Hi Bryan! I love your videos. I see that the last one you created was 5 yrs ago. Can you please give us an update on how your are doing? I'm sure everyone would love to hear from you! 💜
Thank you for sharing because I have very similar experiences with medication and have even had 2 brain surgeries. We are just now looking at a VNS here in a month or so. The brain surgeries were thought to have better seizure reduction but they came back after a couple months or so after both. The VNS is what we are trying now because those surgeries didn’t work. These videos have helped me think through and put my mind at ease about my decision to get the VNS.
Your videos help inspire me to chase this dream and seize my life! Just recovering from VNS surgery and looking forward to the future, to school, and the new me! Thank you!!
@@yetibigfoot7350 I have definitely come a long way from a few years ago when I got my implant. The road was not as smooth as I had hoped but I am here today. Finally regained the freedom with driving, but still struggle with a lot of the emotional aspects of Epilepsy. As soon as seizures became more controlled, I felt I ‘wasn’t allowed’ to blame my Epilepsy for my setbacks in life any longer, like not going back to school. It’s hard being able to accept and embrace that life will never be the same, that I will always have epilepsy, and that it is not my fault. Learning to adapt emotionally is my current hurdle.
@@marbell7081 I am doing great! Living life independently and seizures have been wel controlled for almost a year! It is not just the VNS I am also on Lamotrigine. In the past, however, Lamotrigine alone did not work for me. I am very grateful that this combination has been successful.
Hi, I was diagnosed with grand-mal tonic clonic epilepsy 9 months ago after my first event during my senior season of lacrosse. It caused me to miss out on my senior year of school as I was battling taking medication and getting used to the side effects while also trying to maintain all my credits to graduate. In the end I was forced to give up lacrosse because of the amount of stress it put on my school work. Just recently I had my 8 seizure in 8 months after a short beach day riding home with my girlfriend and it has turned me down this youtube and reddit rabbit hole of trying to understand epilepsy while also hearing terribly scary stories that make me never want to leave my house again. I’d just like to say that your videos really gave me hope and inspired me to start making the right choices and putting the right nutrients and ingredients in my body to live and stress and seizure free life.
Thank you for doing these videos. My son recently got a vns implant. We were hesitant to go through with the surgery but then my daughter forwarded some of your videos and said, "You gotta watch these. This guy looks just like my brother! And look what the vns has done for him.. Get him the vns." It has been interesting to watch your transformation from your first videos to this one. My son has had his for 5 months and only recently had it turned up to a therapeutic level. Already he is doing much better. In 3 months his neurologist is planning on backing him off of one of his meds. Like you, he has idiopathic generalized seizures, but also partial complex seizures. The medications wipe him out and make it very difficult for him to concentrate. He is a sophomore in college, but only taking a couple of classes at a time because of his exhaustion and brain fog. Thank you for sharing your story and giving our family some hope.
@@robinmcdonald3022 he is doing much better. He recently started LENS treatment and it has removed most of the depression, anxiety, and looping thoughts that are a byproduct of his particular brand of epilepsy. I highly recommend getting a VNS and find a provider who does LENS treatment. Our insurance has paid for both the VNS implant and the LENS treatment.
@@sheilahorton5189 I'm glad to hear he is doing well. None of us has heard from him in quite a while. Can you please explain what Lens treatment is? It goes hand and hand with VNS?
@@robinmcdonald3022 he has only had the VNS for one year. It has greatly reduced his seizures. His neurologist told us it takes several years before the VNS changes the brain chemistry. LENS treatment was an add on this year to help him with the emotional side effects of his epilepsy plus to retrain his thought patterns. He is much happier after one month of LENS and is able to converse at his pre-seizure/pre-epilepsy level. It is amazing.
Hi Bryan, my husband just had a week long EEG at the hospital and he did not have any seizures of course. All they could see is that he had generalized epileptiform on both sides of the brain. Two days after he came back home his clonic tonic seizure cluster came on. I was a bit discouraged until I found some information on VNS and found your journey. I guess I too was wondering how things have worked out for you with VNS over the years. The way you described your experience with the medications is similar to how my husband has described things. His trouble with the medications sound a bit worse though.
Bryan, I have been following your progress for at least 8 months. I have had seizures since I was 2 and I will admit. Not as bad as yours when it comes to frequency. But I do have grand mal seizures. One was so bad it literally shattered half of my face and broken my nose in one fell swoop. I knew about VNS since 98 but no doctor I had would allow me to even consider it. I gave up. Recently. october of last year my new neurologist suggested it after going through 6 different medications and no combinations worked. I was really in a slump and was literally in shock. In my mind I had thought This has to be a joke, others told me I wasnt a good candidate. well I did decide to met with the livanova person and they even said I was a great candidate for it and there is no reason they should have even denied it. I had it installed december 13th and turned on december 28th. I said go for it, even though it may affect my voice, where I am a musician that is a key thing, I was ready to try it. I have gotten to the point I was afraid to walk anywhere alone, not even live a life. In my mind I decided, I can strengthen my vocal chords to adjust to whatever they throw at me lets Do this. I am glad I went with it. I can tell that my depression I have been fighting has slowly but surely reduced and I still feel its to soon to tell about how it is doing on my seizures. sincerely, Bryan Brewer
Hi Bryan. Wow. I am encouraged to hear your positive words. Your story is one that inspires me especially being willing to have your voice affected despite your being a musician. I can tell you are very passionate about living your life to the fullest whilst considering this path. I am excited to hear that depression has reduced and am curious to know how your medication has been effected since having the device turned on. Keep up the good fight and I wish you all of the greatest wins in your journey!
I think it is too soon to really tell. My last seizure was november the 23, I usually have one a month at least. I have been on phenobarbitol, Tegretol XR and regular Tegretol, Epitol, Trileptol, and Fycompa. The Tegretol XR use to control them well but my body just become use to the medicine and lost the ability to control them in 2006.
Dear Bryan, my own personal reason for not going through the VNS surgery is a little similar to yours. I'm terrified that the electrode will be placed too close to my vocal chord and I'll hear my voice change while talking or singing. It's something that I haven't heard people in videos explain, nor if they can simply feel it go off. Also, reading that you've had epilepsy since you were 2 makes me feel not alone, I was diagnosed when I was 5. I don't know if you went through this, but I know that feeling of all your doctors telling you you may grow out of this and then one day...
I've been offered the VNS and i dont really know what i should do, I've had multiple brain operations, i have a lesion on my brain that isnt connected or something like that! i turn 16 in may. you make my days so much better, i fit every night without fail i have 9 different types of seizures, tonic clonic, drop seizures, I'm on 3 to 4 anti epileptics twice a day since i was 4 i would have 120 seizures a day, i spent 9 months in hospital once without leaving and 12/13 years later they've offered me VNS as they are unable to do anymore BRAIN OPERATIONS! please see this :) I AM THINKING ABOUT DOING MY OWN VIDEOS TO HELP PEOPLE MY AGE BUT I DONT KNOW!! YOUR VIDEOS ALWAYS HELP ME SO ID LIKE TO SAY THANK YOUU :)
YOUR WELCOME! :) it makes me very excited to hear that these videos are reaching you at this point in your life. I have discovered that this small community is vastly different within each prospective neurological condition, but we all have epilepsy and need information and most of all support. Your story touches my heart deeply as my brother was diagnosed with Epilepsy when he was 16. I will never forget that day. It seems that your Epilepsy is very complex having 9 different types of seizures; 120 a day truly sounds draining. I am happy to hear you are still fighting on through such an inspiring battle, even brain surgery. I would encourage you to really talk to your doctor regarding VNS if she thinks it can provide some possible relief. You, and your doctor would know more than anybody. The best advice I can give is to ask her as many questions as you can about it without holding back and keep up your research online. The more you know, the more capable you will be in making the right decision. Having gone through what you have, you are such a hero. Keep up the fight and take even the small victories in. This will keep you strong. Good luck with everything!
thank you so much for getting back to me, not in a million years i thought you would. yeah i am going to go and see my neurological doctors about it, there isn't much info on VNS on the internet, thats why I'm so wary wether or not i go through with the VNS. thank you so much for taking the time to get back to me, i hope your brothers okay x
I hope you did not have the implant. View my Facebook page facebook.com/MUSCabuseandcorruption/ . I know my case seems like a bad movie but it what can happen. The best of luck but it looks if I'm a year late seeing this.
also i was on Depakote for 9 years for a seizure disorder This is how Depakote affected me it caused massive weight gain, memory loss, a hand tremor a one point i stoped eating i had no appetite i was depressed. i was also on Clonidine guanfacine (mood stabilizer). then when i was 10 i was on levocarnitine as i did not have too much vitamin A in body.
Sophie Palmer-Doran, my son got a VNS implant last year and it has greatly reduced his seizures. However, his depression, anxiety and OCD were terrible. He has started LENS treatment which has made a huge difference. He is laughing, talking, and shifting out of his "loops". Maybe find a practitioner that knows how to do LENS.
Hello Bryan Baker. I hope you are still doing well and everything is controlled. I am also like many others have epilepsy but it is never controlled. I was diagnosed with epilepsy when I was 22 and it progressed to a diagnosis of intractable epilepsy. Basically like you and many others medicines don't work. But none the less I've had three options. Keep my head up. Cry in the corner. Or give up entirely. The third has never been an option and I don't cry lol. I started a specific epilepsy support group on face book since there was none named 'Epilepsy Support Group's and last may 2016 I had a right temporal lobe resection in hopes it would alleviate or get rid of the seizures all together. Worked for the summer but alas my journey wasn't over. I am going Monday august 8th for my third brain surgery but its just a intracranial monitoring ill have things in my brain and ill be awake and mobile waiting for the seizures for two weeks haha. I was wondering what kind of video software you use. I agree with you the more information out there the better it is for fellow epileptics. Also I want to thank you for your videos on the vns. I am more receptive to it now since I've seen those. Best to you my brother.
Hi Brian. Thank you for all your videos. You mentioned in this video about another video where you share more about the medication journey. I can’t seem to find it. Is it out there?
I hope you did not have the implant. View my Facebook page facebook.com/MUSCabuseandcorruption/ . I know my case seems like a bad movie but it what can happen. The best of luck but it looks if I'm a year late seeing this. This should make you tear up.
I am so excited to get my VNS implant, surgery real soon. I have had seizures for 46 years. Lots of meds and combo's . My body is resistant to a lot of meds. I cant wait to get out of this fog , and I want to get a better lifestyle. What device model did you get? Did you have trouble walking right after surgery? I am worried about coming of the meds? Does the vns help without keeping you from falling?
I hope you did not have the implant. View my Facebook page facebook.com/MUSCabuseandcorruption/ . I know my case seems like a bad movie but it what can happen. The best of luck but it looks if I'm a year late seeing this.
Bryan when you mention about the generalize epilepsy you mean Multifocal epilepsy? because after I had Temporal lobectomy of my right side in 2015 my doctor finally notice that I have Multifocal epilepsy and that's the reason why my seizures haven't gone better. so now I'm opting fir CBD oil or VNS. I hope you can answer my question
Lesiel Sierra if you want to meet with a Liva Nova employee let me know. I've worked for them for about a year and we can go over the benefits with you. Thanks.
hi bryan really enjoy your vids real informative I am thinking of getting the vns iv had 2 brain surgeries and have been on so many drugs cant remember them all nothing has really worked what does it feel like when the vns goes off do you feel a shock and does it hurt when it goes off
What does it feel like once you have the implant after you healed from surgery and the device is activated? Do you feel pain from the shock of the device. Is the hoarseness happens only during the device’s activation or is it constant?
Hi Bryan, My name’s Heather and I’m 20 years old. I have had generalized epilepsy my entire life and I am getting the VNS implant next week. I have been on countless AEDs (Keppra, Lamotrigine, Onfi, Zarontin, etc.), and none have worked to control my seizures. So, my neuros and I decided to go forward with the VNS. I’m also on Briviact and Zonigran, and both work okay right now. I’m hopeful that this procedure will help control my grand mal seizures. I must say, your videos are very inspiring :) I have a question, however. I love to exercise, live an active lifestyle. Will getting the VNS limit my ability to workout, such as weightlifting or resistance training?
Hello Brian I just did my vagus nerve last month on the 26 of November, would you have messenger so I can ask you some questions. I not having difficulty, I wanted to make a video too, but not for the moment. I live Laredo and I’m the first to have this device. They turn it on the 11 of December ,hope everything goes well.
Remember that it takes 2 to 5 years to see the maximum benefit. Do not get discouraged. My son got his VNS last March and is now really seeing a change.
Hello . I am an only I live in a three- story log house with two cats, Sock and Clay. My favorite movie is Titanic. I love historical nonfiction, and I also have a hundred or so National Geographic's. I have a boyfriend named Shawn. We have been dating for ten years .We met in 4th grade I was nine and he was ten. In 5th grade he moved. I was devastated. He was my soul mate thankfully I got his phone number. He is now a graduate of Kingston High School and I plan to marry him . I am an old fashioned girl. I where clothing that seems as though it has come from the Victoria, Edwardian and World War One era, occasionally the Fifteenth century. I have wanted to be a midwife since the age of four . Just by observing an expectant woman I can correctly diagnose any complication that arise. I will be a practicing midwife so long as I can hold an infant. i am officially in college, I am taking four corsesd Shawn, is employed . I am certified in CPR and Baby sitting When I was a baby I had a febrile seizure I stopped breathing and turned blue my mom gave me mouth to mouth and by the time the EMTS arrived I stopped seizing. in pre k I would get angry and punch any thing that was in front of me that is when it was suggested that my parents should take me to a therapist. he took one look at me and said that I was having seizures he then referred me to a neurologist. At the at the age of 5, I was diagnosed with childhood absence epilepsy but I have been seizure free since the age of thirteen. And so was taken of meds which caused massive weight gain a hand tremor and memory loss. The point is meds are good up until a point and then it becomes a pill, no pun intended. My triggers are flashing lights, the transition from the out doors to inside a classroom getting too hot and recently sleep deprivation. when i have an absent my pupils will go from normal to pin point that is the only physical sign the eye can lasts My seizures last one second and happened every minute to every minute and a half. So there are 60 seconds in a minute and 24 hours in a day then I was having seizures every 1440 minutes or 86400 seconds so in total I would have 86400 seizures per day with meds. my parents were told to treat me as a normal child and to see how fare I would develop and look at me now I have graduated high school with honors . I am in collage as you can infer I was not expected to do much of what I just mentioned The effects of my seizures is that I have Aspie like tendencies due to my epilepsy which I know is difficult to understand to put it in simple terms as a result of my seizures my brain compensated and rewired itself and so I have all of the symptoms of Aspergers but lack any sort of understanding math as a result I have no understanding of money and never really learned my basic math facts.(I am just learning them now in college which for most Aspergers people they are gifted with math abilities ) I also have orthotic issues due to my seizures I also have a processing disorder. I have low gross motor control and other motor issues as well. After my father died, it seems I have had a relapse if that is possible. I still have my absence seizure but it is not enough to put me on meds . I take omega 3 cod liver oil liquid form as I cannot swallow pills this helps decrease the too small to medicate seizures I have very small seizures that show up on the EEG as misfired neurons and the Dr. called them "flurries" so here is what my flurries are typically like I will become very spacey I can not interact with my surroundings I also felt locked in to place. I am completely aware my vision becomes like a tunnel and thing start to move or vibrate on their own an absent seizure lasts 1 second but these flurries can last 5-10 minutes.
Hi bryan , im running against time as my medications have stopped working , can you please share your email , I am considering getting VNS and I have some questions I'd like to ask. I know your busy but I'm in a pinch and an expidited response would be highly appreciated
I do. You should be able to find me at facebook using the University of New Mexico. If you can't, send me your messanger name and I will find you. Turns out there are many Bryan Brewers in the world
Hi how are you ?? Can I have your personal email please my doctor appointment is coming up by the end of the month and I need more information on the vns before I make my choice. Can anyone please help me I would truly appreciate from the bottom of my heart please. I just don't know which choice I should make. I would truly appreciate it some help.
I hope you did not have the implant. View my Facebook page facebook.com/MUSCabuseandcorruption/ . I know my case seems like a bad movie but it what can happen. The best of luck but it looks if I'm a year late seeing this.
Hi Bryan! I love your videos. I see that the last one you created was 5 yrs ago. Can you please give us an update on how your are doing? I'm sure everyone would love to hear from you! 💜
Thank you for sharing because I have very similar experiences with medication and have even had 2 brain surgeries. We are just now looking at a VNS here in a month or so. The brain surgeries were thought to have better seizure reduction but they came back after a couple months or so after both. The VNS is what we are trying now because those surgeries didn’t work. These videos have helped me think through and put my mind at ease about my decision to get the VNS.
Hi, Just checking in to see if you might of added an update video. Hope all is well👍
Your videos help inspire me to chase this dream and seize my life! Just recovering from VNS surgery and looking forward to the future, to school, and the new me!
Thank you!!
How's that going
@@yetibigfoot7350 I have definitely come a long way from a few years ago when I got my implant. The road was not as smooth as I had hoped but I am here today. Finally regained the freedom with driving, but still struggle with a lot of the emotional aspects of Epilepsy. As soon as seizures became more controlled, I felt I ‘wasn’t allowed’ to blame my Epilepsy for my setbacks in life any longer, like not going back to school. It’s hard being able to accept and embrace that life will never be the same, that I will always have epilepsy, and that it is not my fault. Learning to adapt emotionally is my current hurdle.
@@braids0325 Hi Bradie! How care you now? Is VNS controlling your seizures completely? I am considering this for my son. Thanks a lot!
@@marbell7081 I am doing great! Living life independently and seizures have been wel controlled for almost a year! It is not just the VNS I am also on Lamotrigine. In the past, however, Lamotrigine alone did not work for me. I am very grateful that this combination has been successful.
Hi, I was diagnosed with grand-mal tonic clonic epilepsy 9 months ago after my first event during my senior season of lacrosse. It caused me to miss out on my senior year of school as I was battling taking medication and getting used to the side effects while also trying to maintain all my credits to graduate. In the end I was forced to give up lacrosse because of the amount of stress it put on my school work. Just recently I had my 8 seizure in 8 months after a short beach day riding home with my girlfriend and it has turned me down this youtube and reddit rabbit hole of trying to understand epilepsy while also hearing terribly scary stories that make me never want to leave my house again. I’d just like to say that your videos really gave me hope and inspired me to start making the right choices and putting the right nutrients and ingredients in my body to live and stress and seizure free life.
Thank you for doing these videos. My son recently got a vns implant. We were hesitant to go through with the surgery but then my daughter forwarded some of your videos and said, "You gotta watch these. This guy looks just like my brother! And look what the vns has done for him.. Get him the vns." It has been interesting to watch your transformation from your first videos to this one. My son has had his for 5 months and only recently had it turned up to a therapeutic level. Already he is doing much better. In 3 months his neurologist is planning on backing him off of one of his meds. Like you, he has idiopathic generalized seizures, but also partial complex seizures. The medications wipe him out and make it very difficult for him to concentrate. He is a sophomore in college, but only taking a couple of classes at a time because of his exhaustion and brain fog. Thank you for sharing your story and giving our family some hope.
Hi Shiela! Just curious how your son is doing years later on the VNS?
@@robinmcdonald3022 he is doing much better. He recently started LENS treatment and it has removed most of the depression, anxiety, and looping thoughts that are a byproduct of his particular brand of epilepsy. I highly recommend getting a VNS and find a provider who does LENS treatment. Our insurance has paid for both the VNS implant and the LENS treatment.
@@sheilahorton5189 I'm glad to hear he is doing well. None of us has heard from him in quite a while. Can you please explain what Lens treatment is? It goes hand and hand with VNS?
@@sheilahorton5189 So is the VNS controlling his seizures? How has the VNS been working for his this past 5 yrs he's been away?
@@robinmcdonald3022 he has only had the VNS for one year. It has greatly reduced his seizures. His neurologist told us it takes several years before the VNS changes the brain chemistry. LENS treatment was an add on this year to help him with the emotional side effects of his epilepsy plus to retrain his thought patterns. He is much happier after one month of LENS and is able to converse at his pre-seizure/pre-epilepsy level. It is amazing.
Thanks for sharing your story. How vns is going for you? Do you have seizures?
Hi Bryan, my husband just had a week long EEG at the hospital and he did not have any seizures of course. All they could see is that he had generalized epileptiform on both sides of the brain. Two days after he came back home his clonic tonic seizure cluster came on. I was a bit discouraged until I found some information on VNS and found your journey. I guess I too was wondering how things have worked out for you with VNS over the years. The way you described your experience with the medications is similar to how my husband has described things. His trouble with the medications sound a bit worse though.
Bryan, I have been following your progress for at least 8 months. I have had seizures since I was 2 and I will admit. Not as bad as yours when it comes to frequency. But I do have grand mal seizures. One was so bad it literally shattered half of my face and broken my nose in one fell swoop. I knew about VNS since 98 but no doctor I had would allow me to even consider it. I gave up. Recently. october of last year my new neurologist suggested it after going through 6 different medications and no combinations worked. I was really in a slump and was literally in shock. In my mind I had thought This has to be a joke, others told me I wasnt a good candidate. well I did decide to met with the livanova person and they even said I was a great candidate for it and there is no reason they should have even denied it. I had it installed december 13th and turned on december 28th. I said go for it, even though it may affect my voice, where I am a musician that is a key thing, I was ready to try it. I have gotten to the point I was afraid to walk anywhere alone, not even live a life. In my mind I decided, I can strengthen my vocal chords to adjust to whatever they throw at me lets Do this. I am glad I went with it. I can tell that my depression I have been fighting has slowly but surely reduced and I still feel its to soon to tell about how it is doing on my seizures.
sincerely, Bryan Brewer
Hi Bryan. Wow. I am encouraged to hear your positive words. Your story is one that inspires me especially being willing to have your voice affected despite your being a musician. I can tell you are very passionate about living your life to the fullest whilst considering this path. I am excited to hear that depression has reduced and am curious to know how your medication has been effected since having the device turned on. Keep up the good fight and I wish you all of the greatest wins in your journey!
I think it is too soon to really tell. My last seizure was november the 23, I usually have one a month at least. I have been on phenobarbitol, Tegretol XR and regular Tegretol, Epitol, Trileptol, and Fycompa. The Tegretol XR use to control them well but my body just become use to the medicine and lost the ability to control them in 2006.
Dear Bryan, my own personal reason for not going through the VNS surgery is a little similar to yours. I'm terrified that the electrode will be placed too close to my vocal chord and I'll hear my voice change while talking or singing. It's something that I haven't heard people in videos explain, nor if they can simply feel it go off. Also, reading that you've had epilepsy since you were 2 makes me feel not alone, I was diagnosed when I was 5. I don't know if you went through this, but I know that feeling of all your doctors telling you you may grow out of this and then one day...
I've been offered the VNS and i dont really know what i should do, I've had multiple brain operations, i have a lesion on my brain that isnt connected or something like that! i turn 16 in may. you make my days so much better, i fit every night without fail i have 9 different types of seizures, tonic clonic, drop seizures, I'm on 3 to 4 anti epileptics twice a day since i was 4 i would have 120 seizures a day, i spent 9 months in hospital once without leaving and 12/13 years later they've offered me VNS as they are unable to do anymore BRAIN OPERATIONS! please see this :) I AM THINKING ABOUT DOING MY OWN VIDEOS TO HELP PEOPLE MY AGE BUT I DONT KNOW!! YOUR VIDEOS ALWAYS HELP ME SO ID LIKE TO SAY THANK YOUU :)
YOUR WELCOME! :) it makes me very excited to hear that these videos are reaching you at this point in your life. I have discovered that this small community is vastly different within each prospective neurological condition, but we all have epilepsy and need information and most of all support. Your story touches my heart deeply as my brother was diagnosed with Epilepsy when he was 16. I will never forget that day. It seems that your Epilepsy is very complex having 9 different types of seizures; 120 a day truly sounds draining. I am happy to hear you are still fighting on through such an inspiring battle, even brain surgery. I would encourage you to really talk to your doctor regarding VNS if she thinks it can provide some possible relief. You, and your doctor would know more than anybody. The best advice I can give is to ask her as many questions as you can about it without holding back and keep up your research online. The more you know, the more capable you will be in making the right decision. Having gone through what you have, you are such a hero. Keep up the fight and take even the small victories in. This will keep you strong. Good luck with everything!
thank you so much for getting back to me, not in a million years i thought you would. yeah i am going to go and see my neurological doctors about it, there isn't much info on VNS on the internet, thats why I'm so wary wether or not i go through with the VNS. thank you so much for taking the time to get back to me, i hope your brothers okay x
I hope you did not have the implant. View my Facebook page facebook.com/MUSCabuseandcorruption/ . I know my case seems like a bad movie but it what can happen. The best of luck but it looks if I'm a year late seeing this.
Hi Bryan… can you post an update. I see you have a lot of request for it. I hope you’re well 🙏🏽💜
also i was on Depakote for 9 years for a seizure disorder This is how Depakote affected me it caused massive weight gain, memory loss, a hand tremor a one point i stoped eating i had no appetite i was depressed. i was also on Clonidine guanfacine (mood stabilizer). then when i was 10 i was on levocarnitine as i did not have too much vitamin A in body.
Sophie, please send me an email. Bbakerlax@gmail.com I have some questions.
Sophie Palmer-Doran, my son got a VNS implant last year and it has greatly reduced his seizures. However, his depression, anxiety and OCD were terrible. He has started LENS treatment which has made a huge difference. He is laughing, talking, and shifting out of his "loops". Maybe find a practitioner that knows how to do LENS.
Hello Bryan Baker. I hope you are still doing well and everything is controlled. I am also like many others have epilepsy but it is never controlled. I was diagnosed with epilepsy when I was 22 and it progressed to a diagnosis of intractable epilepsy. Basically like you and many others medicines don't work. But none the less I've had three options. Keep my head up. Cry in the corner. Or give up entirely. The third has never been an option and I don't cry lol. I started a specific epilepsy support group on face book since there was none named 'Epilepsy Support Group's and last may 2016 I had a right temporal lobe resection in hopes it would alleviate or get rid of the seizures all together. Worked for the summer but alas my journey wasn't over. I am going Monday august 8th for my third brain surgery but its just a intracranial monitoring ill have things in my brain and ill be awake and mobile waiting for the seizures for two weeks haha. I was wondering what kind of video software you use. I agree with you the more information out there the better it is for fellow epileptics. Also I want to thank you for your videos on the vns. I am more receptive to it now since I've seen those. Best to you my brother.
tell how you now with your VNS
When you mentioned having a device in your chest, to add to this video, I got the VNS and I love my scars and my bump. Its the new me like Bryan said.
How are you currently doing with the VNS Nicole?
Hi Brian. Thank you for all your videos. You mentioned in this video about another video where you share more about the medication journey. I can’t seem to find it. Is it out there?
This video actually made me tear up, thank you for yet another insight to your life😊
Thanks Nicole!! It really means a lot
I hope you did not have the implant. View my Facebook page facebook.com/MUSCabuseandcorruption/ . I know my case seems like a bad movie but it what can happen. The best of luck but it looks if I'm a year late seeing this. This should make you tear up.
I am so excited to get my VNS implant, surgery real soon. I have had seizures for 46 years. Lots of meds and combo's . My body is resistant to a lot of meds. I cant wait to get out of this fog , and I want to get a better lifestyle. What device model did you get? Did you have trouble walking right after surgery? I am worried about coming of the meds? Does the vns help without keeping you from falling?
I hope you did not have the implant. View my Facebook page facebook.com/MUSCabuseandcorruption/ . I know my case seems like a bad movie but it what can happen. The best of luck but it looks if I'm a year late seeing this.
Please make more update videos!
Bryan when you mention about the generalize epilepsy you mean Multifocal epilepsy? because after I had Temporal lobectomy of my right side in 2015 my doctor finally notice that I have Multifocal epilepsy and that's the reason why my seizures haven't gone better. so now I'm opting fir CBD oil or VNS. I hope you can answer my question
Lesiel Sierra if you want to meet with a Liva Nova employee let me know. I've worked for them for about a year and we can go over the benefits with you. Thanks.
hi bryan really enjoy your vids real informative I am thinking of getting the vns iv had 2 brain surgeries and have been on so many drugs cant remember them all nothing has really worked what does it feel like when the vns goes off do you feel a shock and does it hurt when it goes off
I have a VNS and in my opinion it only seems to make my seizures worse
What does it feel like once you have the implant after you healed from surgery and the device is activated? Do you feel pain from the shock of the device. Is the hoarseness happens only during the device’s activation or is it constant?
Hi Bryan,
My name’s Heather and I’m 20 years old. I have had generalized epilepsy my entire life and I am getting the VNS implant next week. I have been on countless AEDs (Keppra, Lamotrigine, Onfi, Zarontin, etc.), and none have worked to control my seizures. So, my neuros and I decided to go forward with the VNS. I’m also on Briviact and Zonigran, and both work okay right now. I’m hopeful that this procedure will help control my grand mal seizures. I must say, your videos are very inspiring :) I have a question, however. I love to exercise, live an active lifestyle. Will getting the VNS limit my ability to workout, such as weightlifting or resistance training?
what happened after surgery?
Hello Brian I just did my vagus nerve last month on the 26 of November, would you have messenger so I can ask you some questions. I not having difficulty, I wanted to make a video too, but not for the moment. I live Laredo and I’m the first to have this device. They turn it on the 11 of December ,hope everything goes well.
How has it been working?
Remember that it takes 2 to 5 years to see the maximum benefit. Do not get discouraged. My son got his VNS last March and is now really seeing a change.
Bryan, are you seizure free since you had VNS? My son was just diagnosed and I am desperate. Thank you in advance.
do u have scars ??
Hello . I am an only I live in a three- story log house with two cats, Sock and Clay. My favorite movie is Titanic. I love historical nonfiction, and I also have a hundred or so National Geographic's.
I have a boyfriend named Shawn. We have been dating for ten years .We met in 4th grade I was nine and he was ten. In 5th grade he moved. I was devastated. He was my soul mate thankfully I got his phone number. He is now a graduate of Kingston High School and I plan to marry him .
I am an old fashioned girl. I where clothing that seems as though it has come from the Victoria, Edwardian and World War One era, occasionally the Fifteenth century.
I have wanted to be a midwife since the age of four . Just by observing an expectant woman I can correctly diagnose any complication that arise. I will be a practicing midwife so long as I can hold an infant.
i am officially in college, I am taking four corsesd Shawn, is employed . I am certified in CPR and Baby sitting
When I was a baby I had a febrile seizure I stopped breathing and turned blue my mom gave me mouth to mouth and by the time the EMTS arrived I stopped seizing. in pre k I would get angry and punch any thing that was in front of me that is when it was suggested that my parents should take me to a therapist. he took one look at me and said that I was having seizures he then referred me to a neurologist. At the at the age of 5, I was diagnosed with childhood absence epilepsy but I have been seizure free since the age of thirteen. And so was taken of meds which caused massive weight gain a hand tremor and memory loss. The point is meds are good up until a point and then it becomes a pill, no pun intended. My triggers are flashing lights, the transition from the out doors to inside a classroom getting too hot and recently sleep deprivation. when i have an absent my pupils will go from normal to pin point that is the only physical sign the eye can lasts My seizures last one second and happened every minute to every minute and a half. So there are 60 seconds in a minute and 24 hours in a day then I was having seizures every 1440 minutes or 86400 seconds so in total I would have 86400 seizures per day with meds. my parents were told to treat me as a normal child and to see how fare I would develop and look at me now I have graduated high school with honors . I am in collage as you can infer I was not expected to do much of what I just mentioned
The effects of my seizures is that I have Aspie like tendencies due to my epilepsy which I know is difficult to understand to put it in simple terms as a result of my seizures my brain compensated and rewired itself and so I have all of the symptoms of Aspergers but lack any sort of understanding math as a result I have no understanding of money and never really learned my basic math facts.(I am just learning them now in college which for most Aspergers people they are gifted with math abilities ) I also have orthotic issues due to my seizures I also have a processing disorder. I have low gross motor control and other motor issues as well.
After my father died, it seems I have had a relapse if that is possible. I still have my absence seizure but it is not enough to put me on meds . I take omega 3 cod liver oil liquid form as I cannot swallow pills this helps decrease the too small to medicate seizures I have very small seizures that show up on the EEG as misfired neurons and the Dr. called them "flurries" so here is what my flurries are typically like I will become very spacey I can not interact with my surroundings I also felt locked in to place. I am completely aware my vision becomes like a tunnel and thing start to move or vibrate on their own an absent seizure lasts 1 second but these flurries can last 5-10 minutes.
Hi bryan , im running against time as my medications have stopped working , can you please share your email , I am considering getting VNS and I have some questions I'd like to ask. I know your busy but I'm in a pinch and an expidited response would be highly appreciated
I sent u an email please answer.
I need eplipcy center or doctor contact.
out of curiosity, Would you happen to have a Facebook and if so would you add me so we can talk some more?
I do. You should be able to find me at facebook using the University of New Mexico. If you can't, send me your messanger name and I will find you. Turns out there are many Bryan Brewers in the world
I added you
Vagas
Hi how are you ?? Can I have your personal email please my doctor appointment is coming up by the end of the month and I need more information on the vns before I make my choice. Can anyone please help me I would truly appreciate from the bottom of my heart please. I just don't know which choice I should make. I would truly appreciate it some help.
I hope you did not have the implant. View my Facebook page facebook.com/MUSCabuseandcorruption/ . I know my case seems like a bad movie but it what can happen. The best of luck but it looks if I'm a year late seeing this.
Bryan, are you there brother?