deep vein thrombosis. On top of that, I face challenges such as psychogenic non-epileptic seizures (PNES), diastolic heart failure, major depressive disorder, generalized anxiety disorder, insomnia, complex PTSD, and borderline personality disorder. My current medication regimen includes 90 mg of Cymbalta, 5 mg of Abilify, 100 mg of Seroquel, 0.5 mg of Klonopin twice daily, 50 mg of Vistaril, and 100 mg of Gabapentin twice daily. Since my diagnosis of PNES on June 1st, my quality of life has deteriorated significantly. I experience between three to six seizures each day, often accompanied by loss of consciousness. Despite consistently following my medication schedule, my psychiatrist has recently adjusted my Cymbalta dosage and introduced Klonopin into my treatment plan. Additionally, I began cognitive behavioral therapy (CBT) last Sunday to address my mental health concerns. However, I find myself in a state of confusion and desperation. My ability to work has been severely impacted, and I struggle to manage daily tasks due to the physical and emotional toll of these episodes. Although neurologists have assessed me and confirmed that there are no further neurological issues, I feel trapped in my current situation. I’m committed to my medication and therapy, yet I still endure significant suffering. What steps can I take in the interim to regain my sense of control and well-being?
Answers (1)
6/16/2025, 10:50:40 PM
OpenHealth AI
Navigating life with complex health issues, including psychogenic non-epileptic seizures (PNES), can feel overwhelming, but there are steps you can take to regain a sense of control and increase your overall well-being. Your commitment to therapy and medication is commendable, and it's essential to build from that foundation.
Key Points:
- Coherent Coping Strategies: Focus on practical coping strategies to manage daily challenges.
- Daily Routines: Establish a consistent daily routine to provide structure.
- Community Support: Seek support from trusted individuals or support groups.
Explanation:
PNES can greatly affect your mental and physical health, especially when compounded by other conditions like heart defects and mental health disorders. It's understandable to feel trapped, especially if you're experiencing multiple seizures daily. A multi-faceted approach—combining self-help strategies with professional guidance—can help you navigate this difficult period.
Steps to Consider:
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Establish a Routine:
- Create a daily schedule that includes time for self-care, therapy exercises, and enjoyable activities, which may help reduce anxiety and improve stability. Small, manageable tasks can restore some sense of accomplishment and control.
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Mindfulness and Relaxation:
- Incorporate mindfulness or relaxation techniques into your routine. Practices such as deep breathing, meditation, or yoga can help reduce anxiety and may lower the frequency of PNES episodes. Set aside a few minutes daily for these activities.
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Keep a Journal:
- Track your seizures, medication side effects, mood changes, and daily activities in a journal. Over time, this can help you identify triggers or patterns which you can discuss with your healthcare team.
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Build a Support Network:
- Connect with friends, family, or support groups both online and locally. Sharing your experiences can provide emotional support and reassurance. Consider looking for groups focused on PNES or similar mental health topics.
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Stay Engaged in Therapy:
- Since you've started cognitive behavioral therapy (CBT), stay committed to that process. Discuss specific coping strategies with your therapist that can help you handle anxiety, manage your PNES, and improve overall quality of life.
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Communicate with Your Healthcare Team:
- Keep an open dialogue with your psychiatrist and other healthcare providers about how you're feeling and the impact of your medication regime. If you’re experiencing concerning side effects, they may adjust doses or explore other options.
Final Thoughts:
While recovery may take time and require patience, implementing these steps can assist in regaining some sense of stability and control. Acknowledge the small victories as they come, and remember you're not alone in this journey. Your resilience in caring for yourself despite these challenges is truly admirable. Please feel free to reach out for ongoing support or guidance as needed.
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