If you know someone with epilepsy, do them a favor and give them the link to this newsletter & tell them to subscribe to it.
As a child growing up with epilepsy, the disgnostic procedures were so archaic by comparison to what is available now.
With the advent of digital EEG’s that only take minutes and are held by gel instead of airplane glue and needles…like when I was diagnosed at 9!
The more you know about the lastest, breaking technologies, diets, and other self care tips, the greater your chance of beating the odds and winning ending up with health and a medicine plan that controls the seizures without controlling your life with side effects.
The worst part of antiepileptic medicines and anticonvulsants are the pages of side effects.
Learn as much as you can through your doctor and get a print out from your local Walgreens showing what things to be on the lookout for in possible side effects.
If you have children don’t let their fevers get too high and bring them down with ice compresses or cold wash cloths and baby asprin as soon as possible. I speak from experience.
Me in the middle front row at 12 years old, with mom on the right, sister on the left, dad (in heaven now) on top right and two brothers on top left and top middle. I was home schooled because I was too sick to attend school for several years. When Tegretol came out and I went on it, I was one they were testing it on. It worked on me though for the first time a pill actually worked.
When Vimpat from UCB came out it made history by having the higest % of success rate and lowest side effects ever. It is made for partial epilepsy, like mine. If you know of someone who is intractable (uncontrolled seizures in spite of taking pills), ask your doctor if Vimpat could be the answer. It was for me now.
Many years before when not even two years old, my fever accelerated to over 102 and I went into convulsions then a coma. I stayed that way in the hospital for many days in St. Josephs Children Hospital in Tucson, Arizona until Dr. Storks found me and helped save my life. I have a Pebbles doll that smiles at me to this day and I think of Dr. Storks who saved my life when I see her smiling back at me.
I would have taken a photo of her and put here but most all my personal possessions have been in storage since April of 2013 when my sister & brother in law evicted me from my mother (Ramona with Alzaheimer’s disease) home I lived in for 13 years…helping make meals for mom and paying their house payment.
Quite a tragic story but the good news is I didn’t do the bad things in my life and instead all the things I have been responsible for have turned out amazingly well.
It wasn’t until I was four years old that I began having simple partial seizures. Later it was finally diagnosed when a neurologist realized the tummy aches I complained about really had a neurological root. A kid doesn’t have the vocabulary to describe what a seizure feels like.
Talk with your child. My second grade teacher Mrs. Zubroad noticed I was having a seizure in my class and that lead to a hospitilization at Palm Harbor Hospital that would lead to the disgnosis of complex partial epilepsy in Jan 1971.
I am taking Tegretol and Vimpat now and do pretty well.
People with epilepsy can do just about everything anyone else can. I personally wouldn’t advocate driving unless the person has had many years seizure free. I mean 100% seizure free.
I was nearly killed driving about 16 years ago now, and I am so happy I wasn’t and relieved nobody else was hurt. I will never drive as long as I live, even if they upped the anty to a million bucks. I nearly lost everything I worked for, including my future for the price of a little independence. I do the bus and walk a long way every day and have become quite accustomed to the long time it takes, but it gets me there….eventually.
Also a tip for women having uncontrolled seizures especially around your period. The odds of you having catamenial epilepsy are about 98%. I had it from 9 years old until I had my tubes tied in 2001 and my cervix removed, making it impossible to have periods any longer. Every time a woman has her period her progesterone levels drop. Progesterone has anti seizure properties. So when the woman quits having periods there are no longer any more hormonal swings, like I suffered for years with.
I guess this is going to be another book I am writing:
Epilepsy: What It Is, What It Isn’t & How to Prevent IT and Manage Epilepsy To Optimize Life Quality
As the CEO & Founder of The Epilepsy Connection for many years I saved lives in 5 minutes by caring, researching and tuning others into the needed resources in their areas. Sometimes, just talking to a caring soul and knowing they weren’t alone was the most important thing of all. After my divorce to my rocket scientist ex, I had my arms full of just taking care of myself, but I will always be a disability advocate as long as I live.
I hope my words have helped a few parents out there and I hope that some with epilepsy who have been taking risky chances with their life by driving when not being seizure free can hear me say “It isn’t bad. You will live if you don’t drive. You will live LONGER.”
I wish all that read this health and all things wonderful in life and hope…always hope.
Photo Taken by Nick Belman
Digital Photography done by Paulette L. Motzko
Written by Paulette Le Pore Motzko
November 3, 2013