This is a blog about epilepsy. I have lived with seizures for 25 years now and I want to share my experiences to allow others with epilepsy a chance to compare their experiences to mine and to allow those without epilepsy to understand further the condition and how it effects one. I had the VNS device implanted 4 years ago and have posted on that extensively. Please feel free to comment and I will try to respond.
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.
Thursday, April 27, 2006
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.
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 : )
...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?"
Answer:
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.
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?"
Answer:
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.
Thursday, April 20, 2006
Talk on the my.epilepsy.com board...
My.Epilepsy.Com has a lot of good information on epilepsy as well as message boards and chat rooms. I ran into a pretty good discussion on how people struggle to maintain a "normal" life. Here is one of the posts on that page:
I remember when my epilepsy showed up, how frightened I was. My whole world as I knew it, changed. I was 15, active in sports at school and outside of school. That changed with the T/C's, drop seizures and hard jerks. I found out who my friends really were and lived in fear that I would have a seizure at school, a school function or game.
Yes, I learned to work around them and they became a 'normal' part of my life, but I will never forget the shock and fear of when they first came to be. Little was known then and it was not something that was talked about by anyone.
I adjusted, but it was not an easy adjustment. To have a means of reaching out to others with epilepsy would have made such a difference back then. It is so wonderful to have that now and that no one be made to feel hesitant to be here. I have learned so much on this site and it has been such a emotional outlet with the 'talk therapy'. Laughter is wonderful too and so needed.
I remember when my epilepsy showed up, how frightened I was. My whole world as I knew it, changed. I was 15, active in sports at school and outside of school. That changed with the T/C's, drop seizures and hard jerks. I found out who my friends really were and lived in fear that I would have a seizure at school, a school function or game.
Yes, I learned to work around them and they became a 'normal' part of my life, but I will never forget the shock and fear of when they first came to be. Little was known then and it was not something that was talked about by anyone.
I adjusted, but it was not an easy adjustment. To have a means of reaching out to others with epilepsy would have made such a difference back then. It is so wonderful to have that now and that no one be made to feel hesitant to be here. I have learned so much on this site and it has been such a emotional outlet with the 'talk therapy'. Laughter is wonderful too and so needed.
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.
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.
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!!!
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
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.
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