Monday, December 18, 2006

Epilepsy v. XBox

Over the years I have heard many stories of how caretakers can tell if their loved one is having or is about to have a seizure. Jack's story is the first of which I have heard where a lack of playing a video game has been cited. Now, through the combined power of Jacks experience, your post, and Google searches, you may make it possible for hundreds of children living with epilepsy to convince their parents to let them play more XBox games. Any time there is a pause in the sound of Covenant aliens (Halo) being destroyed, their moms should check on them!

It is really amazing that he is able to play. When I was younger, my refexes were so slowed from the Tegretol I was taking, that I was completely unable to play action games. It was not that I couldn't move the controls, but my reflexes were too slow. Like Jack, I now take Lamictal, and my reflexes are not impaired... in fact, so drastic is the difference that I often wonder if the medicine improves my dexterity.

This just hit me... If Jack can do well with one hand on an XBox control, I bet he could do wonders with the Wii controller - you only need one hand to use it!

Friday, December 15, 2006

From The Adventures of Jack

So, imagine you are three years old. You started walking at 10 months, you have a great vocabulary for your age and you are just a little clumsy, just like Daddy. In other words, you're a rather normal little boy, going to pre-school, learning to be self-aware and independent. Then, one night when you are 3 1/2, you wake and your arm is asleep. So, you get out of bed and go tell mommy and daddy who are still watching TV. But your arm isn't just tingly, it can't move. It's paralyzed. "That's OK," mommy and daddy say, "it's just really asleep. Let's go back to bed." A month later, no one really notices when you seem a little sleepier, or a little clumsier in the mornings. After all, you are only 3 1/2. Then, one morning, something happens and then you notice that mommy and daddy are asking if you are OK. They've just watched your right arm start shaking, while your eyes were open but blank. It lasted only about 30 seconds, and you don't remember a thing, but mommy and daddy look concerned and schedule a doctor's appointment. The doctor makes you jump up and down, move your arms in funny ways, do some high fives, touch your nose. He says you are probably OK, but if it happens again, mommy and daddy should call.

It happens again. Almost three years later, you are now in Kindergarten, and it's still happening.

Jack is my son, and he has a seizure disorder. Most people know it as Epilepsy. The doctors think it is a particularly kind of Epilepsy characterized by continuous or persistent abnormal electrical activity during "slow wave" sleep. ESES - Electrical Status Epilepticus Sleep. It's the same as, or slightly different than (Doctors disagree), CSWS - Continuous Spike Waves During Slow Wave Sleep. Jack may also have Landau Kleffner Syndrome. ESES/CSWS is a component of LKS. LKS is typically characterized by a loss of the ability to express or understand spoken language - or both. Some people with LKS, ESES, CSWS don't have visible seizures. Jack has had them all. And it is clear that his ability to express himself verbally has been effective, though not severely. The Doctor hopes that Jack's left-handedness is evidence that maybe his speech is controlled on his right brain.

Since May 2004, Jack has had each of the following kinds of seizures - appearing approximately in this order.

Complex Partial Seizures (with Todd's Paralysis)
Absence Seizures
Simple Partial Seizures
Simple Partial with secondary generalization
Cluster absence seizures
Head droop seizures
Atonic Seizures (Drop Attacks)
Complex Partial again
Simple Partial again
Absence again
Droop again
Tonic-Clonic (First ever full body seizure was this morning)

Since May 2004, Jack has been on the following medications. Usually, when the meds are changed, we see 4-8 weeks without seizures, then they return and we increase or change the medication and get another reprieve (except one mediciation that made things worse). Anyway, here goes.


(4 uses of diastat (valium) - 2 in last week).

So, there are the basics. How is a Kindergartener supposed to learn to write when his right hand is weak and almost useless and he left is unsteady and shaky?

Want to know how a 6 year old with no fine motor skills in his right hand (can't even hold a small object) plays XBox. He uses just his left hand, controlling one joystick with his palm and tapping the buttons at the same time.

Want to know how to tell if seizures are returning before you actually start seeing them? He loses interest in playing XBox.

Right now the Doctors don't know what to do. We have increased the Lamictal again and hope to see results so we can all have a fun and seizure-free Christmas. Otherwise, we'll return to the Epilepsy Unit at Wake Forest to be left, once again, with no clear idea of what to do.

Finally, I grew up knowing nothing about epilepsy, other than jokes about "get the spoon!" (bad idea, by the way). It's amazing that so many people are living with this, yet apparently, Epilepsy just doesn't have the high profile of much less common afflictions - mostly because Epilepsy takes so many forms and is often not debilitating. But sometimes, it is.

Now, imagine you are 6 years old. You're having breakfast when both arms start seizing and your whole body goes rigid. Mommy lays you down on the hardwood floor because, well, the kitchen has hard wood floors and a rigid 6 year old is hard to carry to the carpet or couch. Now imagine the big seizure ends but you start having a lot of little ones and mommy takes you to the couch. She calls daddy and puts him on speaker phone while mommy goes upstairs to get the diastat to give you a rectal dose of valium. And you know that's what's coming. Your shoulder starts twitching, eyes are dilating. And undilating. And dilating again. The seizures aren't stopping. And daddy asks you "Jack, how are you feeling?" You struggle to get the word from your brain to your mouth. Then you answer, as you always do, "Great!" Because you don't remember when seizures weren't a part of your life. And you are "Great!"

Monday, December 11, 2006

Guest Blogger!

I have invited a guest blogger, Winston, to share his first-hand experiences with a type of epilepsy called Electrical Status Epilepticus Sleep (ESES) and the Landau-Kleffner Syndrome. Winston is an avid blogger and will be doing a series of posts and updates about his son’s struggle with the condition.

Thursday, December 07, 2006

Wake Forest University Baptist Medical Center To Test New Epilepsy Treatment

This is a new research study on experimental epilepsy treatement being conducted from the Wake Forest Baptist Medical Center (in my home town!) It appears that you can still enroll in the study. There is contact information at the bottom.

Wake Forest University Baptist Medical Center To Test New Epilepsy Treatment

WINSTON-SALEM – Epilepsy specialists at Wake Forest University Baptist Medical Center are testing an investigational device designed to control seizures in patients with epilepsy. The device is a responsive neurostimulator (RNS™ System) which is implanted in the brain, detects abnormal electrical activity in the brain and sends out electrical impulses to prevent seizures. Wake Forest Baptist is the only center in North Carolina, Tennessee and South Carolina to test the device made by NeuroPace.

“This technology offers new hope to patients who have not responded to other treatments currently available and continue to have seizures,” said William Bell, M.D., an epileptologist and principal investigator for the study at the medical center.

Unlike the vagal nerve stimulator, another implantable device to treat seizures, the RNS treats the exact area of the brain affected by seizures. These are often areas of the brain that cannot be safely removed by epilepsy surgery. Patients are unaware of the electrical impulses used to control their seizures.

To enroll in the study, patients must be between the ages of 18 and 70 and have had an average of three seizures per month for the last three months, despite being treated with medication for partial epilepsy.

Over 240 people will be enrolled in the study at 28 medical centers nationwide for a two- to three-year period. Patients will be asked to keep a diary of their seizure activity and use a laptop and data transmitter to send information from their device to neurologists at Wake Forest Baptist to analyze.

The device is surgically implanted in a patient’s head by Steven Glazier, M.D. a neurosurgeon at the medical center, and can be turned on and off by the patient’s neurologist. For the first four months, 50 percent of patients will have the device turned on and 50 percent will have their device off. Researchers will track each participant’s progress during this phase. For the last 18 months of the study, all patients will have their device turned on and will record their health status on a routine basis. Patients will continue to receive their current epilepsy treatment while participating in the study.

“In order to determine if the device is effective, we have to turn off the devices in one group to compare with the group with the devices that are turned on,” Bell said. “After a four-month window, then we will turn all the devices on and see what the benefit to the patient is.”

“We hope this will be a new option for patients with epilepsy who continue to have seizures,” Bell said.

Other colleagues participating in the study include: Neurologists Cormac O’Donovan, M.D., Maria Sam, M.D., and Mary Campagna-Gibson, M.D. Jo Shuping is the research coordinator for the study.

For more information about the study, call Jo Shuping at 336-716-8694.

Monday, December 04, 2006


I have this blog set up on Feedblitz so you can get your posts via email. The link is the orange one on the sidebar... or, you can click here.

Sunday, December 03, 2006

Off Topic: A Knock on the Duir

I rarely post anything like this little gem. But the artwork was pretty cool and the poetry inspiring. Check out: A Knock on the Duir
I found it in a post at the VNS Message Board.

Saturday, December 02, 2006

Sharing Our Days

Sharing Our Days is a blog dedicated to helping people with ongoing health conditions, including epilepsy. There is a small community and a collection of blogs for many different contitions. Check it out.

Wednesday, November 29, 2006

Verge of spiritual epilepsy

I always check out what people search for in order to get to this website. Recently someone got here by searching baptists epilepsy. Along with this site, a number of others were in the search including the letter to the editor of The Baptist Message. I have read over the message post several times, but am completely confused as to what the writer is trying to convey, much less how this relates to epilepsy....

Verge of spiritual epilepsy
August 25, 2005
Southern Baptists are on the verge of spiritual epilepsy! The reason is the decrease in baptisms.
When two people love each other, the normal result is children. Let us give up the fightin’ and learn to love each other. Then, the world will say, “Behold, how they love one another” rather than “Behold, how they fight.”
If we exalt Jesus and his love, he will draw the people.
Roy Remont
Hot Springs, Ark.

Monday, November 27, 2006

Jeanne A. Carpenter Epilepsy Legal Defense Fund

The Jeanne A. Carpenter Epilepsy Legal Defense Fund was created to assist people living with epilepsy with legal matters related to the condition.

They have a page where you can submit questions and review a FAQ about legal questions related to epilepsy. In addition, it appears that you can submit requests to have them help you find an attorney with experince with epilepsy matters.

Thursday, November 23, 2006

U.S. National Election v. Epilepsy

I got this info in an email update from the Epilepsy Foundation:

The Epilepsy Foundation is particularly pleased that Rep. Steny Hoyer (D-MD) has won election to be the House Majority Leader. Rep. Hoyer and his late wife Judy Hoyer (who once served on the Foundation's Board of Directors) have been steadfast champions for epilepsy and other disabilities. The Foundation will be counting on the Majority Leader to carry forward the agenda for restored funding the Centers for Disease Control and Prevention Epilepsy Program, restoration for the American with Disabilities Act and a commitment to research to find a cure for epilepsy.

The Foundation is also pleased that Ed Perlmutter (D-CO) will be serving in the House of Representatives. Representative Perlmutter has a daughter with epilepsy and has been an active member of the Epilepsy Foundation of Colorado.

Many other supporters of epilepsy from both the Democrat and Republican parties will remain in key positions like Senators Specter (R-PA) and Harkin (D-IA) and Representatives Ferguson (R-NJ), Lewis (R-CA), Wicker (R-MS) and Abercrombie (D-HI).

Wednesday, November 22, 2006

Cyberonics CEO & CFO Resign

The CEO and CFO of Cyberonics resigned. Cyberonics is the maker of the Vagus Nerve Stimulator. The resignations come in the midst of investigations into stock option back-dating. It is unclear how these investigations will affect the company... but stock prices are up. Check out the article.

Tuesday, November 21, 2006

Welcome United Kingdom!

I've gotten a ton of hits from the United Kingdom over the last few days, so I thought that I would show my gratitude and fly the Union Jack for a day!

The National Epilepsy Society is the largest epielpsy based chairty based in the UK. They have an epilepsy FAQ page that has a lot of information on a wide varity of epilepsy subjects. Has podcasts too!

Monday, November 20, 2006

No more seizures

I have not had any more tonic-clonic seizures since the last one I had at work. Since then, I printed out about 200 seizure first-aid cards and the director had them passed out to all of our staff. Hopefully if I have another one, my co-workers will be better prepared to take care of me. That, and another 200 people will have received detailed information about taking care of people who have sizures. I'm sure they will run into more than just me...

Thursday, November 09, 2006

The Connection of Mankind

I found this interesting poem on the Epilepsy Ontario website. Hope you enjoy.

The Connection of Mankind

By Daniel North

I remember chasing the aura
Being weakened at the limbs
In the fading world that surrounds
Memory is now living on empty whims.

Convulsing violently as the mind suffocates
Into the hand of a neurological reverie
Constantly running around in a field
It seems a lifetime since my mind was clear.

I can not remember half of my life
Where did I get this scar?
Must people run in fear
Just because of a cruel stigma?

I'm so petrified to look at the light
There's panic erupting in my chest
I need to overcome this disorder
As I juncture towards rest.

I've had so many EEG's and scans
What is real or what is a side effect?
We just need to forget the dark ages
And learn for mankind to connect.

Daniel North has more of his poetry online at his website: New Dawn Poetry

Wednesday, November 08, 2006

Increase seizure activity

In the last couple weeks since I had a tonic-clonic seizure, I have noticed that the number of aura-seizure events have increased some, although nowhere near as high as they were before my VNS. Possibly I have not been getting less seep than I should. Probably from taking my meds too late in the day. I'm going to definitly try to rest a lot this weekend.

I 'm going to do a week or so of the more "popular" posts on epilepsy over the next week. There are certain searches that people do that take them to a number of key posts. Re-posting will just make it a bit easier for them to find the info.

Tuesday, November 07, 2006


Although most polls in the East Coast of the US have closed, there are probably some still open in the West Coast. If you have not voted yet, please consider voting for a canidate that supports federal funding for epilepsy research.

Friday, November 03, 2006

As if I didn't have enough to do...

Ok... so I started another blog... on antique furniture. I know, not exactly exciting stuff. But I find it interesting. This blog is exclusivly on the furniture of George Hunzinger. So, unless you have some great desire to learn about American furniture manufacturers of the Victorian era, you may just want to skip it. If you do like pictures of cool antiques, click away!

Thursday, November 02, 2006

Dispelling Myths About Epilepsy

Yesterday I was asked a few questions about my epilepsy. One lady was concerned that the screen-saver on her computer may have caused me to have a seizure. Another lady thought that a piece of candy she gave me may have caused the seizure. Both fortunately were false. Although flashing lights within a certain Hz can cause some people to have seizures, the moving screen-saver she had would not meet the criteria. As for candy, I have not found any information on candy ever causing seizures.

Wednesday, November 01, 2006


Ok. At my wife's insistance, I set up my blog to run Feedblitz so she can get her posts via email. Anyone else may also to subscribe. :) Currently I have the sign-up thingy down on the far right sidebar. Please let me know if it does not work!

Tuesday, October 31, 2006

A little embarrassed...

I was walking around the 3rd floor of my office doing inventory of computers when I saw one of the cubes had the name plate of a person that is normally on the 2nd floor. She was not there, so I asked one of her neighbors when she moved to 3? The lady said, "She has been up here for over 2 weeks. Don't you remember, you and Chet moved her equipment up here?" ... no I did not remember... that was the day of my seizure at work. Moving the lady was the last thing I did before I had my seizure. I was a bit embarrassed at the situation, but played it off like it was no big deal. It was kind of scary though... my memory used to be very very bad as opposed to just sub-standard. I hope to never get to that state again...

Off Topic - Stupid Blogger

Blogger is killing me today. I can't seem to upload any pictures! It keeps failing before the picture is loaded. Arrrggg!

Friday, October 27, 2006

Talking about Epilepsy

I've had to answer a lot of questions about epilepsy over the last week. Sometimes I feel comfortable talking about it... sometimes not so much. I'm not sure why. Obviously I'm willing to write about it in detail for over a year now... I think it has to do with having to admit weakness. It may sound silly, but it isn't always easy to acknowledge that you have a condition that renders you completely helpless at times. And maybe it is a bit embarrassing to have your co-workers find you in that situation... I deal with it and try to be a good role-model and spokesperson for people with epilepsy... It's just not always easy.

Tuesday, October 24, 2006

No more late nights...

Well, Dr. Dean said that it was important that I get more rest in order to avoid having more seizures. This simple solution is a bit harder to implement than might seem at first glance. First, I have been accustom over the last year or so to getting about 6-7 hours a sleep per night during the week. Now I am going to try for 8. This leaves me cutting out about 10 hours of stuff per week....My plan is to go to bed at 10 and get up at 6....

So what do I have to cut. Well, it means no more Daily Show at 11 P.M. and no more Colbert Report at 11:30 P.M. No more Countdown With Keith Oberman at 12:00 A.M. No more Missing at 10:00 P.M. and I got to hit the sack right after CSI goes off. Finally, I'll be missing the last hour of WWE: Monday Night Raw.

Solutions... well, I'm definitely going to have to make some adjustments so I can get in the important shows... So, I'm going to try to watch the Daily Show rerun and 1st run Countdown at 8:00 P.M. although I may miss a bit of each, I should definitely be able to catch any of Olbermann's excellent Special Comments, such as this one on Fearmongering or this one on Death of Habeus Corpus. Of course, if I can't watch the show, I can always catch the Special Comments clips on Crooks and Liars.

The most important thing is that I get more sleep. I really don't want any more seizures. This last one beat me up pretty bad. Glasses got smashed up along with my face. Ended up in the hospital for about 3.5 hours getting X-Rays... Not fun at all...

Monday, October 23, 2006

Seizure Recovery

It's been a couple of days since Scott's seizure. Scott had an EEG performed last Friday and we met with Dr. Dean that same day. Dr. Dean stated that Scott's tendency for having a seizure increases when he is tired or sleepy. She stated that Scott needs to get more and better quality sleep. So we stayed in all weekend and Scott rested. He returned to work today but has turned in early as he is still a bit tired. Hopefully, his new sleep schedule will reduce the chance of him having more tonic clonic seizures.

Thanks to everyone for your continued thoughts, prayers and support.

Thursday, October 19, 2006

Tonic Clonic at the Office

Scott suffered a tonic clonic seizure at the office this evening. He was beat up pretty badly when he fell. We just returned home from the ER. He is a bit sore and sprained his neck during the seizure but did not suffer a concussion. The ER physician instructed Scott not to work tomorrow and instead to follow-up with Dr. Dean at the Epilepsy Institute. I will post more tomorrow to let everyone know how Scott is doing.


Thursday, October 12, 2006

Dr. Apt.

Had my regular VNS apt with my Dr. Actually, I just saw Nurse Cindy who does the VNS interrogation. Everything checked out fine. I stayed with my same settings as the device seems to be working quite well! (thx Cyberonics!)

My current settings: .75 mAmps, 250 pulse width, 20 hz, 1.8 frequency/off time.

Sunday, October 08, 2006

Long Time no Blog

To my loyal readers... sorry. Been busy with a multitude of other fun stuff... uh ... like work & stuff. Good news though! No seizures!

Wednesday, September 20, 2006

Tuesday, September 19, 2006

The SONIC Project

The The SONIC Project website has a nice animated diagram of how the brain works. Although it says Epilepsy on it, it really is just a primer on neurons and brain function. Very interesting, but a bit difficult to use.

Thursday, September 14, 2006

Patron Saints of Epilepsy

If there are any Catholics out there looking to find the correct Patron Saint to which to pray about epilepsy in the hopes that they will interceed on your behalf with God, there are many from which you may choose. I got this list from the Catholic-Fourm: Alban of Mainz, Anthony the Abbott, Apollinaris, Balthasar, Bibiana, Catald, Christopher, Cornelius, Dymphna, Genesius, Gerard of Lunel, Giles, Guy of Anderlecht, John Chrysostom, John the Baptist, Valentine, Vitus, Willibrord.

The Catholics have eight-teen Patron Saints for epilepsy... pretty impressive. If you have epilepsy and are not religious, but are considering joining a church, you may want to take a good look at Catholocism. Consider this: Catholics have 18 patron saints of epilepsy. Whereas, if you combine all the patron saints of epilepsy for Lutherans, Baptists, Presberterians, and Methodists, you come up with a big fat Zero. Just something to think about...

Ok. Out of the big selection of saints, possibly the most famous of the bunch (at least to a protestant like myself) is Saint Valentine. Not sure if you want to take up a bunch of his time though. He has enough to do considering that he is the patron saint of Love and Greeting Card Manufactuers.

So if you are looking for a cool dude to which to pray, try out this guy: Saint Christopher, who also happens to be the patron saint of travelers. Interestingly enough, in the Orthodox Church, Saint Christopher is frequently depicted with a dog's head... Anyway, he should have plenty of spare time for people with epilepsy as his other patronages include stuff like: lorry drivers, fruit stand operators, and toothaches...

Wednesday, September 13, 2006

Feeling kinda blue..

Another MRI of my head. This is a slice down the center. You can see where the large blood vessels are at the top and the smaller ones go into the center. Supposedly the brain uses 20% of the blood in the body.

Tuesday, September 12, 2006

Memoirs of a Seizure

On second thought, a more appropriate title for this post might be NO Memoirs of a Seizure…

I was thinking back to what I remember from each time I have had a tonic-clonic seizure and it is pretty empty. I wonder if the brain is too occupied trying to deal with the extra electrical activity that it is unable to process input from the senses… or maybe it never transfers that information into long term memory (LTM). In any case, I usually remember what has happened from about 10 – 20 minutes before the seizure and from about 20 minutes after the seizure so at least a 30 minute chunck of time is simply not there.

One of the odd things about it is that I never believe that I have had a Tonic-Clonic / Grand-Mal seizure because I have no memory of them. I don’t know what one feels like, nor what I do during the seizure. I only have 2nd hand reports of the event.

So when I awake from a seizure and their is someone telling me about it, my mind can't grasp that as it has no memory... no memoirs of a seizure..

Sunday, September 10, 2006

Tribute to Steve Erwin

I love taking photos of wildlife. Today I was watching a Crocodile Hunter marathon on Animal Planet and was inspired by Steve Irwin's face-to-face documentaries with wild creatures. I whipped out my camera and went hunting in my yard for something worthy... I was pleasantly surprised to find this spider hanging out in the bushes. Although it is not as exciting as a Saltwater Crocodile or Indian Cobra, the spider is about 3 inches long. Armed with only my camera, I leaned way into the bushes and got this shot.

Now, in honor of Steve, read the next paragraph in your best Austraian accent:

"I'm creeping into the bushes and find this GREAT spider! Look at the size of it's web - nearly 5 feet in diameter and check out the zig-zag center of the web where the spider waits for unlucky prey! Whoaaa... looks like I have startled her... watch as she shakes the web back in forth to try to scare me off... back up mate!"

Friday, September 08, 2006

Meeting With GSK & The Epilepsy Institute of NC

Christa and I met with two representatives from GlaxoSmithKlien (the makers of Lamictal) and with the finance adminsitrator at the Epilepsy Institute of NC. We basically laid out a plan for few awarness events that we wished to undertake and then asked them to fund it. It went very well - they approved our modest budget and seemed very excited to be involved. The Institute said that they would reimburse us for costs and the GSK reps are going to provide us with forms we can use to apply for grants from GSK. Christa and I are very excited!!!!

Wednesday, September 06, 2006

Brain On Fire!

This is what you can do with an MRI image and Photoshop! In this case, an MRI of my brain! I can only imagine that when I am having a tonic-clonic seizure, my brain might look like this...

Sunday, September 03, 2006

Links: The Federal Review

Thanks much to The Federal Review for a link to Living With Epilepsy!

Their slogan is: Solving the world,s problems, one beer at a time! If you are interested in politics or are a beer connoisseur, take a look at their website. In addition to discussing world politics, they also discuss great beers. Although the combination is quite unique, perhaps the most stunning combination is their link to arch-enemies Daily Kos and Redstate on the same page! Bold indeed!

One of the contributors, Winston, over at the Federal Review has a son with epilepsy and he and I have been speaking about increasing awareness about epilepsy in North Carolina. I hope to meet him in person in a few weeks to discuss more about this.

Thanks again to the Winston & The Federal Review!

Friday, September 01, 2006

Long week...

It has been a long week with way too much to do. Christa has been busy coordinating efforts for the next planned awareness event at the Honey Bee Festival in Kernersville. We are excited about it, but still have a lot to do. I have been trying to work to get the Epielpsy Institute of NC website updated, but have not had a tremendous amount of luck in working with the developers. Evidently they close their office for the Friday before Labor Day... or in their case, Labor Days.

This weekend I am going to back post some more pictures of the Childrens Health Fair we attended. Feel free to drop back by...

Saturday, August 26, 2006

Health Fair - Part I

We got our group together today and went to a health fair in Lexington. It went extremely well. The five of us distributed a wealth of information about epilepsy. We spoke with at least 200 people.

I think what surprised me the most was how many people either had someone in their immediate family or knew someone with epilepsy; a boss, friend, co-worker, student.. I was also surprised at how many people we met that had epilepsy. It was fantastic to share experinces with them and speak about different medicines and treatments avaiable.

We met a girl that had been diagnosed with epilepsy less than a year ago. She was a bit shy about speaking about it, but Christa was able to get her to open up and have a good conversation with her. It was a very hot day and she was worried about having a seizure. We were all glad that she didn't let this stop her from having a go at the climbing wall.

Friday, August 25, 2006

No Seizures...

Great News... it has been around 10 days since I have had any noticeable seizure events! I am thrilled.

On the flip side, it makes for awful blogging. No seizures... no real rush to get the word out about living with epilepsy. That should be changing though. Christa, I, and a few other people will be distributing information about epilepsy at a children's health fair in Lexington. We made flyers and got a number of other handout material for the event. I'll post pictures and details about it tommorow.

Wednesday, August 16, 2006

1st Support Group Meeting

Last night Christa and I held our first epilepsy support group meeting. We had 5 other people attend, which was great for a first meeting! The group came to the conclusion that our focus should be on education and awareness, and that through these efforts, people that needed support would be able to network with others of us in the group. So, during our monthly meetings, we would split in to groups along the lines of who ever was in attendance... I hope this will work well, we shall see!

Tuesday, August 15, 2006

Sunday, August 13, 2006

Off Topic - Changed Template

As you can see, I changed my blog template again... Now I have to go through and modify it until it looks ugly again... at which point I will change the template again... uh... hmmm...

Friday, August 11, 2006

My seizures...

I frequently refrence my "small" seizures as being "partial-complex" ... This is not technically accurate. Mine don't really fit any of the convential categories. What might describes them best would be "aurors". They are an unexpected wave of sensation that interupts my thoughts and gives me a feeling like free-fall for the brain. Very strange stuff...

Keppra V. Sleep

Got home late last night. Did not take my meds until around 8... Although the Keppra I take seems to help with my seizures, it really keeps me awake. Did not fall asleep until 1 A.M. Although it does not make for a full night's rest, it does make for plenty of time to watch TV and play games. Currently, I am playing Civillization III. As for late night TV: The Daily Show and The Cobert Report.

Thursday, August 10, 2006

Hot air and universal health care

The first part of this week wasn't too hot, hence my number of simple-partial seizures dropped to zero for 4 days in a row. However, yesterday was pretty hot, and while waiting a few minutes in the car with no air conditioning on, I had one simple-partial. No more seizures that day as I stayed inside.

Just a few moments ago, I had one while speaking briefly to my supervisor about medical insurance benefits offered by employers. It is something I am pretty opinionated about, and I had a simple-partial while expounding about universal health care. I guess my enthusiasm for the topic must have put a bit of stress on my brain...

Monday, August 07, 2006

The Monday blues...

Monday again. Back to work. Not too stressful so far today, so that is good. No simple-partial seizures either. Very good. Probably due to lowering of temperature around her... now down to the high 80s.

Saturday, August 05, 2006

Friday not so good...

It was really hot yesterday, and I ended up having at least 6 simple-partial seizures near the end of the day. I called Christa to come pick me up in the case that I might have a grand mal seizure. We went home and I ended up sleeping 12 hrs straight. Feel much better now. No seizures so far today, so that is good. :)

Friday, August 04, 2006


I found this little jem of a search site. It filters out your searhes to just medical information. So that you don't get a lot of junk in your searches as with MSM or AOL or Goolge. Check out Medicow

Wednesday, August 02, 2006

East Coast Heatwave

On Sunday, the high temperature weather that was sweeping across much of North America finally made it to North Carolina. It has only gotten worse since then. Today was the highest yet with a heat index of around 104 degrees.

Like everywhere else, the air conditioing at my office is not quite able to keep up with the weather. Today and yesterday, I had a few more partial seizures. I suspect it is due to the heat...

Sunday, July 30, 2006

Good weekend.

This weekend went quite well. Relaxed a lot and did not have any seizures. Very happy about that.

Friday, July 28, 2006

Settings Adjusted

I got my VNS settings adjusted today. As my device is working well in reducing my seizures, I simply had them adjust the magnet-activation setting so that I could feel it better when I manually activated the VNS. (current was upped from .75 to 1.0)

In addition to the adjustment, Christa and I spoke with Dr. Dean and another staff member at the Epilepsy Institute about some projects. Christa is going to be setting up a support group for the triad area, and I will be doing some consulting regarding the Institute's website. Two other projects are in the works as well - more on them later.

Tuesday, July 25, 2006

Upcoming VNS Adjustment Appointment

On Friday I will be going in for another appointment with my neurologist, Dr. Dean. My current VNS settings are:
Pulse Width: 250
Frequency: 20 Hz
Off Time: 1.8 minutes
On Time: 30 Seconds
Current: 0.75 mAmps

The Cyberonics VNS has definitly had a positive impact on my number of seizures. It has taken quite a while to get the settings to an optimal level, but I feel pretty satisfied with them now. I don't intend to change anything besides the current of the magnet activation setting. I have it at .75 mAmps. I want to boost that to 1.0 mAmps.

Monday, July 24, 2006

Vacation to the Beach Cures Epilepsy!

I'm back from the beach... While on vacation, my seizures/day dropped to zero for all but 2 days!

I can only assume that going on vacation cures seizures. Sure, it is not a highly accurate scientific study, but with enough $$$ placed in the right hands it would probably pass the "stringent" US FDA testing standards. Now I just need some clever marketing strategy and a nifty name... how about a little blue sugar pill called Vactium. Take two of these each day while spending most of your day on the beach or sleeping and it will reduce your seizure activities by 50 percent or more!

Enough fun... Seriously, reducing stress in your life can reduce the number of seizures you have. This definitly works for me. When combining low mental stress, a VNS, and a few AEDs, I was able to eliminate them most days. A very good thing. I suspect that getting back to work and "normal" life will increase the number I have... However, maybe I should take up Yoga or some sort of meditation exercises to reduce stress during the week. Anyone know of any good books or websites?

Sunday, July 23, 2006

2000 Page Views!!

Sometime during the last week, I topped 2000 hits to Living With Epilepsy. I never dreamed I would get this many. Much thanks to all who have linked to my site!

Friday, July 14, 2006

Meta Blogging: I got Farked!

Somehow I got Farked. Yes, someone at Fark.Com posted a link to Living With Epilepsy. I can't find the link on their site (if someone would post it in a comment, I would be most grateful), but I have gotten a ton of hits from Although, it is likely the poster was making fun of my poems, I appreciate the link. When you run a small blog like mine, you take whatever traffic you can get. So whoever the Farker was that did the post, my thanks to you!

Thursday, July 13, 2006

More Epilepsy Limerics: Tall & Wide

Alright, due to some interesting events, I am wrapping up "Limerick Week" a day early. With these last two poems I made my best attempt at meeting the classical limerick form.

Start by introducing a person or place. Set up an interesting story. Then end the poem with a humorus twist.

This is not an easy when trying to keep on the topic of epilepsy. It involves introducing someone, making something really bad happen to them, then following that up by somehow adding a bit of a surprise and humor. Well, here are my results:

The Tall Man

There once was a man who was tall
But his epilepsy caused him to fall
..Smashes to the noggin
..Gave his body a floggin
Now he’s considered quite small

The Wide Man

There once was a man who was wide
But epilepsy made him fall to his side
..No smash to the face,
..But the hips and the waist
No longer his girth he must hide

More Epilepsy Limerics: Head to the Wall

Head to the Wall

I struggle to get some relief
From these seizures although they be brief
..They may make you fall
..Smash your head to the wall
They cause me nothing but grief

Wednesday, July 12, 2006

More Epilepsy Limericks: Drugs


Phenobarbitol, Keppra, Lamictal
Depakote, Dilantin, Trileptal
..Lyrica, Neurontin
..Valporic Acid
Zonegran, Topamax, and Gabitril

Tuesday, July 11, 2006

More Epilepsy Limerics: Insomnia

Insomnia I

Lamictal and Keppra are great
But they make me stay up so late
..I cannot sleep
..Not even a wink
Oh when will this insomnia abate?

Insomnia II

There is no sleeping at night
Getting some rest takes a fight
..To beat down those meds
..In a hole in my bed
Otherwise I'll be up till it’s light!

Monday, July 10, 2006

More Epilepsy Limericks: I forgot

I forgot

Memories are so hard to find
You search for them as if you were blind
..There’s nothing but darkness
..Your quest is so fruitless
If only the past you could find

Sunday, July 09, 2006

More Epilepsy Limericks: Post Seizure Confusion

Post Seizure Confusion

The blood still flows and is red
I’ve fallen down on my head
..The people around me
..Are scared and astound me
I’m simply glad I’m not dead!

Saturday, July 08, 2006

More Epilepsy Limericks: VNS Buzzing

VNS Buzzing

My VNS goes a buzzing
It causes a great deal of fluttering
..It rattles my throat
..Makes me bleat like a goat
Thank goodness it doesn’t cause stuttering!

Friday, July 07, 2006

Epilepsy Limerics: Grand Mal at the Beach

Epilepsy.Com has a Poetry Corner where they post poems submitted with themes on epilepsy. Some of them are quite good. Most are un-rymed. I prefer a bit more structure to my poetry. My favorte type of poem is the Limerick. So I thought I would write a few and then submit them. I'll post all my samples until I get one I feel is worthy.

If you have never heard a limerick before, I would recomend that you check out the definition in order to understand the structure and rhyme. You can check that out here.

As I will be taking a trip to the beach soon, I thought I would incorporate the location in my first poem. Although I have never had a tonic-clonic seizure on a beach, it seems like a fairly safe place to fall... hence the poem:

Grand Mal at the Beach!

Alive and breathing, I’m grand
At the beach there’s nothing but sand
..Its soft when you fall
..You’ll bounce like a ball
If only every-where there was sand

Coments welcome...

Thursday, July 06, 2006

A post with meat!

My wife said that my posts of late have been mostly fluff and that there was not much "meat" to them. I have to agree. I have not been spending as much time on my blog as I should. So from now on, I will try to post more substance and less fluff. As for "meat" - enjoy this rib-eye steak!!! ;)

Tuesday, July 04, 2006

Independence Day!!

Happy Independence Day! Today marks the anniversary of the date when the colonies in North America declared that they were no longer part of the British Empire. It is a big to-do here in The States. Lots of fireworks, banners, flags, and hot-dogs on the grill. Luckily, none of these things is proven to cause epileptic seizures!

Monday, July 03, 2006

Human Brain... on loan from the NIH

This weekend...

This weekend was pretty slow. I essentially bummed around the house, watched movies, and played computer games. It was nice to have a relaxing few days.

Friday, June 30, 2006

VNS Implant Picture

I try to post this pic quite a bit as it is a handy refrence when I want to show someone where the wires attach and where the pulse generator is located. Although you can barely detect them under the skin, it is not always easy for people to grasp the concept until they can see the diagram.

Thursday, June 29, 2006

The Blood of a Turtle Dove v. Epilepsy

Sacred Texts

This site lists the oddest remedys I have seen to cure epilepsy. Here are just a sampling of the cures:

Take a turtle dove, cut its throat, and let the person afflicted with epilepsy, drink the blood.

To Cure Epilepsy: Take nine pieces of young elder twig; run a thread of silk of three strands through the pieces, each piece being an inch long. Tie this round the patient's neck next the skin. Should the thread break and the amulet fall, it must be buried deep in the earth and another amulet made like the first, for if once it touches the ground the charm is lost.

To Cure Epilepsy: Take nine pieces of a dead man's skull, grind them to powder, and then mix with a decoction of wall rue. Give the patient a spoonful of this mixture every morning fasting, till the whole potion is swallowed. None must be left, or the dead man would come to look for the pieces of his skull.

To cure epilepsy, a black cock must be buried alive with a lock of the patient's hair and some parings of his nails.

Odd stuff indeed.

You can get all 109 refrences to Epilepsy from the site by clicking on this Link.

Wednesday, June 28, 2006

As for me / Slack Blogger / Off Topic

As for me...
I'm doing well. Not so many seizures. About the same as the previous few weeks: 0-2 a day. Last week was a little higher than this week so far. Probably due to the trip I took. Trips add stress - which is never good for seizures.

Slack Blogger...
Yes I know. No posts in 6 days. Pretty shamefull. I'll try to post a few things this week.

Off Topic...
The United States Senate spent a whole week debating whether to amend the Constitution to prevent flag burning (this is a huge problem here in the U.S. - there have been 34 flag burnings in the last 16 years)... it did not pass, but what a waste of time and tax dollars. It would have been much better to spend a week debating universal health care. There are 40 million people with no health care in this country. That works out to at least 400,000 people with epilepsy. I plan to write my Senators (Burr & Dole) and request that they quit wasting my tax dollars on political drivel and get back to working on real problems that the people of this nation face.

BTW: It is easy to contact your Senators - Click Here to find your Senator and the page from which to email them.

Thursday, June 22, 2006

National Society for Epilepsy e-Poll

The National Society for Epilepsy, a UK group, is conducting an online poll for people under the age of 25.

I think they are interested in just getting United Kindom results, but as a lot of citizens from the UK stop by here, I thought I would post it.

Their website also has a lot of general information on epilepsy that one might find useful.

Tuesday, June 20, 2006

Seizure Medicines :

This is a great page on the types of epilepsy meds, drug interactions, FAQs, side effects ...
If you have any questions about AEDs, this is a good place to start your search.
Seizure Medicines :

Monday, June 19, 2006

As for me..

Things are going well so far this week. As always, heading back to work does seem to increase the # of seizures I experince during the day. Christa thinks that it may be that I spend too much time in front of the computer... but what am I to do? I am a computer tech... Could just be the extra stress though.

Sunday, June 18, 2006

Happy Father's Day!

Today is Father's Day here in The States. I would like to wish any fathers that happen to stop by a very happy one.

I have been fortunate to have a great dad that has taken great care of me over the years and has always striven to get me the best medical care for my epilepsy he could.

Thanks Dad.

Wednesday, June 14, 2006

Does the VNS work?

The most frequent question I get is whether the Cyberoinics VNS works. See for yourself. I have graphed my seizure activity for the last two months - blue line shows # of seizures per day - green line shows average daily seizures for past seven days. Click on the picture for greater resolution & graph key.

Tuesday, June 13, 2006

Roller-Coaster v. VNS

Yesterday I road my first rollercoaster since getting my VNS implanted. At Carowinds (a theme park) they have a coaster called Top Gun. It is one of my favorite as the ride has all the "bells & whistles", but is very smooth. You don't get jerked around a lot. So I thought this one would be good to try first.

The harness fit tight over the shoulders, and did not press against the VNS. During the ride, I did not notice any contact with the harness against the device, however, I was moving 60 mph and enduring inverted loops that pressed my body against the seat at 5 times the Earth's gravity. Evidently it did knock the VNS around abit as today the area around the device is a little sore.

My advice: Wait a several months after having surgery before riding a modern steel coaster that uses a chest harness. Examine the harness before riding to make sure it will not press against the VNS. Finally, ask someone to find out how "jerky" the ride is as you don't want the harness to slam or pull on the device.

Friday, June 09, 2006

Cyberonics Questioned On Stock Options

Questions Raised on Another Chief's Stock Options - New York Times

My wife heard a brief mention about some questionable stock options given to executives of Cyberonics this morning on CNN. I did not get to hear it, so I searched this morning for the news on CNN.COM. Never found it. I did further research and found it at the New York Times.

After reading the article, it turns out that the whole report by this guy Amit Hazan, is completely misleading. He cites "instant paper profits of 2.3 million" for the CEO. This is insane and simply untrue. The executives have not even exercised their options that they received in 2004. Exercised at current price, the options are worth worth 600k for the CEO and the other executives options are worth 40k.

It was simply poor judgement for any of the news outlets to even report on this document by Hazan before checking facts. The stock ended up dropping by 16 percent, then regaining nearly all it's value back. But some people lost a lot of money due to an over-zealous analyst and sloppy reporting.

A Little Extra Sparkle

A new blog, A Little Extra Sparkle, posted this quote refrenceing epilepsy from the book of Matthew:

Matthew 4:23-24
And Jesus went about all Galilee, teaching in their synagogues and preaching the gospel and healing every disease and every infirmity among the people. So his fame spread throughout all Syria, and they brought him all the sick, those afflicted with various diseases and pain, demoniacs, epileptics, and paralytics, and he healed them.

Thursday, June 08, 2006

Who Invented the EEG?

Working in Germany during the 1920s, Hans Berger, a psychiatrist, developed the human electroencephalograph (EEG - brainwaves'). Its important application from the 1930s onwards was in the field of epilepsy. The EEG revealed the presence of electrical discharges in the brain. It also showed different patterns of brainwave discharges associated with different seizure types. The EEG also helped to locate the site of seizure discharges and expanded the possibilities of neurosurgical treatments, which became much more widely available from the 1950s onwards in London, Montreal and Paris.

Source: World Health Orginization (WHO) Factsheets

Tuesday, June 06, 2006

Monday, June 05, 2006

New VNS Settings: 250 Pulse Width

Friday I requested that they increase my VNS settings for Pulse Width from 130 to 250.

My settings are now at:
Frequency: 20 Hz
Pulse Width: 250
Off Time: 1.8 min
On Time: 30 seconds
Current: .75 mAmp

The increase causes my voice to break up quite a bit, but it is slowly getting better. I used lozenges over the weekend to help with the throat irritation.

Good news: No seizures over the weekend.
However: I have already had 2 today…

Friday, June 02, 2006

Epilepsy Activism

Christa and I met with Dr. Dean today and discussed a number of different projects we would like to start in order to help people with epilepsy. About a year or so ago, Dean moved the Epilepsy Institute of NC to a new facility. In addition to Physician's offices, she also got enough room for a auditorim and several other rooms that can be used for outreach and educational purposes. We are quite excited and are looking forward to working with her to start some support programs for the region's eplepsy community.

Thursday, June 01, 2006

Seizures v. Hard Work

Last 5 days have been very good to me. No seizures... even at work.

My Neurologist's analysis of my EEG indicates that when I get sleepy, my mind has a harder time "fighting off" the extra electrical activity in my brain. Hence when I am sleepy, I have a better chance of having a seizure.

My thoughts on this: Last few weekends I have been doing some hard physical labor landscaping the yard and painting on my parent's house.
Hard physical labor = good sleep.
Good sleep = not tired during the day.
Not tired = no seizures.

Tuesday, May 30, 2006

Off Topic - Ugly Blog

Yes. I know. My blog is still ugly... but it is ugly in a "not green" sort of way. So that is an improvement. Bear with me.

Friday, May 26, 2006

Off Topic - Update

Arrrggg... none of my graphics or colors are working very well. I am going to have to stop for the day. Probably won't get back to fix this until Monday.

Off Topic - Bowing to Public Pressure

This is the type of color scheme you get when you bow to public pressure - Blue, Pink, Lavender.

Thursday, May 25, 2006

Off Topic - Goodbye Green!

I will be changing the color scheme for the blog to something better over the next few day. Most likely, it will take several changes before I find something I like, so bear with me as the colors change. Oh, and feel free to comment on this post if you have suggestions or sarcastic comments.

Wednesday, May 24, 2006

EpiQ Teen

EpiQ Teen is the first epilepsy site I have found that is dedicated to teenagers. It has a lot of interesting and helpfull information tailored towards teenagers who have just discovered that they have epilepsy.

One of the articles I found most interesting was advice on who and how to tell about your epilepsy. This is the article:

Telling others about your epilepsy

Teens are faced with many issues, such as dating, and what you friends think of you. Some even feel they have to change to be part of a group or fit in. But you don't have to feel like you don't want to stand out because you have epilepsy because-
As a teen, you're dealing with lots of issues - like dating or what your friends think about you. You may feel like you have to change who you are to fit in - just be part of a group. You don't want to stand out or be different because you have epilepsy -but epilepsy doesn't define who you are - each person in our world is unique and it's just one of many special things about you! And differences are what make the world an interesting place! Who? And When?

After finding out you have epilepsy you may think-Who do I tell? And -When's the best time? The people who care most about you and who you see more often will want to know about your epilepsy - family, friends, roommates, neighbours, and co-workers are great sources of support.

Ask these questions when you're trying to decide:

* Who loves me and wants me to live the best possible life?
* Who do I see most often
* Who will notice changes that signal the start of my seizures or a reaction to my medication
* Who can help me with small or errands that may not be safe for me to do by myself?
* Who can I rely on in an emergency to help, check my medication record and contact my family doctor?
* Who can I trust with a key to my home to come in and check on me?

Tuesday, May 23, 2006

Epilepsy & Behavior Journal

The Epilepsy Foundation has partnered with the Epilepsy & Behavior Journal to provide selected articles from their journal free of charge! As most of these journals charge $30 bucks (US$) or more to download an article, this is a great service. If you have the desire to check out original research on epilepsy, check it out.

Monday, May 22, 2006

Epilepsy v. Landscaping

This weekend I did not have any seizures! I spent the entire weekend landscaping an area of my front yard. We ripped out about 20 Creeping Juniper and in their place added flowering shrubs, ornimental grasses, and bulbs of various sorts. The results were fantastic. (It was not without cost... I was completely worn out after ripping out the juniper on Saturday. I ended up sleeping 12 hrs, was completely sore, felt like i had been beat, and did not make it to my religious facility of choice the next morning)

Although I normally have fewer seizures on the weekends, this was one of the best. If I were to conduct my statistical research the way the Associated Press does, I could safely report that landscaping your yard reduces seizure activity in the brain.

(this study was of one individual over a two day period)

Friday, May 19, 2006

What a slacker...

Ok. I admit. I have been a pretty slack blogger this week. Posting nothing at all in a full 7 days. To any frequent visitors. I apologize.

It will all be good soon. Like some hack magician, I will back-post the entire week to make it appear that I have been a busy little blogger. And then, like an illusionist, I will make this post disappear altogether.


Thursday, May 18, 2006

White Matter Atlas - Diffusion Tensor Imaging Atlas of the Brain's White Matter Tracts

Wow! The White Matter Atlas site shows Diffusion Tensor Imaging (DTI) scans. Once it loads (lots of data) you can use tools to scroll through DTI scans of a brain. They are in color and are very cool. Highly recomended.

Wednesday, May 17, 2006

Jen's VNS Therapy Diary

This blog chronicles a lady with a VNS who has it to treat depression. She writes a lot about the side effects she experiences. She is one of the few bloggers that list their settings.

Friday, May 12, 2006

Physical Properties of the Nerve Fibers

Each of the three types of nerve fibers that are in the Vagus nerve have different physical characteristics. The primary differences are in the diameter of the nerve and the presence of myeline. Large diameter nerves transmit signals faster. Nerves with a "coating" of myelin transmit signals faster.

Fiber Types:
- myelinated
- largest diameter axon (5 - 20 micrometers)
- fastest nerve impulse transmission (27 - 280 mph)
- myelinated
- axon diameter is smaller than A fibers (2 - 3 micrometers)
- slower impulse transmission than A fiber (32 mph)
- unmyelinated
- smallest axon diameter (0.5 - 1.5 micrometers)
- slowest impulse transmission (1 - 4 mph)

So... does any of this matter? Not so much. It is enough to understand that the different types of fibers control different types of organs. It is belived that the C-Fibers in the Vagus nerve are responsible for controlling slow things, like the heart. A-Fibers most likely control things like the voice box. B-Fibers... well, I have not come accross research on the B-Fibers (if anyone has any, pls let me know).

Here is the important part: It takes drasticly different VNS settings in order to activate the different types of nerve fibers and cause them to send signals...

You will have to wait till tommorow to learn about that... yes, I can tell the anticipation is killing you. ;)

A Cyberonics visitor!

This morning I got a hit from someone on the Cyberonics domain! I believe it was my first visit from the company that makes the VNS. They did not stay long. Maybe they will poke aound my Living With Epilepsy main page on the next visit...

Thursday, May 11, 2006

Research of the VNS

I have been doing a lot of research on how the Vagus Nerve Stimulator works. One of the key things to understand about the system is the nerve bundle itself. The Vagus Nerve contains 3 types of nerve fibers: A-fibers, B-fibers, and C-Fibers. Each type of nerve fiber/cell requires a different stimulus in order to trigger the cell to activate & send a signal toward the brain.
The nerve bundle in the post below is not a vagus nerve, but one of the smaller nerve bundles in the body. Over the next few weeks, I will post more about the type of stimulation a partcular nerve fiber needs in order to reach the activation threshold.

Cross Section of a Nerve Fiber

This is a cross section of a peripheral nerve. The blue arrow is pointing out the individual nerve fibers that look like an eye ball with a pupil in the middle. The red arrows are pointing to the outer dark border of the nerve fibers. This line coresponds to the Neurilemma, or Schwann-Cell Myelin Sheath. The black arrows are pointing to what would be the"pupil of the eye" in our analogy, which is the axon and the axoplasm, which is the cytoplasm of the axon. These are the main features of the Nerve Fiber that can be seen in a cross section.

Blue Arrows - Nerve Fiber

Red arrow - Neurilemma or Schwann-Cell Myelin Sheath.

Black arrow - Axons of Nerve fibers

Wednesday, May 10, 2006

You know you have epilepsy when....

I ran into a huge string of posts on the Epilepsy Foundation messageboard. The topic was: You know you have epilepsy when...

Tuesday, May 09, 2006

Webcast of Vagus Nerve Stimulation

Super cool webcast of a VNS surgery. Not for the faint of heart. Scapels, organs, blood all there. If you want to see what your surgery will be like or what it was like, check it out. They show the vagus nerve and how the leads are wrapped around it. No nifty diagram here, the real thing!

Friday, May 05, 2006

In the lobby of the Epilepsy Institute of NC

While waiting in the lobby for Dr. Dean, Christa and I met 2 other VNS patients. This was a first for us as there were 2 there and we all had VNS. Amazingly enough, we had all had our implants within a 2 month span.

It was nice to be able to share some of the experinces we had with the impants. All of our incisions were healing quite well, in fact, I wouldn't have been able to tell that the young girl had a VNS except for the magnet she had hooked to her belt. The other lady was doing quite well healing as well. One thing she recomened was Curad Scar Therapy. I have not used this, but intend to. (If anyone reading this has used the product, please leave a message on how well it works!)

Statistics v. VNS

I went to see Dr. Dean today for my VNS checkup. I brought with me a nifty chart of the number of seizures and some pretty cool graphs of the number of seizures I had over the last 4 weeks. The graph clearly showed an improvement over the last 4 weeks, so after consulting with Nurse Cindy and Dr. Dean, I had them keep my VNS settings the same. The graphs were very cool and I will create some images of them in color and post them in the next few days.

Tuesday, May 02, 2006

Epilepsy Foundation - North Carolina

Today, Christa and I met with the director of the NC chapter of the Epilepsy Foundation of America. We learned all about the events that their chapter has planned this year. Their organization is primarily focused on the medicine fund for people that cannot afford anti-epileptic drugs (AEDs). We volunteered to help out with a variety of fundraising efforts, including an upcoming Chili Cook-off that will be held at the local farmer's market. If anyone is interested in the details, let me know.

Monday, May 01, 2006

As for me...

This week is starting out quite well. I did not have any seizures on Saturday or Sunday. Today I have only had 3 simple-partial seizures. My VNS, Keppra, and Lamictal seem to be doing their job fairly well today. :)

Sunday, April 30, 2006

Treating Epilepsy in Ancient Greece - Cactus Blog

There are all kinds of interesting treatments out there for epilepsy, but this is one of the most interesting I have found in a while. Evidently, people in Anchient Greece used a sucullent plant called Biting Stonecrop to treat the condition. Regardless if it worked or not, it has very attractive flowers.

Wednesday, April 26, 2006

Myths About Epilepsy... Dispelled

The Epilepsy Association of Central Florida put together a brief page dispelling common myths about epilepsy. A quick read and very informative.

As a side note: Their website has a great design. I'll probably copy the heck out of it when I start putting together a website for the epilepsy support group Christa and I are starting.

Tuesday, April 25, 2006

Live with passion

Kathy Sierra, who I have quoted before, wrote this very inspiring article about a seizure she had and how it reminded her again to live life with passion. Here is a selection from the piece:

...Sunday was my birthday, which capped four fabulous days at the Telluride Bluegrass Festival. Walking back to my hotel Sunday evening, I collapsed in the street and began having seizures. The ambulance came, and I spent the night in the ER. As I slipped in and out of consciousness, I thought I was going to die.

I probably wasn't in any serious danger once I was in the care of the paramedics, but that's not what it felt like. The point is that I truly believed that I might not come out of it.

The next morning, when it was clear I was going to be fine, everything looked a little more beautiful. Trees were greener. The sky was bluer. People were nicer and better-looking. And all I could think about was how damn lucky I was...

...So here I am, appreciating everything in that way that you do whenever you've had a close call (or at least thought it was a close call)...

...And we know that if we can hang on to this feeling, our lives will be richer. Or as Tyler Durden says in the movie Fight Club after threatening to kill the shop clerk unless the clerk pursues his original dream of becoming a vet, "tomorrow his breakfast will taste better than it ever has..."

But somehow, it's so easy to forget. So easy to slip into that daily world of things that seem important, but that if faced with the last day of our life would seem ridiculously trivial...

Really, do check it out. For anyone that has ever had a near death experince, it is just a reminder to get back on track. For anyone that has not had a near-death experince, it's great to get the insight...

Here's to living each day with passion : )

Monday, April 24, 2006

So, does your VNS work?

I have gotten a few questions recently asking about my VNS: Does it work?

I think that most people simply want a Yes or No answer as to whether it completely stopped you from having seizures. Unfortunately it is not that simple. The VNS will not cure you of epilepsy, but it can help control seizures or reduce the intensity and after-effects. The level of effectiveness varies between persons.

The studies by Cyberoics indicate that most people take anywhere from 3 months to a year before they get meaningful results from the device. In addition, many people report increasing effectiveness the longer they have the VNS.

Given all that, reprhasing the question would be the best way to get a meaningful answer. Instead of "Does it work?" ask, "What type of results are you getting from your VNS so far?"

So far, the VNS seems to be reducing the intensity and severity of my seizures. I have had mine a little over three months now and am already seeing some impact on my seizures. I have high hopes that the device will bring additional improvement.

Sunday, April 23, 2006

As for me...

No gran mal / tonic-clonic seizures in over 3 weeks now. I think that chaning the VNS settings have made a difference. I am still having smaller seizures that intrrupt my conciousness... but they are very very mild. Unfortunately, they occur more often when I am intently concentrating while reading information from a computer screen. I didn't spend much time at all on a computer this weekend and have had zero manifestation of seizures of any sort.

Saturday, April 22, 2006

Off Topic: Biltmore Estate

We went to Biltmore Estate in Ashville this weekend. Christa and I had fun taking pics in the Garden. This is one of a groteste with a fountain. He seems somewhat upset about the whole thing.... it could be because he has a never ending flow of water spewing from his mouth... that or that his head is mounted on a stone wall.

In either case, the monocrome photo came out better than the color. Click on it for the full size.

Wednesday, April 19, 2006

Epilepsy Support Group In Charlotte, NC

Christa and I went to an epilepsy support group meeting in Charlotte to see how their group was run and how their meetings were conducted. We learned a whole lot and made a number of contacts. Over the next few weeks we will be working to start a support group in our area. If anyone out there has advice, please send some!

Tuesday, April 18, 2006

Epilepsy Advocate

This website has information about Medicare plans for Epilepsy: Epilepsy Advocate
It explains a lot about Medicare Part D - the prescription plan enrollment & coverage.

Friday, April 14, 2006

The 1001st Visitor!

I recently had my 1001st visitor to this website! The visitor was from Clemmons, North Carolina! Not too far from my house! Thanks for stopping by!

I never really thought when starting this site that it would be of too much use, but it seems that some of the articles I put out here are actually helpful. I get a lot of hits on how to remove steri-strips, pictures of an EEG, MRI images of my head, and people looking for information about the side effects of taking Keppra and Lamictal.

To any fine visitors - hope you enjoy the blog.

Wednesday, April 12, 2006

Animation of a Seizure

Bottom line: This is the best description and diagram of a seizure I have seen. The page has an animation of two types of seizures and describes the workings of the brain in a detailed, but easily understood manner. Epilepsy.Com did a top notch job on this one. Animation of a Seizure

Monday, April 10, 2006

WWE v. Gran Mal Seizure

I am watching some WWE Monday Night Raw wrestling... just saw some guy get thrown out of the ring and then another guy grabbed him and smashed his head into the stairs. As fun as it may look on TV, getting your head smashed into anything is not so much fun. Anytime I have fallen from a seizure, I end up looking like I got beat up by a guy with a baseball bat. If I could only find a concrete floor as soft as the ones next to the wrestling rings...

As a side note, Rick Flair, The Nature Boy, is the best wrestler of all time... WHOOO!!!

Friday, April 07, 2006

Epilepsy Support Group

Christa and I are working on setting up an epilepsy support group in our area. Evidently there was once one sponsored by Wake Forest Baptist Medical Center, but it is no longer meeting. Today we are taking some sample flyers to show Dr. Dean. We hope to be able to use her facility for at least the first few meetings.

We have never been to an epilepsy support group before. If anyone reading this has some information or advice about starting and running one, please let me know.

Here is a Yahoo online group if anyone is interested: Epilepsy Support Group

Tuesday, April 04, 2006

Epilepsy Foundation of NC - Charlotte, NC - from SupportWorks

I found the website for the nearest epilepsy support group... it is in Charlotte... 2 hours away. Not so practical for me.

Monday, April 03, 2006

Another Epilepsy Blog

I am always on the lookout for more people blogging about epilepsy This person just started. There are a handful of articles of interest. Check it out.

Sunday, April 02, 2006

The weekend...

I made it through the weekend pretty good. The bruises are healing quite well and are not as sore anymore. I did not have any more simple partial seizures or generalized tonic-clonic seizures. So that was very good. I am headed back to work tommorow. About half the time I have a simple-partial seizure, I am working at my computer, so this will be a good test of the new settings... hmmm... as I write this, I realized that due to my job and my choices of entertainment, I probably spend half of my waking hours on the computer... which might explain why I have about half of my seizures during that time. Oh well.

Friday, March 31, 2006

Settings Changed

I took the day off work as I was pretty beat up from falling last night. Both arms got bruised and my head got pretty smashed up. During the morning and afternoon I had about 6 more simple partial seizures. I made and appointment to see Dr. Dean, and after discussing with her various options, I decided to have my VNS turned back down to the setting it was at 4 weeks ago. Now it is at .75 mAmps of current, 1.8 Off time, .5 on time, 130 phase pulse. Although that is considered low, it seemed to be working fairly well a few weeks ago. We shall see...

Thursday, March 30, 2006

Second seizure in less than a week...

Please say a little prayer for Scott as you doze off to sleep tonight. He had a grand mal seizure this evening while at work. He banged himself up pretty badly - bloody lip, bruised arm and elbow, huge knot on his forehead. His co-workers stated that the seizure lasted several minutes but he did not stop breathing. (Thank God for that small miracle!!) Scott is currently resting as he is very tired. Tomorrow we will head back to the Epilepsy Institute to have his VNS settings checked (and lowered.) I'll post more tomorrow to let everyone know how Scott is doing.

Monday, March 27, 2006

The Buzz is Back!

I got my VNS turned up on Friday to a current of 1.0 mAmp. I can feel it buzzing quite clearly when it pulses. It is not so bad that I notice it all the time. Just when I am not concentrating on something else. Like the other times when it has been adjusted, I'm sure I will get used to this as well.

I'm still taking my Lamictal and Keppra. Both which keep me pretty wired. Last night I did not take my meds until around 8... I did not get to sleep till nearly 1 am today. This afternoon I took them around 4:30. I am finally feeling sleepy. I'll try to post something of substance tommorow. G'night.

Friday, March 24, 2006

Google Finance - CYBX

I have been getting a lot of hits from the Google Finance website. Evidently the Google search engine believes that this site is relavant to investors. My thought is that the Google search engine is biased toward it's own blog hosting site: Blogspot.

In any case, If you are here hoping to get the scoop on the VNS device, you may be in luck. I have a ton of posts about the surgery and effacacy of the device... based solely on my own experince. So far, my experince has been fairly positive, and the side-effects are relatively low compared to most AEDs. Being that there are a limited number of Anti-Epileptic Drugs, having one more option is nice.

Regardless of what many patients may think about Cyberonics, I have to give them a lot of credit for investing many millions of dollars in an attempt to help those with elpilepsy, which is a relativly very small market for a medical product.

As for investing, if the VNS works well enough that I can continue working, I'll probably buy some stock.

Another seizure...

I had another seizure today. The intensity was not as bad as a "typical" tonic-clonic seizure. Christa says that I did not convulse much, but moved my arms and legs some and could not respond to her. She said it did not last longer than a minute.

All of this is good... if I would have had a Gran-Mal / Tonic-Clonic generilized seizure, but... if it was increase in intensity of a Simple-Partial seizure, that is not so good.

After the event, I went back to see my neurologist and had Nurse Cindy adjust my VNS setting to increase the "off period" of the device. I also had her increase the current to 1 mAmp. They also did an EEG, but did not find anything especially different from past EEGs.

Support Group & Late Night Meta-Blogging

Lol... no, not a support group for meta-blogging! I would really like to change the look of the blog, split it into 3 frames, get rid of the green that is starting to make me sick. That being said, I have no idea when I might get the time to work on it. After my last trip to get my VNS adjusted at the Epilepsy Institue, Christa and I decided that we should start a local support group for people with epilepsy and their caretakers. So we are going to get started on that. In addition, I am working on some ideas for manufacturing some nifty widgets. While at the same time, I am writing a text on my personal philosopy. Great... now my sinuses are acting up. I have to get some sleep. Good night and good luck.

Thursday, March 23, 2006

Works? Maybe...

A few minutes after I scanned it, it seemed as if my head might be a bit "clearer", so maybe it helped. It is now about 50 minutes post scan and I have not had any partial seizures even though I have been working intently on my computer; writing emails, running reports, and now blogging during lunch.

VNS Magnet v. Partial Seizures

While working, I had what may have been a small partial seizure. Sometimes I get more than one of these at a time, so I used my trusty little magnet. We shall see if it helps.

Wednesday, March 22, 2006

VNS Magnet Expose

I have an almost insatiable curiosity, so once I got ahold of a spare Cyberonics VNS Magnet, I had to know what was in it. Cracking open the case was a bit difficult. I used a hack saw, utility knife, screwdriver, plyers, and a Vise Grip. Once I got it open, I found out why they encase it in plastic. It is a very strong magnet. Strong enough that you could pinch your finger or other extremities between the magnet and steel. If anyone has questions about the magnet, let me know and I would be glad to post about it.

Tuesday, March 21, 2006

Another one...

Had one more partial seizure today. Same type thing as before. Had it while working on a document. Well, that is only two in over a week. Not so bad.

A little flicker?

I just had a partial seizure while working at my computer. One of the ones where my concentration is momentarily broken and I experience a strange halucionary feeling of time distortion/stopping. This is the first one I have had in over a week.

Sunday, March 19, 2006

MSN loves Living With Epilepsy

Every day I check the number of hits to this website, what part of the world from which the hits originate, and what searches are used. MSN Search site puts this blog in the top 10 list for just about any search that includes the words epilepsy, gran-mal seizures, or VNS. Although this is very flattering, I am concerned that people are not getting the information they desire.

For any of you searching for some detailed information about epilepsy, your first stop should always be the Epilepsy Foundation. Visit there first and if you want some more personal and obsure information about epilepsy and VNS, spend a bunch of time here on Living With Epilepsy.

Friday, March 17, 2006

The VNS Experience

I just got back from the Epilepsy Institute. Today was my appointment to go in to have my VNS adjusted. As I just had my VNS implanted in January, I am getting frequent adjustments to the current and frequency of the pulse generator. So today I was going to have the current upped to 1.0 mAmp, but it was causing a strong feeling of constriction in the throat along with a buzzing in the thoat like a large pack of honey bees. Nurse Cindy, in her infinite wisdom, instead suggested that I have the frequency of the pulse increased. She moved it to 30 seconds on every 1 minute 10 seconds. So the buzzing is at a tolerable level. I hardly notice it.

While at the Epilepsy Institute, Christa and I spoke with a few patients and their caretakers. It was nice to be able to compare experiences with them. Christa was able to identify with a mother and grandmother of a young patient and I was able to relate to the experinces of another lady that had a VNS. I gave them the link to my blog. (if any of you are reading this, I enjoyed speaking with you and thanks for visiting.)

Happy Saint Patricks Day!

I hope you all are having a happy Saint Patricks Day! As my website is currently a disturbing color of green, I don't think that I will have to "dress it up" to be festive! For anyone not familiar with the legend, evidently Saint Patrick, among other things, drove the snakes from Ireland. As for the leprechans, rainbows, shamrocks, and pots of gold, check the whole thing out on Wikipedia.

Now, quit reading my blog on epilepsy, go get some green beer, get in the spirit, and be Irish for a day!

Visitors from Planet Earth

Every now and then I get visitors from NASA (National Aeronautics and Space Association). I would just like to go on record to say that you all are my heros! Thanks for coming out!

Thursday, March 16, 2006

Anticipation of buzzing...

Tommorow I get my VNS turned up to 1.0 mAmp. I suspect that it will probably drive me crazy for a few days. On the plus side, I haven't had a seizure all week long. Maybe this VNS thing is starting to work. Maybe just placebo... but for brain conditions, I'm not sure there is a difference. If the objective is to stop your brain from malfunctioning, and you are able to "trick" it by taking a substance that has no know effets, well, your brain must have figured out a way around the problem. Hence, placebo succedes! But, I digress. One mAmp seems like a lot of electrictiy... even though the VNS will push through many times more than that. I plan to go ahead and get it moved up to 1.0, then stay at that level for 3 months... or move it lower if it bothers me. The VNS physicians manual says that there was no coorelation to the amount of electricty and the results, so why push it too far. I don't know... I will keep you posted on the results.