Telling my Story…

The story of my Epilepsy diagnosis isn’t exactly a pretty one, but really…who doesn’t have a tumultuous journey with this so-called condition?

I was contacted a couple of weeks ago by a writer for As I always say…any and all times we have the opportunity to talk about Epilepsy, it’s a good thing!

My thanks to Amy Capetta at aolhealth, and Cyberonics for approaching me. The more we push to erase the stigma, the more we accomplish for Epilepsy in general.

I know I’ll do everything I can to make sure this happens! story on living with Epilepsy

{ 13 comments… read them below or add one }

Lilian Nolda July 31, 2010 at 12:20 am

My brother and I were just debating this particular very topic, he is usually trying to prove me incorrect. Your own view on this is perfect and exactly how I truly feel. I just now e-mailed my brother this page to show him your own perspective. Immediately after looking over your web log I book-marked and will be coming back to read your messages!

Heather July 31, 2010 at 9:03 pm

YOu have a beautiful family. Thanks for sharing your story. You are very courageous. Good luck and take care!

Naomi B July 31, 2010 at 10:11 pm

I just read your story on AOL Health. Kudos to you for doing so well and doing your best to spread awareness. I hope things continue to go well for you and yours.

Katrina July 31, 2010 at 10:14 pm

My husband started taking Keppra 2 wks ago and is experiencing depression. He does not epilepsy he had a unruptured brain aneursym clipping and had seizures in recovery so he was put on Keppra 3000MG along with other medications and seemed ok at first. But has slowly become more depressed. I have been instructed to call Sheppard-Pratt on Monday for an evaluation does anybody know what I can do in the meantime, I have no experience with seizures, and thankfully he hasn’t had any expect in recovery in the hospital.

Pattie Rainey July 31, 2010 at 11:12 pm

In the article it states that you have to sleep on two pillows, have you tried a 12 inch wedge pillow to see if that works better?

Sarah August 1, 2010 at 1:34 am

Hello. I read your story and I hope things get better for you. I was wondering, did you have any seizures during pregnancy? If so, how did they affect you?

Connie Howells August 1, 2010 at 6:23 am

Hello, I just read you story. I suffer from seizures, but do not have epilepsy. I am glad to see you are doing well. It is also good to see that someone who suffers from epilepsy has a child. It is something that has worried me for when the time comes. I havent had a seizure in 5 years but am always worried when it will happen again. It took about a yr or so for me to get put on medicine when I was 16. The doctors told me parents that I was doing it for “attention” and that I had not ever had a seizure. Finally after I had one at work and cracked my head open they put me on tegretol, which I have been taking ever since. I guess I just wanted to comment you and thank you for everything you are doing. Though I dont have epilepsy I understand the stigma that goes a long with it. I am not as open about it, though I dont try to hid it, but I find when I tell people it takes awhile for them to be comfortable around me. Thanks again for all your doing! :) Take care!

Alysse August 1, 2010 at 7:48 am

Connie…thank you so much for your thoughts and kind words!
Alysse M.

Alysse August 1, 2010 at 7:56 am

Thanks for reaching out!
Yes, I did have seizures during pregnancy, but not as many. During my pregnancy, I was the ‘healthiest’ I’ve been since my diagnosis. I have to say, they affected me in about the same way as when I wasn’t pregnant.
If you are concerned, I would make sure you are with a very good epileptologist (at that time, we traveled 2.5 hours to Johns Hopkins to see the group I was seeing. AND, make sure you are with a ‘high risk’ OB group. When I first spoke to them when I found out I was pregnant, I made sure I was with an OB who actually had experience with seizures/epilepsy. I took a pretty large dose of folic acid each day, and I was on Topamax (only one anti-seizure med) during my pregnancy. Topamax isn’t the drug for everyone, but it worked for me.
My daughter is healthy and almost 5 years old, so we were extremely lucky. Let me know if you’d like some names…I’m happy to pass them along!
All the very best!!
Alysse M.

Alysse August 1, 2010 at 7:59 am

THANK YOU for the suggestion! I am going to hunt for one this week. I honestly hadn’t thought of a wedge pillow.
All the best,
Alysse M.

Alysse August 1, 2010 at 8:10 am

Thank you for writing…
I take it you see a neurologist? Have you informed the doctor about your husband’s situation? Perhaps a medication change is in order? I would definitely speak to someone quickly.
They obviously put him on anti-seizure meds because of the seizures he suffered in the hospital, but maybe a different med is in order?
Also–many people who take anti-seizure meds also take meds for depression. I’m NOT a doctor, but I would definitely get some input from the neurologist.
Kind regards,
Alysse M.

Alysse August 1, 2010 at 8:10 am

Thank you for your kind words!!
Alysse M.

Alysse August 1, 2010 at 8:13 am

Thank you Heather!
Alysse M.

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