2 days after Surgery. This is Video log 1 of my Journey- Learning to love life after Epilepsy. Subscribe to follow my progress and life after VNS therapy.
I have an appointment next month with my neurologist to hopefully get this device. I’ve had it with epilepsy. I’m tired of feeling angry, depressed and having a massive headache after a bad seizure passes. Nobody deserves to go through this. Leave us alone epilepsy.
I was diagnosed with seizures when I was 6 years old. I have been on every medicine out there. When I was 30 my neurologist and I decided to do a VNS stimulator. I am now 44 almost 45 and just has my 1st battery changed 2 years ago. I have been seizure free for almost 15 years now. I know it's different for everyone but it was a complete relief for me. Thank you for your information to help others out there.
Thank you so much for this video! I'm considering VNS after my seizure was labeled as "unable to be treated by medication" two days ago; though its been on my radar for a little over a year. To be honest, I'm kind of freaked out and so any information that I can get is so reassuring and helpful. You are truly changing lives and I truly appreciate it.
Thank you so much for posting! I just started researching VNS today for my 18 year old son. I was feeling discouraged that, there aren't a lot of personal experience videos.
Thanks for the video. I'm having this put in in a few weeks. I've had epilepsy since I was 14, I am 30 now. I developed it when I got a brain tumor. I had a temporal lobectomy for that so unfortunately I'm not a candidate for another brain surgery and the first for the tumor did not cure the seizures. I have tried a dozen different meds. I'm currently taking keppra 3000 a day, zonegran 600 a day, vimpat 400 a day, and klonopin every night for nocturnal seizures. I'm hopeful for the VNS since it's really my last hope. It's nice to see how it has affected others. I appreciate your video. Thanks.
I have had mine since December 23 2017 , and I have so glad I did . It has reduced the frequency and severity of seizures and I have had a huge improvement in quality of life. I THANK GOD for giving man this knowledge you will see an improvement once they find the best level for you
Dude I had to pause the vid halfway in to say this but thank you for making videos about what you're going through. I'm currently a 25 year old epileptic that hasen't been able to find a med that works so i've never been able to drive and recently my seizures have gone from 1 a month to 1 a week. So I just got my appt with a neurosurgeon today and i'm most likely getting the "Spire" VNS. But anyways man thank you.
Thanks bro for ya info I watched all ya videos like 1 month before my surgery which was last week . I have bad epilepsy from my disease I had when I was 6 So far I feel exactly the same as you a week after my surgery so like you I hope this is a success
This is a procedure I'm going to talk to my neurologist about in a few weeks. I've done a bit of research, and it seems like it may be a good way to go, since my seizures are starting to get in the way again, even with the meds. Hope you're doing well these days!!
Thank you for the video. I've had seizures for 37 yrs. I have been on disability for 12 yrs. I have juvenile Myoclonic and absence and am having a Vns put in next month. Your video helped.
6:37 i remember having that problem in 11th and 12th grade. had to become homeschooled about 3 months into the 11th grade but then finally got able to go back to school in 12th grade but still missed school like 2 days a week. but my vice principal is so sweet. since i was missing so much school, he let me pass school doing only 1/3 of homework than the other kids. i still got a several C's and D's though because i couldnt remember much after having all those seizures
Thank you for this I’ve been doing research about this because I’m on some of the same medicines and you know I wanna be able to drive again and live my life in a better way without having to worry if I don’t get enough sleep or being stressed out if that that’ll cause a seizure so I am thinking about getting this thank you
Thank you for all your videos! It definitely gave me a lot of info while coming to the decision. I had the device implanted 2 Fridays ago. They activated it on Tuesday. I’m still on a low dose of stimulus but as of now there hasn’t been any seizures
I’ve had mine for quite a few years now it’s helped a little but not much. The incision for where the device goes in is quite an inconvenience since it’s right next to my armpit and not below my clavicle so that’s annoying.
How are you doing now? I see this has been 8 years. I really hope your quality of life is great. Any seizures post vns? How many? It's been on my mind so much as no meds have been helping since Oct 2020, and I've had seizures since 14, I'm 25. I see my neuro this Monday and I'm just scared. I don't know what's changed
NEW one? Why, if you don't mind me asking? I was looking online about problems and found 2 models recalled(FDA:Class2) each of the last three yrs. I'm almost ready to try this for my complex partial seizures. Thanks, good luck.
I have Pol;ymicrogyria and was reasonably steady until my old consultant changed my medication 6 years ago and seizures been bad since,so will be getting the Vegal nerve stimulator op as last resort as meds aren't really doing much good anymore.Been doing research into it and it would be great to even be as steady as i once was and or get off or cut down meds.Have you had much improvement since this video?i'm on very high doses of Kepra,Lamictal and Clobozam 3 tgimes a day an my wife has to be there 24/7 so life is limited but if this worked would be a Godsend.
I don't have epilepsy but treatment resistant major depression. I found out about it, by looking into ECT. I'm hoping I can get approved for it but, I'm not getting my hopes up. Do you find it helps your mood at all? Do you deal with the 'Robot voice' at all? (I'm definitely not looking forward to that). If it controls my TRD then, I'll just deal with it. Hope you are doing better with the epilepsy.
i've been on both those medications too in college and i could barely function. i feel your pain. i've been on every pill under the sun and still have seizures. i occasionally have an aura, but there were times that i was walking down the hallway and went limp. so my epilepsy doctor offered me the VNS surgery or a pill that had a depression/psychosis side effect. i'm kinda nervous about it. is it a hard recovery? does the device feel weird when you breath or speak? do you still take medication?
+Melissa Gerson Hi Melissa. Recovery is easy. A little soreness in the neck for about a week but its not bad at all. You can stretch it out to recover faster. You will definitely feel the device go off if you do heavy cardio activity and when you are speaking. Your body does get used to it though and in my case, it is well worth not having seizures or being toxically medicated all the time. I am no longer taking any medication and my seizures are under control. Obviously every case is different so it may or may not work as well for you as it did me. I will say however, my academic life has drastically improved since being off the medication from night to day. Good luck!
That with anything that includes surgery you must rest take and easy dont go and go into in to the gym that you must work with your doctor. And read the book that they gave you that came Via Nova will help you alot.Yet you can use the extra magnets to help you when you travel and when you have a severe seizure you cant get your hands to the area that extra can help you out.I was diagnosed many seizures and I had I had the surgery and it has helped me out alot I used to have six to seven seizures a week and some up to three per day . This device has helped to slow down the seizure progress and with the device it may hurt from time to time but I go through and tap the device sending a small stimulation to null the pain.
I know how it feels I have seizures my self ever since I was 8 months old. The only difference is that It took me 19 years to finally get brain surgery. But sadly it didn’t work I still have them. Hopefully I get another surgery in December.
FYI new med xcopri new med that is very effective with very few side effects and if you can get it insurance approved it is great. I've had epilepsy since childhood I've been on so many med combinations. VNS has allowed me to function at much higher level with less levels
I'm on Depikote, but not the other medication. I'm on a second one (for a second type of seizure I have) but I sadly don't remember what it's called. Hahaha. I was diagnosed with Epilepsy when I was about 2.. and I've been on Depikote for about 21 years or so. The medications aren't really helping anymore, so the next step my neurologist suggested was this surgery. I'll be getting this done in a little under a week now. I'm kinda nervous, but kind of excited to get it done and over with. Hopefully this opens up more doors for me.. I can't drive, due to the seizures. So.. hopefully with this device I will be able to finally learn how to drive and lug myself around instead of waiting on people! Haha. Hopefully finding a job will be easier too! :P
Thanks! I got it done a few days ago! Still sore. Still on painkillers. I'm moving around here and there. Sleeping a lot still, which is expected. I feel so great. Kinda like a new person. Whenever I get the device turned on, I'll be asking when I can get back into the gym. I can't stand not working out! Yesterday when I took a painkiller, I went to my neighbors house right after, and since it takes a bit for the painkiller to kick in.. as soon as I walked in the front door, it almost knocked me on my butt. Haha. Had to grab on to the wall to hold myself up. Haha. Anyways! Everything went well and I'm healing up nicely! Have a good day! And thank you for this video! Honestly watching all your videos helped me with me decision!
Great! Good luck with the healing process. I would recommend doing your best just to lightly stretch out your neck so it's not so stiff and when you get back in the gym START SMALL! It will all be great!
Do you have a skype account or anything. You sound like a better person to talk to about this. I don't know anyone that really seems to be able to tell me much. Even the doctor leaves a few things out. Your epilepsy sounds a little more like mine is
Doctors do tend to leave some things out, I think more so because they have certain experience with patients but can't tell you what it's really like from a first person perspective. Everything has been working great for me. Feel free to email me at bbaker07@unm.edu if you want some really in depth info. I'd be happy to answer any of your questions. Don't have a Skype though sorry
saddlerider17 ive had epilepsy since i was 18 months old and im now almost 21 im thinking about talking to my doctor about the vns how is it working for you
I have an appointment next month with my neurologist to hopefully get this device. I’ve had it with epilepsy. I’m tired of feeling angry, depressed and having a massive headache after a bad seizure passes. Nobody deserves to go through this. Leave us alone epilepsy.
Thank you 😢❤
I was diagnosed with seizures when I was 6 years old. I have been on every medicine out there. When I was 30 my neurologist and I decided to do a VNS stimulator. I am now 44 almost 45 and just has my 1st battery changed 2 years ago. I have been seizure free for almost 15 years now. I know it's different for everyone but it was a complete relief for me. Thank you for your information to help others out there.
Thank you so much for this video! I'm considering VNS after my seizure was labeled as "unable to be treated by medication" two days ago; though its been on my radar for a little over a year. To be honest, I'm kind of freaked out and so any information that I can get is so reassuring and helpful. You are truly changing lives and I truly appreciate it.
Thank you so much for posting! I just started researching VNS today for my 18 year old son. I was feeling discouraged that, there aren't a lot of personal experience videos.
Thanks for the video. I'm having this put in in a few weeks. I've had epilepsy since I was 14, I am 30 now. I developed it when I got a brain tumor. I had a temporal lobectomy for that so unfortunately I'm not a candidate for another brain surgery and the first for the tumor did not cure the seizures. I have tried a dozen different meds. I'm currently taking keppra 3000 a day, zonegran 600 a day, vimpat 400 a day, and klonopin every night for nocturnal seizures. I'm hopeful for the VNS since it's really my last hope. It's nice to see how it has affected others. I appreciate your video. Thanks.
Thank you for your sharing your experience. May you be blessed by the Most High🙏🏼
I have had mine since December 23 2017 , and I have so glad I did . It has reduced the frequency and severity of seizures and I have had a huge improvement in quality of life. I THANK GOD for giving man this knowledge you will see an improvement once they find the best level for you
Dude I had to pause the vid halfway in to say this but thank you for making videos about what you're going through. I'm currently a 25 year old epileptic that hasen't been able to find a med that works so i've never been able to drive and recently my seizures have gone from 1 a month to 1 a week. So I just got my appt with a neurosurgeon today and i'm most likely getting the "Spire" VNS. But anyways man thank you.
Thanks bro for ya info I watched all ya videos like 1 month before my surgery which was last week . I have bad epilepsy from my disease I had when I was 6
So far I feel exactly the same as you a week after my surgery so like you I hope this is a success
Christ will bless you!!
This is a procedure I'm going to talk to my neurologist about in a few weeks. I've done a bit of research, and it seems like it may be a good way to go, since my seizures are starting to get in the way again, even with the meds. Hope you're doing well these days!!
Thank you for the video. I've had seizures for 37 yrs. I have been on disability for 12 yrs. I have juvenile Myoclonic and absence and am having a Vns put in next month. Your video helped.
How did it go? How have you been with your seizures? Our son is a candidate for one.
would love to see a 2021 update.
6:37 i remember having that problem in 11th and 12th grade. had to become homeschooled about 3 months into the 11th grade but then finally got able to go back to school in 12th grade but still missed school like 2 days a week. but my vice principal is so sweet. since i was missing so much school, he let me pass school doing only 1/3 of homework than the other kids. i still got a several C's and D's though because i couldnt remember much after having all those seizures
Thank you for this I’ve been doing research about this because I’m on some of the same medicines and you know I wanna be able to drive again and live my life in a better way without having to worry if I don’t get enough sleep or being stressed out if that that’ll cause a seizure so I am thinking about getting this thank you
Thank you for all your videos! It definitely gave me a lot of info while coming to the decision. I had the device implanted 2 Fridays ago. They activated it on Tuesday. I’m still on a low dose of stimulus but as of now there hasn’t been any seizures
How has it been with the vegas implant? Our son is a candidate and we are hoping for good results.
So how did it go? We are about to do this and just wondering about the follow up. Did it help?
Yes I really want to see a 2021 how it’s doing for you now
I’ve had mine for quite a few years now it’s helped a little but not much. The incision for where the device goes in is quite an inconvenience since it’s right next to my armpit and not below my clavicle so that’s annoying.
How are you doing now? I see this has been 8 years. I really hope your quality of life is great. Any seizures post vns? How many? It's been on my mind so much as no meds have been helping since Oct 2020, and I've had seizures since 14, I'm 25. I see my neuro this Monday and I'm just scared. I don't know what's changed
Had mine since June 2015. Going in tomorrow morning to have a new one installed.
NEW one? Why, if you don't mind me asking? I was looking online about problems and found 2 models recalled(FDA:Class2) each of the last three yrs. I'm almost ready to try this for my complex partial seizures. Thanks, good luck.
Whoever created Keppra, let’s step outside for a second, I need a word with you. 😕
I have Pol;ymicrogyria and was reasonably steady until my old consultant changed my medication 6 years ago and seizures been bad since,so will be getting the Vegal nerve stimulator op as last resort as meds aren't really doing much good anymore.Been doing research into it and it would be great to even be as steady as i once was and or get off or cut down meds.Have you had much improvement since this video?i'm on very high doses of Kepra,Lamictal and Clobozam 3 tgimes a day an my wife has to be there 24/7 so life is limited but if this worked would be a Godsend.
I got mine put n on the 12th of this month. Getting it actually turning on this week. Feeling excited to c how this help with my seizures.
Well? One yr later....worth it?
Did the vns help you i have my surgery scheduled next month?
u give alot info
I don't have epilepsy but treatment resistant major depression. I found out about it, by looking into ECT. I'm hoping I can get approved for it but, I'm not getting my hopes up. Do you find it helps your mood at all? Do you deal with the 'Robot voice' at all? (I'm definitely not looking forward to that). If it controls my TRD then, I'll just deal with it. Hope you are doing better with the epilepsy.
nice video
i've been on both those medications too in college and i could barely function. i feel your pain. i've been on every pill under the sun and still have seizures. i occasionally have an aura, but there were times that i was walking down the hallway and went limp.
so my epilepsy doctor offered me the VNS surgery or a pill that had a depression/psychosis side effect. i'm kinda nervous about it.
is it a hard recovery? does the device feel weird when you breath or speak? do you still take medication?
+Melissa Gerson Hi Melissa. Recovery is easy. A little soreness in the neck for about a week but its not bad at all. You can stretch it out to recover faster. You will definitely feel the device go off if you do heavy cardio activity and when you are speaking. Your body does get used to it though and in my case, it is well worth not having seizures or being toxically medicated all the time. I am no longer taking any medication and my seizures are under control. Obviously every case is different so it may or may not work as well for you as it did me. I will say however, my academic life has drastically improved since being off the medication from night to day. Good luck!
I just got mine in on Friday 01/08/2021,
Hey Bryan! How are you doing a year later after getting the vns? :)
In a scale from 1-10, how much did your voice change?
The one in my Uncle had to be surgically removed after a couple months as it was rejected back out of his chest/skin. He died shortly after.
How long did it take you to recover from the surgery
Looking for the video after he turned on VNS and hear about symptoms. Can’t seem to locate?
No medications help me get rid of seizures 100%, my doctor suggested such an operation to me. I'm looking for a video on this
I don't have the surgery til the end of November. I'm still kinda doing the research
That with anything that includes surgery you must rest take and easy dont go and go into in to the gym that you must work with your doctor. And read the book that they gave you that came Via Nova will help you alot.Yet you can use the extra magnets to help you when you travel and when you have a severe seizure you cant get your hands to the area that extra can help you out.I was diagnosed many seizures and I had I had the surgery and it has helped me out alot I used to have six to seven seizures a week and some up to three per day . This device has helped to slow down the seizure progress and with the device it may hurt from time to time but I go through and tap the device sending a small stimulation to null the pain.
Does a neurosurgeon do this procedure?
Keppra and Depakote didn't help me how u doing now I'm take like 7 meds
I know how it feels I have seizures my self ever since I was 8 months old. The only difference is that It took me 19 years to finally get brain surgery. But sadly it didn’t work I still have them. Hopefully I get another surgery in December.
The medical field is constantly evolving! Keep your spirits high. FIGHTING!
What’s the name of the girl you said you watch on RUclips?
FYI new med xcopri new med that is very effective with very few side effects and if you can get it insurance approved it is great. I've had epilepsy since childhood I've been on so many med combinations. VNS has allowed me to function at much higher level with less levels
hi please can you tell me after how many days it work
are you having epileptic fits now?
Thanks man we live hard lives we are strong p;eople
yah really
I'm on Depikote, but not the other medication. I'm on a second one (for a second type of seizure I have) but I sadly don't remember what it's called. Hahaha. I was diagnosed with Epilepsy when I was about 2.. and I've been on Depikote for about 21 years or so. The medications aren't really helping anymore, so the next step my neurologist suggested was this surgery. I'll be getting this done in a little under a week now. I'm kinda nervous, but kind of excited to get it done and over with. Hopefully this opens up more doors for me.. I can't drive, due to the seizures. So.. hopefully with this device I will be able to finally learn how to drive and lug myself around instead of waiting on people! Haha. Hopefully finding a job will be easier too! :P
GOOD LUCK RYAN!
Thanks! I got it done a few days ago! Still sore. Still on painkillers. I'm moving around here and there. Sleeping a lot still, which is expected. I feel so great. Kinda like a new person. Whenever I get the device turned on, I'll be asking when I can get back into the gym. I can't stand not working out! Yesterday when I took a painkiller, I went to my neighbors house right after, and since it takes a bit for the painkiller to kick in.. as soon as I walked in the front door, it almost knocked me on my butt. Haha. Had to grab on to the wall to hold myself up. Haha. Anyways! Everything went well and I'm healing up nicely! Have a good day! And thank you for this video! Honestly watching all your videos helped me with me decision!
Great! Good luck with the healing process. I would recommend doing your best just to lightly stretch out your neck so it's not so stiff and when you get back in the gym START SMALL! It will all be great!
Well of course I would start small! =) This device is a life changer! Thanks for these videos! They helped a lot! Have a good day!
I have one too.
also now have vns still sezuires
please tell your doctors name
Do you have a skype account or anything. You sound like a better person to talk to about this. I don't know anyone that really seems to be able to tell me much. Even the doctor leaves a few things out. Your epilepsy sounds a little more like mine is
Doctors do tend to leave some things out, I think more so because they have certain experience with patients but can't tell you what it's really like from a first person perspective. Everything has been working great for me. Feel free to email me at bbaker07@unm.edu if you want some really in depth info. I'd be happy to answer any of your questions. Don't have a Skype though sorry
saddlerider17 ive had epilepsy since i was 18 months old and im now almost 21 im thinking about talking to my doctor about the vns how is it working for you
I have to do surgery very scared😁
How did it go
Does VNS make you smarter or dumber?
Your dumb there’s your answer