Ok...I've got a bone to pick about this topic. Most epilepsy web sites report that sleep deprivation can cause seizures, and hence, it is important to track in your seizure diary. But that's not always the case. For example, sleep deprivation never causes my seizures. Too much sleep, or waking up, and then falling asleep again, seems to have a greater effect on my seizure activity.
I'm not saying that sleep deprivation doesn't cause seizures. All I'm saying is that sleep, in all of its forms, is something to track in your seizure diary.
So why is sleep a problem? It seems the experts don't know for sure. But what they do know is that the sleep-wake cycle affects brain activity. Epilepsy.com has an interesting article on this very topic, although they (in my humble opinion) improperly entitle it "Sleep Deprivation".
Tracking sleep in a seizure diary is not that difficult. I track when I go to bed, when I wake up, how well I slept (if I can remember), and whether anything affected my sleep (such as jet lag or cold medicine). By doing this, I can look for the sleep patterns that seem to work (e.g. sleeping 7 good hours works, anything beyond seems to cause problems).
Which brings up another point: don't just consider too much sleep or too little sleep. Look for the combinations that affect sleep patterns. In my case, I track exercise and sleep, alcohol and sleep, and medicines (such as cold medicine or sleeping pills) and sleep. All of these affect how well I sleep.
Good luck and happy tracking.
Thursday, December 13, 2007
Friday, December 7, 2007
What to track: caffeine
Coffee. As a caffeine addict from a very early age, I can tell you how much I love it. As someone with epilepsy who takes 1800 mgs. of Tegretol XR a day, I can tell you how much I need it.
The problem is, caffeine can be detrimental to some individuals with epilepsy. According to Stephen Cherniske in his book, Caffeine Blues, "when you consume caffeine, the drug begins its effects by initiating uncontrolled neuron firing in your brain. This excess neuron activity triggers your pituitary gland to secrete a hormone that tells your adrenal glands to produce adrenalin." The adrenalin picks you up for a while, but also leaves you tired when it wears off.
According to epilepsy.com, "it does act as a stimulant and a few people report having seizures after they consume it." I fall into that category. But not everyone does. For that reason, it is important to track. If you can rule it out as a seizure trigger, then you can enjoy it without fear.
In my case, when I realized it was a trigger, I started to cut back, drinking less of it and drinking half-decaf. I tracked this new combination for awhile, and this seems to have done the trick. However, I also know that my body has become more sensitive over time. So, I continue to track my intake in case the less potent coffee starts to become a problem.
How do I track it? I use EpiTrax to record the approximate time I drink it, and then record what I drink, e.g. "large 1/2 decaf latte" or "small 1/2 decaf coffee". Over time, I can see the trend of my caffeine intake or look for trends between seizures and coffee.
For more information on coffee and seizures, check out this search on google.
The problem is, caffeine can be detrimental to some individuals with epilepsy. According to Stephen Cherniske in his book, Caffeine Blues, "when you consume caffeine, the drug begins its effects by initiating uncontrolled neuron firing in your brain. This excess neuron activity triggers your pituitary gland to secrete a hormone that tells your adrenal glands to produce adrenalin." The adrenalin picks you up for a while, but also leaves you tired when it wears off.
According to epilepsy.com, "it does act as a stimulant and a few people report having seizures after they consume it." I fall into that category. But not everyone does. For that reason, it is important to track. If you can rule it out as a seizure trigger, then you can enjoy it without fear.
In my case, when I realized it was a trigger, I started to cut back, drinking less of it and drinking half-decaf. I tracked this new combination for awhile, and this seems to have done the trick. However, I also know that my body has become more sensitive over time. So, I continue to track my intake in case the less potent coffee starts to become a problem.
How do I track it? I use EpiTrax to record the approximate time I drink it, and then record what I drink, e.g. "large 1/2 decaf latte" or "small 1/2 decaf coffee". Over time, I can see the trend of my caffeine intake or look for trends between seizures and coffee.
For more information on coffee and seizures, check out this search on google.
Monday, December 3, 2007
NeoMed Goes to Phili
Hey all:
Just got back from the AES (American Epilepsy Society) Show in Philadelphia. I have to say, I was debating whether or not to go. But now that I'm back, I'm glad I went.
The show floor was full of interesting companies, from epilepsy programs and clinics, to all the big pharma companies, to software companies and book publishers. Most of the software focused on EEG reading software that physicians could use. There were also hundreds of research projects on display that were there for the browsing. Not being a doctor or researcher, I didn't understand half of them! Still, it was nice to see all of the action and research surrounding epilepsy. Personally, looking from the outside in, I've had a tendency to be jaded, thinking that very little was being done for those with epilepsy. But I'm here to tell you that lots of people are working on our behalf. AES definitely proved that.
My seizure diary software, EpiTrax, was well-received by doctors, epilepsy foundation affiliates and researchers alike. All understood the importance of seizure diaries and everyone seemed impressed that we had taken our diary as far as we had. If anything, I came away with a sense that we're headed down the right path.
Philadelphia also turned out to be a great surprise. The downtown was clean and impressive, with lots of historic buildings, restaurants, bar, shops and more. I could easily have spent more time there. My only complaint was the cold. 30-40 degrees. For a California boy, that is cold. Brrrr.
Here are some pics I took with the not-so-fancy camera in my phone:
The show filled up a quarter of the Phili Convention Center.
Beautiful town hall was a block away from my hotel. And yes, I visited the Liberty Bell too.
If any of you live in Seattle, or close, you should try to attend the AES Shownext year. I know it's not a consumer show, but it may give you some insight into what's happening in the world of epilepsy.
Until next time...
-Eric
Just got back from the AES (American Epilepsy Society) Show in Philadelphia. I have to say, I was debating whether or not to go. But now that I'm back, I'm glad I went.
The show floor was full of interesting companies, from epilepsy programs and clinics, to all the big pharma companies, to software companies and book publishers. Most of the software focused on EEG reading software that physicians could use. There were also hundreds of research projects on display that were there for the browsing. Not being a doctor or researcher, I didn't understand half of them! Still, it was nice to see all of the action and research surrounding epilepsy. Personally, looking from the outside in, I've had a tendency to be jaded, thinking that very little was being done for those with epilepsy. But I'm here to tell you that lots of people are working on our behalf. AES definitely proved that.
My seizure diary software, EpiTrax, was well-received by doctors, epilepsy foundation affiliates and researchers alike. All understood the importance of seizure diaries and everyone seemed impressed that we had taken our diary as far as we had. If anything, I came away with a sense that we're headed down the right path.
Philadelphia also turned out to be a great surprise. The downtown was clean and impressive, with lots of historic buildings, restaurants, bar, shops and more. I could easily have spent more time there. My only complaint was the cold. 30-40 degrees. For a California boy, that is cold. Brrrr.
Here are some pics I took with the not-so-fancy camera in my phone:
The show filled up a quarter of the Phili Convention Center.
Beautiful town hall was a block away from my hotel. And yes, I visited the Liberty Bell too.
If any of you live in Seattle, or close, you should try to attend the AES Shownext year. I know it's not a consumer show, but it may give you some insight into what's happening in the world of epilepsy.
Until next time...
-Eric
Thursday, November 1, 2007
See EpiTrax Live
Some of you have asked where you can see a demo of our seizure diary, Epitrax. Right now, there are two options:
1) The easiest way to check out EpiTrax is to sign up for our live online demo. You'll see EpiTrax in action and you'll be able to ask me any questions that come to mind. I give these demos 4 times. You can sign up for EpiTrax Live here.
2) The second option is to visit us at one of the following trade shows:
- We will be at the upcoming Epilepsy Brain Storm Summit on Nov 3. We have a table there and will also be presenting on a panel called "Living with Epilepsy" at 2pm. This is our first public appearance, so it should be pretty fun.
- We will also be at the American Epilepsy Society show in early December, but we won't have a booth there. If you will be at the show, just send us an email and we can arrange a meeting.
-Eric
1) The easiest way to check out EpiTrax is to sign up for our live online demo. You'll see EpiTrax in action and you'll be able to ask me any questions that come to mind. I give these demos 4 times. You can sign up for EpiTrax Live here.
2) The second option is to visit us at one of the following trade shows:
- We will be at the upcoming Epilepsy Brain Storm Summit on Nov 3. We have a table there and will also be presenting on a panel called "Living with Epilepsy" at 2pm. This is our first public appearance, so it should be pretty fun.
- We will also be at the American Epilepsy Society show in early December, but we won't have a booth there. If you will be at the show, just send us an email and we can arrange a meeting.
-Eric
EpiTrax 1.5 is now available
Hi all:
I am excited to say that EpiTrax 1.5 is now available. The new upgrade incorporates many of your comments and feedback.
Our main focus for the upgrade was the reporting and analysis. We wanted to make the reporting features a) more powerful in terms of the information they could provide and b) easier to run. I believe we've achieved that, but you will have to be the judges.
If you've never tried EpiTrax, or if you've tried EpiTrax 1.0 and want to see what's changed, download our 30-day trial version and check it out.
Here are some screenshots of the new reports. Click on the images to see more details.
I am excited to say that EpiTrax 1.5 is now available. The new upgrade incorporates many of your comments and feedback.
Our main focus for the upgrade was the reporting and analysis. We wanted to make the reporting features a) more powerful in terms of the information they could provide and b) easier to run. I believe we've achieved that, but you will have to be the judges.
If you've never tried EpiTrax, or if you've tried EpiTrax 1.0 and want to see what's changed, download our 30-day trial version and check it out.
Here are some screenshots of the new reports. Click on the images to see more details.
Tuesday, October 30, 2007
Are we doctors?
Hey there:
Someone recently asked me whether we are doctors. The answer to that question is "no". We're concerned citizens and people with epilepsy who are just trying to help others with their seizure tracking efforts. That said, our efforts put us in contact with lots of neurologists and epileptologists who provide feedback on our software and help us figure out what sort of information we need to help you gather.
Since we are not doctors, we recommend that you discuss EpiTrax with your doctor. Maybe there is something they specifically want to know that you can capture with our software. Or, maybe they want you to share the reports from the software with them so that together you can come up with a better treatment plan.
Whatever the case, we just want to make sure you understand that EpiTrax is not a tool for supporting self-treatment - it's a tool for gaining a better understanding of your seizures so that you and your doctor can work together to find the best treatment for you.
Someone recently asked me whether we are doctors. The answer to that question is "no". We're concerned citizens and people with epilepsy who are just trying to help others with their seizure tracking efforts. That said, our efforts put us in contact with lots of neurologists and epileptologists who provide feedback on our software and help us figure out what sort of information we need to help you gather.
Since we are not doctors, we recommend that you discuss EpiTrax with your doctor. Maybe there is something they specifically want to know that you can capture with our software. Or, maybe they want you to share the reports from the software with them so that together you can come up with a better treatment plan.
Whatever the case, we just want to make sure you understand that EpiTrax is not a tool for supporting self-treatment - it's a tool for gaining a better understanding of your seizures so that you and your doctor can work together to find the best treatment for you.
Monday, October 22, 2007
Epilepsy Brainstorm Summit
If any of you readers are based in Los Angeles, here is a conference that's worth attending: the Epilepsy Brainstorm Summit. This year's summit, which happens on Nov 3-4 at the Cathedral Plaza Conference Center in downtown Los Angeles, promises to have lots of great information and speeches. Not only will epilepsy.com's editor-in-chief, Dr. Steven Schachter, be speaking, but so too will one of our State Senator's, Mark Ridley-Thomas and the chair of the national Epilepsy Foundation's board, Tony Coelho.
To register, visit: http://EpilepsyBrainStormSummit.kintera.org.
I've gone the past few years, but this year promises to be something special. If you go, let me know what you think.
To register, visit: http://EpilepsyBrainStormSummit.kintera.org.
I've gone the past few years, but this year promises to be something special. If you go, let me know what you think.
Thursday, October 11, 2007
The Power of Information
This morning NPR had a segment on the pros and cons of doing medical research on the Internet. The long and short of it was, the Internet is a great way to find information about your disease or the disease of your loved one, but if it's not vetted by an editor with medical knowledge, you need to take the information with a grain of salt. True. There is a lot of information out there, so you have to be careful. Not everything will be right.
However, what struck me as interesting in the NPR piece not necessarily that people are turning to the Internet, but rather, why people are turning to the Internet for information.
The Internet has turned the traditional world on its head. No longer are people subject only to what doctors (or stores, etc.) tell them. People now have the ability to seek information elsewhere in order to get the best medical attention, and to become their own advocates. Yes, doctors are the trained professionals, but that doesn't mean we can't talk to other people with epilepsy to gain some insight. Take, for example, anti-seizure medication. Doctors might try to start you or your loved one on a particular medication. But they, and you, often have no way of knowing if it will work well. So why not turn to the Internet, to chat room and forums to find more information about the medication, its side effects and whether it worked for others? There are plenty of good and trustworthy sources, including epilepsy.com, and the chat rooms and forums listed here.
Now, more than ever, information is power. In fact, it is not only power, it is empowering. The more information you have, the better you are able to work with your physician to find a treatment that is right for you.
This new power of and access to information is precisely the reason why we created EpiTrax. Collecting your own information in EpiTrax will provide you with factual information you can take to your doctor. Together, you can use it to create a two-way conversation with your neurologist to find the right long-term therapy for you or your loved one .
However, what struck me as interesting in the NPR piece not necessarily that people are turning to the Internet, but rather, why people are turning to the Internet for information.
The Internet has turned the traditional world on its head. No longer are people subject only to what doctors (or stores, etc.) tell them. People now have the ability to seek information elsewhere in order to get the best medical attention, and to become their own advocates. Yes, doctors are the trained professionals, but that doesn't mean we can't talk to other people with epilepsy to gain some insight. Take, for example, anti-seizure medication. Doctors might try to start you or your loved one on a particular medication. But they, and you, often have no way of knowing if it will work well. So why not turn to the Internet, to chat room and forums to find more information about the medication, its side effects and whether it worked for others? There are plenty of good and trustworthy sources, including epilepsy.com, and the chat rooms and forums listed here.
Now, more than ever, information is power. In fact, it is not only power, it is empowering. The more information you have, the better you are able to work with your physician to find a treatment that is right for you.
This new power of and access to information is precisely the reason why we created EpiTrax. Collecting your own information in EpiTrax will provide you with factual information you can take to your doctor. Together, you can use it to create a two-way conversation with your neurologist to find the right long-term therapy for you or your loved one .
Thursday, October 4, 2007
Cure or Therapy? That is the Question
Eisai Europe Limited has recently introduced a drug to treat children living with Lennox-Gastaut Syndrome, a severe form of epilepsy.
The Tokyo-based pharmaceutical company has licensed the drug Inovelon (rufinamide) which will bear great benefits for children suffering from the uncommon condition. The full article can be found here: http://www.presstv.ir/detail.aspx?id=25797§ionid=3510210
What I find so fascinating is that the title of this article is "Cure Found for Childhood Epilepsy". I understand that this is just marketing, but still, this is no "cure". To my way of thinking, this is just another anti-seizure medication to help control seizure activity.
And that raises a larger question...Is medication a cure? I suppose it can cure certain individuals, but in the larger sense of the term, I don't think so. What do you think?
The Tokyo-based pharmaceutical company has licensed the drug Inovelon (rufinamide) which will bear great benefits for children suffering from the uncommon condition. The full article can be found here: http://www.presstv.ir/detail.aspx?id=25797§ionid=3510210
What I find so fascinating is that the title of this article is "Cure Found for Childhood Epilepsy". I understand that this is just marketing, but still, this is no "cure". To my way of thinking, this is just another anti-seizure medication to help control seizure activity.
And that raises a larger question...Is medication a cure? I suppose it can cure certain individuals, but in the larger sense of the term, I don't think so. What do you think?
Thursday, August 30, 2007
Epilepsy Freedom Walk 2007
Hey all:
The Epilepsy Foundation of Greater Los Angeles is putting on their annual Epilepsy Freedom Walk benefiting those with epilepsy in LA. I went two years ago. It's a fun event and I understand it's getting even better. If you're in LA, be sure to check it out...
http://news.yahoo.com/s/prweb/20070830/bs_prweb/prweb550181_1
Hope you see those of you in Los Angeles at the walk.
-Eric
The Epilepsy Foundation of Greater Los Angeles is putting on their annual Epilepsy Freedom Walk benefiting those with epilepsy in LA. I went two years ago. It's a fun event and I understand it's getting even better. If you're in LA, be sure to check it out...
http://news.yahoo.com/s/prweb/20070830/bs_prweb/prweb550181_1
Hope you see those of you in Los Angeles at the walk.
-Eric
Why EpiTrax??
Since my diagnosis, my various neurologists have told me to track my seizures and anything that I thought might be causing those seizures. At first, being the college student I was, I went in the opposite direction. Rather than track my seizures, I tried my hardest to ignore them. Much to my detriment...
Over time, I recognized the value in tracking my seizures but could not keep it up. Everything I tried seemed cumbersome. I tried paper forms created by drug companies, paper forms I made, Excel spreadsheets I made. Nothing worked. Either they didn't capture the right information, or they didn't allow me to analyze the data easily, or they kept me from finding the information I needed when sitting in front of my doctor.
One day I decided that there had to be a better way...So, using my contacts in the technology world, I partnered with a brilliant software engineer and together we created EpiTrax. Admittedly, the software and our company are still young, but that's the fun of it. We've provided a good starting point with lots of great features for tracking and analyzing seizures. With your help, we have the opportunity to create something fantastic!
To that end, I ask for your help in making this the best software on the market. If you're trying it, let us know what you like and don't like. If you've purchased it, send any and all feedback to us.
Another way to contribute is to join this blog. Your comments will not go unnoticed. I welcome the opportunity to discuss our software, seizure tracking, recent epilepsy news, or anything else you think is important for those with epilepsy.
I look forward to hearing from you...
Over time, I recognized the value in tracking my seizures but could not keep it up. Everything I tried seemed cumbersome. I tried paper forms created by drug companies, paper forms I made, Excel spreadsheets I made. Nothing worked. Either they didn't capture the right information, or they didn't allow me to analyze the data easily, or they kept me from finding the information I needed when sitting in front of my doctor.
One day I decided that there had to be a better way...So, using my contacts in the technology world, I partnered with a brilliant software engineer and together we created EpiTrax. Admittedly, the software and our company are still young, but that's the fun of it. We've provided a good starting point with lots of great features for tracking and analyzing seizures. With your help, we have the opportunity to create something fantastic!
To that end, I ask for your help in making this the best software on the market. If you're trying it, let us know what you like and don't like. If you've purchased it, send any and all feedback to us.
Another way to contribute is to join this blog. Your comments will not go unnoticed. I welcome the opportunity to discuss our software, seizure tracking, recent epilepsy news, or anything else you think is important for those with epilepsy.
I look forward to hearing from you...
Thursday, July 12, 2007
My Seizures
So that you understand where I am coming from, let me start this blog by describing my seizures. I had my first seizure when I was about sixteen, after swim practice. My right arm had a life of its own. Being the teenager I was, I ignored it. A few months later, a new twist was added. While reading a book, the words suddenly made no sense to me. It was as if I was reading a foreign language I had never seen before.
Scared, I went to see a neurologist, who said I was having seizures. He said nothing of epilepsy. Or simple partials. Or complex partials. He prescribed Tegretol, which I have taken ever since in steadily increasing dosages. I now take 1800 mgs a day. Can you say sleepy?
Are my seizures controlled? No. The jerking in my arm has long since disappeared, thank God, but the seizures affecting my comprehension have only gotten worse. Still, I consider myself lucky. They do not affect my consciousness and they have never expanded into a fully generalized seizure. Plus, they have allowed me to carry on a relatively "normal" life, whatever that is.
Still, they affect me. I wonder each day, each minute, each conversation if I'll have a seizure. I wonder if I'll suffer embarrassment or confuse others with my inability to speak. I wonder if they'll get worse. I'm sure you can all relate.
But enough about me. This blog is meant to be informative and positive. The goal is not to look back, but to look forward. If you have ideas or thoughts about your experiences with epilepsy, or if you hear of some new and interesting research, let me know. For my part, I'll try to keep the conversation fresh and the dialog going.
Until next time....
Scared, I went to see a neurologist, who said I was having seizures. He said nothing of epilepsy. Or simple partials. Or complex partials. He prescribed Tegretol, which I have taken ever since in steadily increasing dosages. I now take 1800 mgs a day. Can you say sleepy?
Are my seizures controlled? No. The jerking in my arm has long since disappeared, thank God, but the seizures affecting my comprehension have only gotten worse. Still, I consider myself lucky. They do not affect my consciousness and they have never expanded into a fully generalized seizure. Plus, they have allowed me to carry on a relatively "normal" life, whatever that is.
Still, they affect me. I wonder each day, each minute, each conversation if I'll have a seizure. I wonder if I'll suffer embarrassment or confuse others with my inability to speak. I wonder if they'll get worse. I'm sure you can all relate.
But enough about me. This blog is meant to be informative and positive. The goal is not to look back, but to look forward. If you have ideas or thoughts about your experiences with epilepsy, or if you hear of some new and interesting research, let me know. For my part, I'll try to keep the conversation fresh and the dialog going.
Until next time....
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