I think my family and friends have a big fear of me not waking up.
Frankly, so do I.
Reading medical records like “we gave her 6 doses of Ativan, they showed up on an EEG but she didn’t wake up.” — having to be intubated due to status epilepticus MULTIPLE times is so wild.
It’s easy to be mad at my body.
I was genetically prone to suffer and regardless I’m very grateful right now.
I should not be alive from many different events — and not just pertaining to epilepsy but I’m alive.
My body fought hard enough for me to be here. That’s something.
This Valentines Day was 7 years from the car accident that changed my life. I didn’t feel like acknowledging it this year.
As I write, we are on a drive to Colorado, in which my hope to make this better, sits in the hands of a doctor who I was connected with.
To be fair, it has been better. We tried a new method of giving my medication and my seizures have slowed significantly. I take 2g of Ativan at night due to having nocturnal seizures. When I do have seizures though, they are quite hard to stop. That’s a problem. It’s time to find a resolution.. I hope
Navigating life with epilepsy, especially when compounded by severe events like status epilepticus, is a raw and profound experience. From my own journey and what I have gathered from others in the epilepsy community, the unpredictability of seizures often brings a constant underlying fear—not only for the person affected but also for their loved ones. It’s a shared emotion to worry about the possibility of not waking up after a seizure despite medical interventions like multiple Ativan doses as rescue medication. Genetics can heavily influence this journey. For instance, genetic markers such as SCN1A and COL3A1, like those mentioned in medical records related to epilepsy cases, are known to affect seizure threshold and neurological function. Such genetic insights help neurologists tailor treatment plans better, though it can feel overwhelming to learn about those predispositions. One evolving area that has shown promise is the method of administering seizure medications. For people with nocturnal seizures, as in the story shared, a shift in how drugs like Ativan are given—both timing and dosage—can reduce seizure frequency and severity. However, as often experienced, stopping seizures once they start remains a major challenge. Family support and awareness groups such as #EpilepsyAwareness and #SeizureSupport can provide a vital lifeline. They offer emotional reinforcement and practical advice, which is crucial when confronting the isolation and fear that epilepsy can generate. Traveling for specialized care, like the drive to Colorado mentioned, underscores the importance of connecting with expert neurologists and epilepsy centers that can provide advanced interventions and hopefully improve quality of life over time. Living with epilepsy is not just about survival; it is about resilience, adapting to new medical strategies, and holding on to hope. Sharing real, personal experiences contributes richly to community understanding and acceptance, ultimately empowering others in similar struggles to seek and find the support they need.
Bless you stay strong girl ❤️✌️🙏