Monday, November 1, 2021

Epilepsy Blog Relay November 2021




November is Epilepsy Awareness Month!

This means it is time for the November Epilepsy Blog Relay!  You can follow along at https://livingwellwithepilepsy.com/.

I am the lead blogger for the month. You can also read my full story at https://livingwellwithepilepsy.com/2021/epilepsy-blog-relay/nov-21-ebr-posts/5-tips-to-live-well-with-epilepsy.html.

Here is a snippet:

What does it mean to Live Well with Epilepsy? In an ideal world, there would be no epilepsy to worry about. But as it is, epilepsy is a fact of life. It is our challenge to live with it as best we can. Over the years, I have discovered a few tips that help me live well with epilepsy.

As a person with epilepsy, I wish I could be seizure-free. That is, I suppose, anyone’s hope in my position. Right now, I am seeing a seizure reduction, but I don’t want to jinx myself by saying I’m on my way!

The truth is, I still have short seizures almost daily, and just the other day, I had a big, complex partial seizure at work which incapacitated me. I could not respond to my coworkers. Understanding people and not being able to reply was extremely frustrating. When I finally recovered, I was ready to get back to work but knew better. I had to go home and rest. My mother picked me up and drove me home.  My big mistake was that I walked to work. I thought it would be good to get some exercise, and the temperature was in the low 80s. However, the heat was enough to trigger a serious seizure.

So, how do I try to live well with epilepsy? Here are 5 tips you can try to live well with epilepsy.

Long Time No See

 Hi everyone!

It's been a long time, I know. I hope you have all been well, or as well as can be.

A lot has happened this year. I had my RNS (Responsive Neurostimulator) implanted last year.  Since that time, my hopes for seizure reduction fluctuated. At first, the count decreased, but then it went up again, much higher than before. Now, it is coming back down. I am still not satisfied. There some factors that cause my seizures: temperature changes, especially from warm to cold and extreme heat from the sun or intense exercise; stress; and laughter, especially when something hits my funny bone. I am working with my doctor to adjust my medications and RNS settings.

Meanwhile, I keep hope alive...