Although I haven't posted recently, it is because I haven't had any seizures in over a year! I am so grateful for that!
I did have a recent contact from a new website called Fit2beParents. This website focuses on new parents who suffer from epilepsy. It provides information on how to get through the pregnancy and how to make it through the difficulties of raising a baby while at the same time making sure you are successfully dealing with the difficulties of taking care of oneself or one's spouse. It is very unique in that it gives advice for mothers and fathers. The site is run by two people that have epilepsy and are giving their first-hand advice. I highly recomend it: Fit2beParents.co.uk
Showing posts with label epilepsy. Show all posts
Showing posts with label epilepsy. Show all posts
Friday, January 14, 2011
Wednesday, February 18, 2009
Another Living With Epilepsy
I found another epilepsy blog today that cronicles a young child's experience with epilepsy. A pretty good read.
Monday, November 10, 2008
CURE for Epilepsy
OK, I haven't been here for a while, but really needed to point out the following. If you've been over to Federal Review to read my rants and Emeriol's reasoned discourse, then you know I'm a strong conservative and consistent supporter of Republicans. But I took extra joy in Sarah Palin's potential focus on "special needs" children as Vice President - because, after all, children with epilepsy not only have special needs in education and other matters, they have needs that vary so widely, some serious education or awareness-raisin' is needed. In any case, among my other disappointments on November 4, I was sad that Mrs. Palin would not have the opportunity to bring this issue to the debate in Washington.
But guess what. A reason for hope that the Obama Administration may even have some reason for focus directly on epilepsy itself. My lovely wife pointed out this video to me because she noticed the banner behind Mr. Obama and he roasted his new Chief of Staff Rahm Emmanuel.
For several years now, I have had this logo and link at the bottom of my page on Federal Review.
Guess who founded and runs this organization? Susan Axelrod, the wife of Barack Obama's campaign manager, David Axelrod. There's some good news. And while my 8-year old has had only one seizure since June 2007, the EEG is still not settled and others, such as Federal Review's own Emeriol, continue to fight seizures. I'm pleased that someone concerned about epilepsy research will have the new President's ear. And that's some wealth redistribution I can get behind.
This graphic from the CURE site shows how the Epilepsy Lobby (if there is one) has been very ineffective. You know you have a PR problem when a much larger number of afflicted are seeing much less comparative research investment. Perhaps that's about to change.
Crossposted on FederalReview.
But guess what. A reason for hope that the Obama Administration may even have some reason for focus directly on epilepsy itself. My lovely wife pointed out this video to me because she noticed the banner behind Mr. Obama and he roasted his new Chief of Staff Rahm Emmanuel.
For several years now, I have had this logo and link at the bottom of my page on Federal Review.
Guess who founded and runs this organization? Susan Axelrod, the wife of Barack Obama's campaign manager, David Axelrod. There's some good news. And while my 8-year old has had only one seizure since June 2007, the EEG is still not settled and others, such as Federal Review's own Emeriol, continue to fight seizures. I'm pleased that someone concerned about epilepsy research will have the new President's ear. And that's some wealth redistribution I can get behind.
This graphic from the CURE site shows how the Epilepsy Lobby (if there is one) has been very ineffective. You know you have a PR problem when a much larger number of afflicted are seeing much less comparative research investment. Perhaps that's about to change.
Crossposted on FederalReview.
Tuesday, October 28, 2008
Saturday, October 25, 2008
Tuesday, September 30, 2008
Starting into week 2!
I am now a day and a half into week 2 being home from the hospital. Unfortunately, my strength is still not up to full, so I have been taking morning or afternoon naps to compensate. Hopefully it won't take long to get back to the point where I can make it through the day without extra rest.
Friday, September 26, 2008
7 Days
I have now made it seven days since the last seizure. Great news! Hopefully the rest I am getting at home is helping.
Wednesday, September 24, 2008
Brain Mapping
I went in for an appointment with Dr. Robeson today. We did not get to the brain mapping portion of the appointment due to lack of time, so it has been re-scheduled for October.
Still no seizures. Crossing my fingers.
Still no seizures. Crossing my fingers.
Thursday, June 19, 2008
J.B. Symes, DVM. v. Epilepsy, et. al. (part 3)
Part 3.
So I finish school ok, and then get a job about midway between Charlotte and Ashville. Several months after starting work there, I began having some small-generalized seizures that merely stopped my concentration for split seconds. A MRI and EEG showed nothing that would indicate that the growth I had removed had returned. So my Dr. changed my medication from Tegretol to Lamictal. This cleared things up.
Application of Symes' theory: Continued food intolerance + new allergens = compromised immune system & seizures. An analogy used in one of his papers is that the body can handle a tremendous amount of stress from viruses, toxins, allergens, etc. But it is limited. So if your immune system is a glass of water, the food intolerances count for about 3/4 of a glass. If you start slowly adding ice cubes (representing other allergens such as pollen or dander), the water will spill over.
The Lamictal was taking care of the seizures ok - I eventually took a new job in Winston-Salem. I moved there and did not have any additional seizures... until I moved again. This time we got a dog and then a few months later moved into a house further out in the county and we got a cat to keep our dog company. I was still OK but then began having the generalized seizures that stopped my concentration for mere fractions of a second. I could still function pretty well, but my short-term memory was declining. I tried another medication - Trileptal, but this did not help. I added Keppra to my Lamictal, and this stopped the generalized seizures.
Application of Symes' theory: Food intolerances + new allergens (dog, cat, new house, different vegitation) = reduced imune system & seizures.
So I'm doing well on the Lamictal and Keppra combo for a while, and then both Christa and I start having allergy problems. Soon after that, I have a full blown tonic-clonic seizure. I then changed the dosage levels of the medication and things improved briefly. From then on, I began having seizures about every 2 - 6 months. In addition, due to the allergies, we bought a new vacuum - if I use it at least once a week, I don't suffer from classic allergy symptoms anymore.
Application of Symes' theory: Although the tonic-clonic seizures are mildly controlled, the food intolerance and allergens are still going to build up and seizures will break through.
Unable to truly control the seizures, I decide to get a VNS. Although I was able to go more than 8 months without a seizure, late this spring they came back. So I am back to trying different meds in hopes that they can stop the seizures.
Application of Symes' theory: Allergens built up during the spring, and finlly overwhelmed the system again. Changing meds may help, but won't stop the seizures from breaking through again without a change to the environment or diet.
Part 4 Tomorrow...
So I finish school ok, and then get a job about midway between Charlotte and Ashville. Several months after starting work there, I began having some small-generalized seizures that merely stopped my concentration for split seconds. A MRI and EEG showed nothing that would indicate that the growth I had removed had returned. So my Dr. changed my medication from Tegretol to Lamictal. This cleared things up.
Application of Symes' theory: Continued food intolerance + new allergens = compromised immune system & seizures. An analogy used in one of his papers is that the body can handle a tremendous amount of stress from viruses, toxins, allergens, etc. But it is limited. So if your immune system is a glass of water, the food intolerances count for about 3/4 of a glass. If you start slowly adding ice cubes (representing other allergens such as pollen or dander), the water will spill over.
The Lamictal was taking care of the seizures ok - I eventually took a new job in Winston-Salem. I moved there and did not have any additional seizures... until I moved again. This time we got a dog and then a few months later moved into a house further out in the county and we got a cat to keep our dog company. I was still OK but then began having the generalized seizures that stopped my concentration for mere fractions of a second. I could still function pretty well, but my short-term memory was declining. I tried another medication - Trileptal, but this did not help. I added Keppra to my Lamictal, and this stopped the generalized seizures.
Application of Symes' theory: Food intolerances + new allergens (dog, cat, new house, different vegitation) = reduced imune system & seizures.
So I'm doing well on the Lamictal and Keppra combo for a while, and then both Christa and I start having allergy problems. Soon after that, I have a full blown tonic-clonic seizure. I then changed the dosage levels of the medication and things improved briefly. From then on, I began having seizures about every 2 - 6 months. In addition, due to the allergies, we bought a new vacuum - if I use it at least once a week, I don't suffer from classic allergy symptoms anymore.
Application of Symes' theory: Although the tonic-clonic seizures are mildly controlled, the food intolerance and allergens are still going to build up and seizures will break through.
Unable to truly control the seizures, I decide to get a VNS. Although I was able to go more than 8 months without a seizure, late this spring they came back. So I am back to trying different meds in hopes that they can stop the seizures.
Application of Symes' theory: Allergens built up during the spring, and finlly overwhelmed the system again. Changing meds may help, but won't stop the seizures from breaking through again without a change to the environment or diet.
Part 4 Tomorrow...
Wednesday, June 18, 2008
J.B. Symes, DVM. v. Epilepsy, et. al. (part 2)
This is the beginning of an attempt to match up my seizure symptoms to the theories of J.B. Symes, DVM with regards to epilepsy. I am using the simplified theory, plus various supporting material from his various texts or links.
My first seizures occurred when I was very young - they were diagnosed as being febrile seizures - ones caused by high fever.
The next time I had a seizure I was twelve. It was a tonic-clonic seizure that happened in the middle of the day on a hot afternoon on the back porch of a friend's house. Doctors were unable to determine a cause... but my father has suggested that it could be due to a bicycle accident where I crashed and banged my head earlier that year. Head trauma is definitely a known cause of epilepsy.
If one were to apply Symes' theory to the onset of seizures, the diagnosis might go like this: Since birth I had slowly built up a level of toxins and allergens from wheat gluten and milk. After moving to south Georgia, additional airborne allergens may have accumulated in my system to the point where my immune system could no longer tolerate the allergens and caused a seizure. Perhaps the specific allergen was dog dander - my friend had two dogs.
I had several more seizures after the first one and was then put on a AED - pehnobarbitol - which reduced my seizures tremendously, but the mind-numbing side effects were quite bad. After several years in Georgia, my family moved to North Carolina. Soon after moving, I began having more seizures. My Dr. had me switch medications which reduced my seizures long enough so that I was able to get a driver's licence and successfully complete high-school.
Application of Symes' theory: Moving to a new location introduced multiple new allergens (dog, cat, construction dust, different trees and plants) to the body, which, when added to the food intolerance, overwhelmed the immune system and allow seizures to break through.
After high-school I moved to Boone, to attend university at Appalachian State (yes, the small school that beat Michigan). Not long after attending, I began to have seizures again. Possible causes - social stresses, lack of sleep, ???. In any case, with the help of friends, family, and gracious professors, I managed to make it through freshman year.
Application of Symes' theory: New allergens + food intolerance = breakthrough seizures.
Back home for the summer - I tried every available AED on the market at that time - nothing worked. So I had an MRI done. It showed that I had a tumor-like growth in my head. My neurologist said that this was most likely the cause of the seizures and that it should be removed. I had my skull sawed open and the majority of the growth was extracted - some was unable to be removed as it was deeper/entwined in the brain. After having the operation, my medication (Tegretol) was able to control my seizures again.
Here is where it gets a bit more difficult to apply the theories. If the cause of the seizures was the growth, would that preclude the theory of the food intolerance plus allergens? Perhaps not. Symes' cites research showing that reduced immune systems can have an impact on malignant growths and cell embedded viruses. Or more likely, the healthy immune system was able to handle the extra stress from the growth in my early years, but as my immune system continued to be compromised by the food and allergens, it simply couldn't handle the stress any longer.
Tomorrow I will continue the analysis.
My first seizures occurred when I was very young - they were diagnosed as being febrile seizures - ones caused by high fever.
The next time I had a seizure I was twelve. It was a tonic-clonic seizure that happened in the middle of the day on a hot afternoon on the back porch of a friend's house. Doctors were unable to determine a cause... but my father has suggested that it could be due to a bicycle accident where I crashed and banged my head earlier that year. Head trauma is definitely a known cause of epilepsy.
If one were to apply Symes' theory to the onset of seizures, the diagnosis might go like this: Since birth I had slowly built up a level of toxins and allergens from wheat gluten and milk. After moving to south Georgia, additional airborne allergens may have accumulated in my system to the point where my immune system could no longer tolerate the allergens and caused a seizure. Perhaps the specific allergen was dog dander - my friend had two dogs.
I had several more seizures after the first one and was then put on a AED - pehnobarbitol - which reduced my seizures tremendously, but the mind-numbing side effects were quite bad. After several years in Georgia, my family moved to North Carolina. Soon after moving, I began having more seizures. My Dr. had me switch medications which reduced my seizures long enough so that I was able to get a driver's licence and successfully complete high-school.
Application of Symes' theory: Moving to a new location introduced multiple new allergens (dog, cat, construction dust, different trees and plants) to the body, which, when added to the food intolerance, overwhelmed the immune system and allow seizures to break through.
After high-school I moved to Boone, to attend university at Appalachian State (yes, the small school that beat Michigan). Not long after attending, I began to have seizures again. Possible causes - social stresses, lack of sleep, ???. In any case, with the help of friends, family, and gracious professors, I managed to make it through freshman year.
Application of Symes' theory: New allergens + food intolerance = breakthrough seizures.
Back home for the summer - I tried every available AED on the market at that time - nothing worked. So I had an MRI done. It showed that I had a tumor-like growth in my head. My neurologist said that this was most likely the cause of the seizures and that it should be removed. I had my skull sawed open and the majority of the growth was extracted - some was unable to be removed as it was deeper/entwined in the brain. After having the operation, my medication (Tegretol) was able to control my seizures again.
Here is where it gets a bit more difficult to apply the theories. If the cause of the seizures was the growth, would that preclude the theory of the food intolerance plus allergens? Perhaps not. Symes' cites research showing that reduced immune systems can have an impact on malignant growths and cell embedded viruses. Or more likely, the healthy immune system was able to handle the extra stress from the growth in my early years, but as my immune system continued to be compromised by the food and allergens, it simply couldn't handle the stress any longer.
Tomorrow I will continue the analysis.
Tuesday, June 17, 2008
J.B. Symes, DVM. v. Epilepsy, et. al. (part 1)
J.B. Symes, DVM (aka DogTorJ), sent me a link to his website where he provides the details to his research into food intolerance and how they affect animals and humans. His examination and research on the topic is immense. I encourage anyone interested to check it out on his website.
For the purpose of the next few posts, I am going to simplify Symes' massive thesis into one brief sentence: Food intolerance and allergens damage cells and reduce the effectiveness of immune systems to deal with tissue bound viruses and cell mutations.
So how does that apply to epilepsy? Epilepsy is not a disease, but a condition where a person experiences re-occurring seizures. Seizures themselves are not a disease, but a response by the body to some stress. The re-occurring stress to the body/brain is what "causes" epilepsy.
The most common way that doctors combat seizures is simply to use drugs which inhibit the bodily response to the stress - hence the mind-numbing side effect of many of the drugs. In cases where the stressor is a tumor or brain damage, one way to stop the repeated stress on the brain is to surgically remove the offending tumor or brain area. In cases where the doctors cannot determine from where the seizure-causing stress is emanating, they call it Idiopathic Epilepsy.
Now, consider that doctors are frequently faced with having to treat Idiopathic Epilepsy with some selection of the available anti-epileptic-drugs (AEDs). If you read the white-papers on nearly all of these medications, one thing stands out: they all say that the doctors/manufactures are not clear on the details of how the medication helps stop seizures. Wow... talk about a tough job; trying to treat some unknown cause with unknown solutions!
Here is where Symes research comes in. He painstakingly pieces together historical and medical research to come up with a comprehensive theory on what the stressor is that causes a number of conditions, including idiopathic epilepsy. (It is like M. Night. Shyamalan's "Sixth Sense" when at the end of the movie is all becomes clear and you realize that the protagonist is a ghost.)
What I am going to do over the next few posts is apply theories laid out by Symes to my own medical history and see if his theories match my symptoms/seizures. To be clear, I am applying his theories - this is not a diagnosis by Symes.
For the purpose of the next few posts, I am going to simplify Symes' massive thesis into one brief sentence: Food intolerance and allergens damage cells and reduce the effectiveness of immune systems to deal with tissue bound viruses and cell mutations.
So how does that apply to epilepsy? Epilepsy is not a disease, but a condition where a person experiences re-occurring seizures. Seizures themselves are not a disease, but a response by the body to some stress. The re-occurring stress to the body/brain is what "causes" epilepsy.
The most common way that doctors combat seizures is simply to use drugs which inhibit the bodily response to the stress - hence the mind-numbing side effect of many of the drugs. In cases where the stressor is a tumor or brain damage, one way to stop the repeated stress on the brain is to surgically remove the offending tumor or brain area. In cases where the doctors cannot determine from where the seizure-causing stress is emanating, they call it Idiopathic Epilepsy.
Now, consider that doctors are frequently faced with having to treat Idiopathic Epilepsy with some selection of the available anti-epileptic-drugs (AEDs). If you read the white-papers on nearly all of these medications, one thing stands out: they all say that the doctors/manufactures are not clear on the details of how the medication helps stop seizures. Wow... talk about a tough job; trying to treat some unknown cause with unknown solutions!
Here is where Symes research comes in. He painstakingly pieces together historical and medical research to come up with a comprehensive theory on what the stressor is that causes a number of conditions, including idiopathic epilepsy. (It is like M. Night. Shyamalan's "Sixth Sense" when at the end of the movie is all becomes clear and you realize that the protagonist is a ghost.)
What I am going to do over the next few posts is apply theories laid out by Symes to my own medical history and see if his theories match my symptoms/seizures. To be clear, I am applying his theories - this is not a diagnosis by Symes.
Monday, June 16, 2008
No seizures in 13 days...
Great news, I have made it a whole 13 days now without any seizures! The addition of the Depakote may be the trick. Hard to say as I also had my VNS settings adjusted. We shall see how it goes...
(I added one of Blogger's new features - a poll to see what percentage of the readers have epilepsy. Please participate. I have also moved the subscribe buttons to the top. Feel free to get this in your reader or email.)
(I added one of Blogger's new features - a poll to see what percentage of the readers have epilepsy. Please participate. I have also moved the subscribe buttons to the top. Feel free to get this in your reader or email.)
Tuesday, June 03, 2008
New Drugs
I visited Dr. Dean today. She showed Christa and I a detailed analysis of the EEG report. It appears that my brain-wave patters have changed some since the last time I had an EEG. Some noticeable things were that the flashing lights produced some seizure activity in certain HZ ranges (no more Pokemon Videos for me!) I have not had seizure activity during this part of the test before. Another interesting development was that there are some intense sections of Polly-Spike-Waves (bad seizure activity) during certain sleep portions. Doc says that the seizures I am having are related to sleep deprivation caused by my mind not fully entering certain stages of sleep - thereby increasing the Polly-Spike-Wave activity even during awake and sleep.
So... she has recommended that I try adding Depakote ER to my drug regimen and remove Lamictal. I plan to start that this week. It will take several more weeks before I have made the transition. I so hope that this will work!
So... she has recommended that I try adding Depakote ER to my drug regimen and remove Lamictal. I plan to start that this week. It will take several more weeks before I have made the transition. I so hope that this will work!
Getting Old Quick
Another seizure this morning. Not so fun. At least I did not bang any body parts too hard. I'll be going back to see Dr. Dean later today. Maybe she will have some other ideas on treatments. Will keep you all updated.
Wednesday, May 28, 2008
Yet another @#$% Seizure
I stayed out of work today because I was tired from my seizure yesterday. Good thing too. I was at my parents house and had a tonic-clonic seizure while laying on their couch. Didn't get hurt though, so that was good. Christa called the Dr. and I will be going to get an E.E.G. tomorrow morning.
Tuesday, May 27, 2008
Yet Another Seizure
Scott had a tonic-clonic seizure at approx. 5:30 this evening while we were driving home from work. He did stop breathing for a moment. Unfortunately, I could not get to the magnet in time to swipe his VNS. The seat belt burned his shoulder a bit but he does not appear to have any other injuries. (Tomorrow may be a bit more telling as I imagine he will be quite sore from the seat belt.) Scott is a bit tired and complained of being hot and having a headache afterwards. He is resting comfortably now.
We're not sure if the headache or the heat attributed to Scott's seizure. But we'll keep a check on these conditions just in case. I'll continue to keep everyone updated.
Thanks again for your thoughts and prayers,
Christa
We're not sure if the headache or the heat attributed to Scott's seizure. But we'll keep a check on these conditions just in case. I'll continue to keep everyone updated.
Thanks again for your thoughts and prayers,
Christa
Thursday, March 27, 2008
Kids Speak Up! on Epilepsy
From the Epilepsy Foundation:
50 Scholarships Awarded for Kids Speak Up! 2008
Kids Speak Up! is a national conference for youth leaders with epilepsy. It provides 7-16 year olds with a unique opportunity to educate elected officials and staff about the disease. It’s also the first chance for many participants to speak out and meet other youth with epilepsy.
Chris Ames, a 10-year-old participant, was typical of many at last year’s event. He strode confidently to the stage on the first night of the conference and said, “I’m not ashamed to have epilepsy. I don’t care what people say; I just keep going. I’m a one-man army!”
Fifty families will receive scholarships to attend Kids Speak Up! 2008. Scholarships provide funding for one parent and one child’s travel, lodging and other expenses. They are sponsored through an educational grant from Abbott Laboratories.
Kids Speak Up! will be held March 30 - April 1, 2008 in Washington, DC.
Please contact Joseph LaMountain at jlamountain@efa.org if you have any questions regarding the event.
Tuesday, March 04, 2008
Three Cups of Tea
Very cool article. Super brief summary. Guy's sister dies from epilepsy. He decides to honor her by taking her necklace to the top of K2. Nearly dies. Saved by some locals. Inspired to build schools for children. The article is great. I'm planning on reading his book: Three Cups of Tea
Monday, March 03, 2008
Over Six Months
It has been over six months now since my last seizure. A very nice feeling indeed... Now, if I can just make it... say... 50 more years. Wish me luck!
Thursday, February 28, 2008
UCB & Epilepsy Advocate Scholarship
UCB and EpilepsyAdvocate have a scholarship program as well. Fortunately, this one has a deadline of May 1. If you are interested, check out their scholarship page.
The Epilepsy Advocate website has a lot of other great information on epilepsy as well.
Kudos to UCB for their research in epilepsy medications and their support for people living with epilepsy.
The Epilepsy Advocate website has a lot of other great information on epilepsy as well.
Kudos to UCB for their research in epilepsy medications and their support for people living with epilepsy.
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