Tuesday, May 29, 2012

One Brain Fart at a Time

Copperpaws just started a new blog on living with his particular brand of epilepsy.  You can check it out at:  OneBrainFart.blogspot.com

Friday, May 11, 2012

Living Well With Epilepsy

I checked out some of my followers websites today and found this really great one by Jessica Smith:
Living Well With Epilepsy  It has a ton of information and is very pro-awareness.  Do visit!

Friday, April 27, 2012

Been a while...

Good news, no seizures in a long time.  I have been really careful about getting enough sleep and taking my meds on time and consistently.  I changed up the background on the site, the green plants were really hurting my eyes!  I hope everyone visiting gets some use out of my extensive archives describing my adventures with seizures.  Feel free to send me questions.

Sunday, March 13, 2011

Living Well With Epilepsy

Here is a shout out to Living Well With Epilepsy, a new blog by Jessica Kennan Smith. The blog has some great insights into the funding disparities between other conditions and epilepsy. Although just as many people die each year from epilepsy as from some other diseases, epilepsy receives a fraction of the funding of most other common conditions.

Friday, January 14, 2011


Although I haven't posted recently, it is because I haven't had any seizures in over a year! I am so grateful for that!

I did have a recent contact from a new website called Fit2beParents. This website focuses on new parents who suffer from epilepsy. It provides information on how to get through the pregnancy and how to make it through the difficulties of raising a baby while at the same time making sure you are successfully dealing with the difficulties of taking care of oneself or one's spouse. It is very unique in that it gives advice for mothers and fathers. The site is run by two people that have epilepsy and are giving their first-hand advice. I highly recomend it: Fit2beParents.co.uk

Monday, November 30, 2009

Blurred Vision

I started taking a higher dose of Vimpat 300 mg twice a day this weekend. I did not seem to have any problems on Sunday, but this morning I have had a few instances where I was dizzy or had blurred vision. I am not sure if it is from the medicine, but those are some of the reported side effects. I will keep monitoring to see what happens. My Depakote is down to 250 mg twice a day. We shall see what happens.

Monday, November 09, 2009

Vimpat 200 Mg

Today is my first day taking 200 Mg of Vimpat twice a day. I am being especially wary of any of the possible know side effects, such as blurred vision or dizzyness. It has been two hours since my first dose. No sign of issues yet.

Friday, November 06, 2009

Petite Mal Seizure

I started getting hot while eating lunch today and had a short petite mal seizure. I quickly activated my VNS, drank some cold soda, and took off my coat. I am feeling better now. I had not taken my lunch meds yet, so I took those too.

Friday, October 23, 2009

5 Days on Vimpat

I've been on the Vimpat for 5 days now. So far no side-effects or allergic reactions. Granted, this is at the lowest dosage of 50mg 2 times a day. Still, a good sign...

Wednesday, October 21, 2009

Vimpat - Day One

I have decided, after speaking with my Dr., to try a new medication for epilepsy called Vimpat. I began taking a very low dose on Monday. Hopefully I will be able to use it in place of the Depakote that I take now. We shall see.

Wednesday, February 18, 2009

Another Living With Epilepsy

I found another epilepsy blog today that cronicles a young child's experience with epilepsy. A pretty good read.

Monday, November 10, 2008

CURE for Epilepsy

OK, I haven't been here for a while, but really needed to point out the following. If you've been over to Federal Review to read my rants and Emeriol's reasoned discourse, then you know I'm a strong conservative and consistent supporter of Republicans. But I took extra joy in Sarah Palin's potential focus on "special needs" children as Vice President - because, after all, children with epilepsy not only have special needs in education and other matters, they have needs that vary so widely, some serious education or awareness-raisin' is needed. In any case, among my other disappointments on November 4, I was sad that Mrs. Palin would not have the opportunity to bring this issue to the debate in Washington.

But guess what. A reason for hope that the Obama Administration may even have some reason for focus directly on epilepsy itself. My lovely wife pointed out this video to me because she noticed the banner behind Mr. Obama and he roasted his new Chief of Staff Rahm Emmanuel.

For several years now, I have had this logo and link at the bottom of my page on Federal Review.

Guess who founded and runs this organization? Susan Axelrod, the wife of Barack Obama's campaign manager, David Axelrod. There's some good news. And while my 8-year old has had only one seizure since June 2007, the EEG is still not settled and others, such as Federal Review's own Emeriol, continue to fight seizures. I'm pleased that someone concerned about epilepsy research will have the new President's ear. And that's some wealth redistribution I can get behind.

This graphic from the CURE site shows how the Epilepsy Lobby (if there is one) has been very ineffective. You know you have a PR problem when a much larger number of afflicted are seeing much less comparative research investment. Perhaps that's about to change.

Crossposted on FederalReview.

Thursday, October 30, 2008

Brain mapping...

Yesterday I did some brain mapping at the Institute. It went well, but I was pretty tired by the end. Next week I have another appointment scheduled with Dr. Dean. Hopefullly she will write me back to work part time. I am getting a bit stir-crazy. :)

Tuesday, October 28, 2008

No seizures today! :)

I had another good day with no seizures. :)

Saturday, October 25, 2008

Saturday, October 11, 2008

Another Intense Gran-Mal Seizure

Scott had another intense gran-mal seizure this morning at approx. 12:45 am. Fortunately he did not fall out of bed or injure himself. This seizure lasted a bit longer than his usual tonic clonic seizures - it lasted a full 5 minutes. During the seizure, Scott let out an excruciating howl as if he were in intense pain. I swiped his VNS magnet several times both during and after the seizure. Nevertheless, Scott did stop breathing after taking several deep, jagged breaths. Swiping the magnet also did not seem to help with the recovery time as it was almost an hour before Scott could speak clearly or answer even the most simple questions. Scott has been resting peacefully since the seizure. I will have to wake him shortly to take his medications and eat breakfast. Please pray that Scott will have a peaceful, seizure-free day.

Friday, October 10, 2008

Current Depakote Level

Nurse Cindy called from Dr. Dean's office a few minutes ago. She stated that Scott's Depakote level is currently 63.7. (You may recall that it needs to be between 80 and 100 to be completely effective.) Cindy also stated that they expect this level to continue to increase - especially since Scott's dosage was just increased (on 10/8/08) and that it takes 60 hours for it to increase in his system. We pray that as the level increases, Scott's seizures will subside.

Results from Thyroid Test

I just heard back from Dr. Sollenberger's office. Scott's blood test showed that his thyroid levels are a little low so they are going to start him on medication today. Scott has a follow-up appointment with Dr. Sollenberger in early December.

Scott had one simple partial seizure at approx. 11:30 this morning. He was sitting at the kitchen table eating a sandwich and drinking some juice. He is in bed and is resting now. I'll continue to keep you posted.


Thursday, October 09, 2008

Twice in One Day

Scott had another gran-mal seizure at approx. 7:55 pm this evening. He was on the phone with his brother at the time. (Sorry Matt!) Just like the seizure from earlier today, this seizure did not last long - only two minutes - and it did not take Scott long to recover. Fortunately, I was able to swipe his VNS magnet so he never stopped breathing. Unfortunately, Scott hit his already sore and bruised elbow during the seizure.

Again, we're not sure what caused the seizure. (Scott ate dinner and took his medicine at 6:00 pm this evening. He also took a nap once we returned home from his doctor appointment this afternoon.)

Scott is in bed resting comfortably now. I pray that this is the last seizure he has to endure for a very long time.

Another Gran Mal Seizure

Scott had another gran-mal seizure this morning at approx. 10:30. He was at his father's house at the time and was playing Civilization on his Nintendo DS. This seizure only lasted a minute or so and did not take Scott long to recover. (Thank goodness!)

I called Dr. Dean and scheduled an appointment to have Scott's blood levels checked this afternoon. I specifically want to see how much Depakote is in his system. (Dr. Dean had previously explained that you have to maintain a level of 80 - 100 for the drug to be compleetly effective.) Perhaps this will help to shed some light on this recent flurry of seizure activity.