Thank you so much for posting this. I got the VNS about as month a half ago. Still getting used to it and waiting for it to work. It's so great you posted your story :D
i also have it...was diagnosed with complex partial epilepsy. and by coincidence, a guy named alex called me a bitch and told me i had 2 get counseling...even told me i was a fucking crybaby! what a goddamned prick!!!
Hey Alex, thanks so much for posting this-I've just read up on VNS therapy,& am almost definitely going to go through with the procedure.I was a little bit nervous about what it might do to my voice, but hearing what it does to yours seems pretty mild. I could live with that. (Plus, I hear it can go away for some people.) I've never been diagnosed with the big "e", but I have "seizure disorder"-and I'm really tired of taking six and a half pills a day to control that. Hoping that VNS will help.
Alex, my wife Lisa has had the VNS implant since 2006, we are still ramping up the stimulation very slowly.Lisa's voice also changes during stimulation but this has got better over time.Lisa epilepsy is very severe though with frequent seizure activity every 3-4 days.We live in England (uk) and attend hospital in London.Lisa has tired all AED's available and had limited surgery back in 1993 which didn't help.Like you we remain positive & try not to let epilepsy get us down.best wishes Paul
My daughter has the VNS and is on her 2nd one, she has had this one about a year now. Her seizures went from 80-120 each day to less than 5 a day and some days none at all. My daughter cannot and has never been able to talk, but I know many others who have the VNS and they have been taught to tape the magnet over the VNS device if they want to disable it temporarily for public speaking or singing in choir etc... talk to your doc about that, it does not have to be on all the time.
Keep your positive attitude. My name is Bob, I'm 39 and I to have a VNS Stimulator. I had extreme problems with my voice for the first several years. I've had my VNS for 11 years now, I was one of the first in the US. I actually lost my voice. You sound good pal.
The most important thing with epilepsy is to keep your positive attitude. I was pushed in high school 27 years ago and thats how my seizures started. I'm undergoing Temporal Lobe Surgery in May 2008 here in PA.
Good luck with your medication but after 10 years of medications, I don't trust the prescriptions drugs any more, therefore, I'm hoping and praying for brain surgery.
thankx for posting this. I have epilepsy wich includes now 3 differant types of seizures. Granmal,petitemal, and a new kind that my doctor has yet to give a confirmed diagnosis on because more tests are needed. I also live with a severe form of Tourett'es syndrome. these conditions worsen with lack of sleep and stress. If I get too stressed i tic untill i fall into a seizure because my tics basically collaps in them selves and well..it's too much to explain here.
Thanks for posting this. I'm playing a man who has epilepsy, and I need to study this to try and make it as real as possible. I think anything short of that would be disrespectful. You mentioned not being able to talk when you knew a seizure was coming. Is this unusual? I'm trying to figure out if he could talk when a seizure is building.
Alex I understand. I have had a few seizures over the last two years.When I was fourteen I fell twenty five feet off a ski lift and two months later I was doing some homework and sudenly I lost control of my body and fell of my couch and that was the begining of my epilipsy. I have had twelve grandma seizures over the years but the medicins that work have extreme sideafects and make me drunk and high.I have tried all the medicines so im going to try vns to see if that will stop the seizures.
I am 30 yrs old right now, and I got my first seizure in the year of 1996. I got a brain tumor while I was born, but noone knows. Until year of 1980 which means I was 4 yrs old thats the time I had my brain surgery. After my surgery everythings goes fine but 16 yrs old thats the first time I had my seizure, it mades me feel so unhappy. Its been 11 yrs now my seizure still could not under control, I have seen through lots of specialist but no use.
Good luck with your medication but after 10 years of medications, I don't trust the prescriptions drugs any more, therefore, I'm hoping and praying for brain surgery.
Just like Alcoholics Anonymous, why isn't the Epilepsy Foundation available any where in USA, except designate areas? Who finances the EFA? Besides dispensing redudant self-serving brochures, how, what, where and when did the EFA helped any victim of Epilepsy since it ever came to happen around? I wonder, if the EFA have any idea that victims of seizures are losing every thing they have ever earned for persistent seizures? WHERE'S THE HELP?
Folks, I thought I was alone but thanks for your confirmation that our medications may be causing us to have HEART ARRHYTHMIA. I'm still getting VERY suspicious of my medications. Are they helping or hurting? Like you see on MySeizures videos, I'm wondering WHY I'm beating my chest so hard before I'm totally knocked out with seizures? It seems, I'm having CARDIAC ARRHYTHMIA- A DISTURBANCE IN THE HEART'S ELECTRICAL CONDITION. SEIZURES ON SEIZURES, is my medication causing my CARDIAC ARRHYTHMIA?
Luck you, Mine's worst than yours, SEIZURES. I got them from working on Wireless Network Products, High Frequency Radios for over 25 years. Check my siezures out on video in the internet,,,
I have had the VNS for years, though I had not the kind of epilepsy(no auras)you use, so it`S not from use and since I have the old version it`s also ugly/big.anyway good video.
I have had a VNS device for epilepsy for about 6 months. They still are working it up slowly to its full settings. My body has handled it well, but I have excellent neurologists and neurosurgeons here. I am only beginning to feel a difference in my seizures, so don't expect an instant or total "cure" (even my neurologist gave the estimates that approximately 33% of patients would have no improvement at all, 33% would have some improvement, and 33% would have very good improvement).
About dancing..one time at a dance club..the strobe lights turned on and well.. I was in a trance.. I couldn't move lol. Stobe light give me strange siezures. I have diffrent kinds also.. petit and grandmal. And I may ask about the device ..I take dilantin to control mine.
thanks for sharing your story. my daughter has had epilepsy since the day she was born. and she has tonic clonic seizures. i'm surprised they did that surgery on you with petit seizures. does the vns work all the time? thanks for the info!
My older brother has grand mal seizures often. Its scary for me cause I hate seeing him like that. The bad thing about my brother is that he moved out. And he does not take his Meds on time and the Doc says the next one he has can kill him. So I'm always worrying about him.
Hey babe. I think it's kool of you to share your problems and views and stuff, it will probably help people and stuff :). I'm really proud of you hunni <3.
Thank you so much for posting this. I got the VNS about as month a half ago. Still getting used to it and waiting for it to work. It's so great you posted your story :D
secretagentmandy 1 year ago
i also have it...was diagnosed with complex partial epilepsy. and by coincidence, a guy named alex called me a bitch and told me i had 2 get counseling...even told me i was a fucking crybaby! what a goddamned prick!!!
madkittyjoey70 2 years ago
Hey Alex, thanks so much for posting this-I've just read up on VNS therapy,& am almost definitely going to go through with the procedure.I was a little bit nervous about what it might do to my voice, but hearing what it does to yours seems pretty mild. I could live with that. (Plus, I hear it can go away for some people.) I've never been diagnosed with the big "e", but I have "seizure disorder"-and I'm really tired of taking six and a half pills a day to control that. Hoping that VNS will help.
iandjones942 2 years ago
Hi Alex my name is Colm im from Ireland.
Im 27 and im going to get the vns implant can i ask has it improved your life and has it limited your seizures thanks man
thecamboy 2 years ago
Alex, my wife Lisa has had the VNS implant since 2006, we are still ramping up the stimulation very slowly.Lisa's voice also changes during stimulation but this has got better over time.Lisa epilepsy is very severe though with frequent seizure activity every 3-4 days.We live in England (uk) and attend hospital in London.Lisa has tired all AED's available and had limited surgery back in 1993 which didn't help.Like you we remain positive & try not to let epilepsy get us down.best wishes Paul
ANTONY050772 3 years ago
Hey Alex,
My daughter has the VNS and is on her 2nd one, she has had this one about a year now. Her seizures went from 80-120 each day to less than 5 a day and some days none at all. My daughter cannot and has never been able to talk, but I know many others who have the VNS and they have been taught to tape the magnet over the VNS device if they want to disable it temporarily for public speaking or singing in choir etc... talk to your doc about that, it does not have to be on all the time.
Zolwena 3 years ago
Hey man, you're really brave to say that. I hope you continue to be able to handle everything. Thank you for posting this!
ahaili 3 years ago
Alex,
Keep your positive attitude. My name is Bob, I'm 39 and I to have a VNS Stimulator. I had extreme problems with my voice for the first several years. I've had my VNS for 11 years now, I was one of the first in the US. I actually lost my voice. You sound good pal.
The most important thing with epilepsy is to keep your positive attitude. I was pushed in high school 27 years ago and thats how my seizures started. I'm undergoing Temporal Lobe Surgery in May 2008 here in PA.
bobfolgerjr 4 years ago
Now I remember you! :)
Merry Christmas!
Sending love & smiles from afar!
(((Hugs))) to you & yours...
Paula
CagedSongBird 4 years ago
Good luck with your medication but after 10 years of medications, I don't trust the prescriptions drugs any more, therefore, I'm hoping and praying for brain surgery.
Wishing you all the best.
MySeizures 4 years ago
thankx for posting this. I have epilepsy wich includes now 3 differant types of seizures. Granmal,petitemal, and a new kind that my doctor has yet to give a confirmed diagnosis on because more tests are needed. I also live with a severe form of Tourett'es syndrome. these conditions worsen with lack of sleep and stress. If I get too stressed i tic untill i fall into a seizure because my tics basically collaps in them selves and well..it's too much to explain here.
LadyAngelaGray 4 years ago
Thanks for posting this. I'm playing a man who has epilepsy, and I need to study this to try and make it as real as possible. I think anything short of that would be disrespectful. You mentioned not being able to talk when you knew a seizure was coming. Is this unusual? I'm trying to figure out if he could talk when a seizure is building.
JSaltus 4 years ago
Alex I understand. I have had a few seizures over the last two years.When I was fourteen I fell twenty five feet off a ski lift and two months later I was doing some homework and sudenly I lost control of my body and fell of my couch and that was the begining of my epilipsy. I have had twelve grandma seizures over the years but the medicins that work have extreme sideafects and make me drunk and high.I have tried all the medicines so im going to try vns to see if that will stop the seizures.
WSM119 4 years ago
Alex:
Hey man I have a seizure too, how?
I am 30 yrs old right now, and I got my first seizure in the year of 1996. I got a brain tumor while I was born, but noone knows. Until year of 1980 which means I was 4 yrs old thats the time I had my brain surgery. After my surgery everythings goes fine but 16 yrs old thats the first time I had my seizure, it mades me feel so unhappy. Its been 11 yrs now my seizure still could not under control, I have seen through lots of specialist but no use.
akiralee9669m 4 years ago
Good luck with your medication but after 10 years of medications, I don't trust the prescriptions drugs any more, therefore, I'm hoping and praying for brain surgery.
Wishing you all the best.
MySeizures 4 years ago
Ask your Senator,
Just like Alcoholics Anonymous, why isn't the Epilepsy Foundation available any where in USA, except designate areas? Who finances the EFA? Besides dispensing redudant self-serving brochures, how, what, where and when did the EFA helped any victim of Epilepsy since it ever came to happen around? I wonder, if the EFA have any idea that victims of seizures are losing every thing they have ever earned for persistent seizures? WHERE'S THE HELP?
MySeizures 4 years ago
Folks, I thought I was alone but thanks for your confirmation that our medications may be causing us to have HEART ARRHYTHMIA. I'm still getting VERY suspicious of my medications. Are they helping or hurting? Like you see on MySeizures videos, I'm wondering WHY I'm beating my chest so hard before I'm totally knocked out with seizures? It seems, I'm having CARDIAC ARRHYTHMIA- A DISTURBANCE IN THE HEART'S ELECTRICAL CONDITION. SEIZURES ON SEIZURES, is my medication causing my CARDIAC ARRHYTHMIA?
MySeizures 4 years ago
i got epilepsy aswell
mattsyeovil 4 years ago
i have epilepsy too...thanks for sharing =)
mrsbrisby 4 years ago
*huggles*
jescapunk 4 years ago
Luck you, Mine's worst than yours, SEIZURES. I got them from working on Wireless Network Products, High Frequency Radios for over 25 years. Check my siezures out on video in the internet,,,
MySeizures 4 years ago
I have had the VNS for years, though I had not the kind of epilepsy(no auras)you use, so it`S not from use and since I have the old version it`s also ugly/big.anyway good video.
luxretia 4 years ago
thank you for sharing. it is very much appreciated.
yettatuti 4 years ago
I have had a VNS device for epilepsy for about 6 months. They still are working it up slowly to its full settings. My body has handled it well, but I have excellent neurologists and neurosurgeons here. I am only beginning to feel a difference in my seizures, so don't expect an instant or total "cure" (even my neurologist gave the estimates that approximately 33% of patients would have no improvement at all, 33% would have some improvement, and 33% would have very good improvement).
Mindraker1 4 years ago
About dancing..one time at a dance club..the strobe lights turned on and well.. I was in a trance.. I couldn't move lol. Stobe light give me strange siezures. I have diffrent kinds also.. petit and grandmal. And I may ask about the device ..I take dilantin to control mine.
setfree2day 4 years ago
I was Born with epilepsy 39 yrs ago and hey Im still standing :) Its good to talk about it so let it out im listenin
SagitarianRicky 4 years ago
well u've got a lot of courage to share ur problems and thas kool
ur just awesome
EXCUSEZ7MOI 4 years ago
i hope sooner or later, you'll get better or you'll outgrow it...
jrazo 5 years ago
thanks for sharing your story. my daughter has had epilepsy since the day she was born. and she has tonic clonic seizures. i'm surprised they did that surgery on you with petit seizures. does the vns work all the time? thanks for the info!
suesue06 5 years ago
hey alex, thanks for sharing your problems and stuff,n i think its cute! hehe..
lov ya
buttercup26 5 years ago
My older brother has grand mal seizures often. Its scary for me cause I hate seeing him like that. The bad thing about my brother is that he moved out. And he does not take his Meds on time and the Doc says the next one he has can kill him. So I'm always worrying about him.
spazyk 5 years ago
I have gran mal too
SagitarianRicky 4 years ago
Cool video dude
ItalianLoco 5 years ago
Hey babe. I think it's kool of you to share your problems and views and stuff, it will probably help people and stuff :). I'm really proud of you hunni <3.
yours truly;
Dawn xoxo <3
p.s. - <3 you alex
kissmine17 5 years ago