Navigating the complexities of functional seizures has been a journey filled with ups and downs, humour, and resilience. As someone who experiences these seizures firsthand, I'm often asked a myriad of questions about what it's like to live with this condition. From sensing the seizures approaching to managing them and explaining them to others, each inquiry offers a glimpse into the intricacies of my daily life. Join me as I address ten common questions, sharing personal anecdotes, insights, and practical advice gained through my own experiences. Together, let's explore the realities of functional seizures and the unexpected glimmers that sparkle along the way.
Biggest Question: What are Functional Seizures Like?
"If I were to sum it up, I'd say: It's draining. There's this curious part of me that finds it intriguing, maybe because I've always been drawn to the complexities of psychology. Observing how functional seizures evolve in their appearance, duration, and frequency over time has been quite a journey. Initially, my seizures lasted a daunting two hours, but now they're condensed to a mere 1-3 minutes and only a few times a week. They've also varied in presentation, alternating between convulsions and collapse. Convulsions entail intense full-body contractions and shakes, while collapse feels like a gradual loss of muscle control, leading to a floppy sensation. I've affectionately nicknamed them the "wiggles" and the "ragdoll/power down."
10 Common Questions I've Been Asked
1. Do you feel your functional seizures coming on?
"Yes, I often sense them approaching. It gives me enough time to position myself safely and alert anyone nearby to pause our conversation. Usually, I notice a contraction in my hand or a slight loss of focus in my vision, like I'm looking past what's in front of me. After that, it's uncertain how long they'll last."
2. Are you aware when it's happening?
"Absolutely! I remain fully conscious throughout. I can hear everything around me and can usually respond with a grunt if asked a question. There are times when I'm dazed or disoriented, especially if I've had multiple."
3. What strategies do you find helpful during a functional seizure?
"At this stage, I haven't found anything that stops them, though continuing conversations is helpful. The seizures tend to resolve on their own, and I enjoy listening while I wait. If I do require assistance, it's usually to reposition my head and support my neck to maintain a straight position. Everyone's needs differ, so it's essential to ask before taking action. If there's a concern about my ability to respond, it helps if the person informs me of their intentions beforehand (ie. I'm next to you and I'm going to adjust your pillow)."
4. Do you have any triggers for your seizures?
"It's challenging to pinpoint exact triggers, but there are a few factors that have shown a consistent pattern of either immediately or eventually increasing my seizure activity. These include heightened excitement or stress, alcohol consumption, exposure to strobing lights, inadequate sleep, and excessive fatigue."
5. How do you explain your condition to others?
"I often use humour or relatable language to describe my seizures. I've likened them to 'looking like a held-in sneeze,' resembling a 'dead bug' or a 'carpet tango,' or even humorously comparing them to fainting goats or a circuit glitch. It helps me make the situation more approachable and relatable, but everyone's language preferences will differ."
6. Does it cause you pain?
"The seizures themselves do not. Occasionally, the positions my hands contract into can be uncomfortable, or my neck may ache from being in an awkward position. However, overall, the seizures themselves are not painful."
7. How have the seizures impacted your life?
"The seizures have undoubtedly had a significant impact on my life. Out of all the symptoms associated with functional neurological disorder, the seizures are by far the most challenging to deal with. While I can adapt to other symptoms, such as using a cane for walking or relying on speech support apps, there's little I can do to manage the seizures aside from ensuring my safety during their occurrence. Hopefully, one day that will change!"
8. Can you elaborate on the specific limitations you've faced due to the seizures?
"The seizures have imposed certain restrictions on my life, affecting activities such as swimming and driving. These limitations can be frustrating at times, as they hinder my ability to engage in activities that I once enjoyed or found necessary for daily life. Additionally, on rare occasions when I experience a higher frequency of seizures, it disrupts my plans for the day, and I'm often forced to rest and prioritize my health over other commitments."
9. Is there anything that stands out from your experience?
"Actually, yes! One remarkable aspect of my experience with seizures is the way animals have responded to them. It's quite fascinating. In the presence of my seizures, my friends' cats tend to hover nearby until the episode subsides. On the other hand, dogs have shown a variety of responses, ranging from guarding me until the seizure ends to showering me with affectionate kisses. Their instinctual reactions offer a unique and heartwarming perspective on the situation."
10. What advice would you give to others who may be experiencing functional seizures?
"I would encourage them to seek out community and support. It's essential to remember that people don't necessarily need to share the same experience to be able to show up and offer support. When I first started experiencing seizures, I found myself isolating because I was afraid of frightening others, and I struggled to explain what was happening. However, over time, I realized the importance of opening up and allowing my friends and family to be there for, and with, me. Now it's become second nature and my loved ones have adapted alongside me."
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