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, 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.
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.
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 $$$ placed in the right hands it would probably pass the "stringent" US FDA testing standards. Now I just need some clever marketing strategy and a nifty name... how about a little blue sugar pill called Vactium. Take two of these each day while spending most of your day on the beach or sleeping and it will reduce your seizure activities by 50 percent or more!
Enough fun... Seriously, reducing stress in your life can reduce the number of seizures you have. This definitly works for me. When combining low mental stress, a VNS, and a few AEDs, I was able to eliminate them most days. A very good thing. I suspect that getting back to work and "normal" life will increase the number I have... However, maybe I should take up Yoga or some sort of meditation exercises to reduce stress during the week. Anyone know of any good books or websites?
I can only assume that going on vacation cures seizures. Sure, it is not a highly accurate scientific study, but with enough $$$ 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!
Thursday, July 20, 2006
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 Fark.com. 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
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
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
Drugs
Phenobarbitol, Keppra, Lamictal
Depakote, Dilantin, Trileptal
..Lyrica, Neurontin
..Valporic Acid
Zonegran, Topamax, and Gabitril
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!
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
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!
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!
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...
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!
Wednesday, July 05, 2006
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
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.
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