Vagus Nerve Stimulator - How the magnets work
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- Опубликовано: 15 янв 2015
- 5 months after surgery. How this has changed my life. I describe how the magnets are used and how the system has helped me. Subscribe to keep up with my progress. Health, fitness, recipe and dieting tips and much more to come. Join me on my journey through living an exciting and fun filled life with Epilepsy. MORE VIDEOS TO COME! SUBSCRIBE!
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I have had the vns for six years and it has changed my life. I'm very blessed to have this stimulator.
God bless you man. I've had temporal lobe absence seizures since I was 15, I'm now 38 and after 5 different medications (I also still take Keppra) I made the decision just yesterday to undergo VNS surgery, and hopefully I'll get it done soon. I pray that it'll solve matters. It's been tough since 2016 because I had an accident while driving and now my wife has to drive everywhere and do much more than she should around the house. I also have a 2 year old daughter and another on the way.
I can see how you're dealing with the changes in your voice. It's gonna be nerve-wracking to see what it does to mine since I freelance doing professional voiceovers every now and then. But I hope it won't be much of a difference or anything painful to cope with. I'm also a writer so I hope it doesn't mess with the "creative spark" so to speak, but I have been reading it helps not just to restore memory but also re-enriches communication skills. If you can, please share any changes you've had with these since getting the surgery. Thanks buddy!
Did you have the VNS surgery? If so how is it working?
This is actually pretty informational and I didn’t think I’d find anything on the VNS from RUclips because I haven’t before, I’m getting my surgery done in a few days and I’m not nervous but excited. Thank you for an informational video even though it’s years later.
I just had VNS surgery 4 days ago. Still feeling rough from surgery. VNS will be turned on in 8 days. I love your videos. They have been most helpful, clearly explained and easily understood. Your story has been most inspirational, and I'm hoping to be off my medication at 5-6 months like you were. My epileptologist says not to count on it too much, but, hey...a lady can be optimistic, right?!
Hello. I just had the vns implanted this past Wednesday (January 6,2016). Your video was a big help because I was really curious if the vns would work for me. I have had seizures since I was 14 and I am now 22. Thanks a lot for posting this video because I, just like you, went online and there wasn't much information or feed backs about the vns. I am glad to hear that you are going 5 months strong and I pray that you will continue to be seizure free. Thanks again and God Bless!!!
How's it working for you??
I'm getting one soon. how did it work out?
@@tylersmyler she's keeping it a secret... when are you getting one?
In 2 Weeks. I'll keep you updated :)@@yetibigfoot7350
Bryan...thank u 4 the video. Ur a brave young
Man and an inspiration!!!
SO HAPPY for you to have 5 months seizure free!! I celebrate this tremendous victory for you!!
Bryan, THANK YOU SO MUCH FOR SHARING!! My son is having the VNS installed next week. Your videos are very encouraging to us!! We just received the discouraging news that surgery was not an option and the clouds rolled in. However, we were thrilled to find your videos. God Bless you in your continued recovery!
Hi Bryan. I really appreciate you sharing your Epilepsy and VNS experiences, I know it’s not something that’s easy to do, but it certainly helps others feel less alone and more informed. You are such a brave and positive person. Thank you!! I had my VNS implanted one week ago and although my medication and seizures are very well regulated and mild without interfering largely on my daily life, I am anxious to see the positive impact the VNS therapy will likely have in me.
Thanks again,
Alina.
Thank you so much. I’m so glad you made this channel. So happy this device exists. I have elusive symptoms and a kind of dysautonomia, making me produce more catecholamines than normal. They tested me for Pheochromocytoma etc... I’ve had such a long health journey for SO many years... I think this is the device that can finally help me. I might be able to sleep and exercise normally without feeling like I’m having a heart attack!! Xo thanks man!
Thanks for the vid.i have had the stimulus put in the chest a month.i haven't had any seizures yet in waiting on the set up of the device.
Your information was great.thanks
Thanks for sharing this...my son had his VNS implanted a few weeks now and I'm still watching to see how it goes!
HI. You are an inspiration. I feel so lucky that I don't suffer from epilepsy. Glad to see you have it under control.
Thanks for sharing this video!! Good like with everything, you look smart, mature and strong. I am sure things will be great for you!!
Thank you this is very helpful to me. My doctor recommended me getting this for my epilepsy / seizures.
Thank you so much for the help
thank you so much for the video! it's so informative and it's exactly what I was looking for. My sister needs to make a decision about VNS surgery, and your experience is very helpful for us.
Wow...thank you for making this video, Bryan. I've been having so many problems with being medication resistant. My epileptologist has recommended VNS and I have an appointment with the neurosurgeon in 3 days. I have read the brochure, read personal experiences online, buy you have really explained it and demonstrated it the best. I am really feeling less nervous with your " no big deal" attitude. I can see and hear how it effects you, and yes, I know everyone is different, but it just doesn't seem that bad when you explain it! So...thanks for putting me at ease. I am hoping I can cut down on these meds that are making me feel so disgusting and not be able to walk without looking and feeling like I'm drunk! THAT is my goal. Get this thing done, hopefully it will improve my seizures, and God willing...get the medication dosages lowered! Take care and again, thanks!
Did you get it?
You are a great person and I am about to get surgery for VNS and you have put me at ease. Thank you very much and GOD BLESS.
How's it going?
GREAT VIDEO... JUST SAW IT.. KEEP WALKING....
Thank you very much for making these videos and sharing your experience. I’m 30 and have had seizures since I was 16. I’ve tried lots of different medications and the best I can do is around 1 seizure a month. Currently on 2250mg of Keppra and 600mg of Vimpat a day. Really think VNS is my best option. Was so curious what they look like after installed and what life is like afterward. Thank you man!
Hey man thanks for uploading this I got told about the VNS thing by my doctor today, as a fellow lacrosse player would you recommend wearing chest pads over it. This really is one one of the better videos out there as is was worried about the change in voice and you have you shown it’s nots that bad
Once again great video
Thanks so much I am comming off of Carbamazapine.
Hi Bryan, great video....Thank you! Can you created an updated video to know if you are still seizure free now in 2022.
2 doctors strongly suggested that option for me, but I said no because the idea of surgery and the possible effects of this are too frightening for me.
ty for your awsomevideo
I hope u are well!
Thanks for posting this last year, it's been so helpful to hear from you and organictallgirl! I was considered for surgery, but am no longer a candidate, as they found I have primary generalized epilepsy. As we move forward, we're hoping to explore all of the potential options. Like you said, epilepsy is so different for each individual, but I'm curious as to what type of epilepsy you have (if you're comfortable sharing), and how the VNS is still working for you?
Hi Cassie, sorry for the late response but I hope it is still helpful. I was diagnosed with generalized Epilepsy as well. After medication was not working for me...even over-medication, I was sent to the hospital for a week to see if I was a candidate for brain surgery. In the hospital bed, they attatched 30 electrodes to my head and proceeded trying to induce seizure activity by flashing strobes, taking away meds, depriving sleep etc. The goal off the eeg was to try to locate the seizure activity. If there was a focal point (partial epilepsy) they would go in and slice that part out. However, they found that my seizures began and persisted all at once throughout the entire brain (generalized epilepsy.) I'm sure this is similar to what you went through since this is really the only surefire way of knowing for sure what kind of Epilepsy you have. After finding that I was not a candidate for brain surgery, My doctor suggested the VNS therapy as nearly my last option. It has now been 2 years and I can say that my life has turned around. I have had 2 mild seizures in the last 2 years both due to significant mental stress, of which I recovered quickly and is a significant improvement as compared to my previous 2-3 days a week of continuous debilitating seizing prior to surgery. Hope this helps!
My five year old just got this device on 12/11/2023
I remember going through that..It "clamps" your throat and it's hard to breath. After 6 yrs I have no grandmals, and when I have to swipe, I can hardly tell it's there. My 2nd surgery is coming up soon. Mine's as high and as fast as it'll go. It WILL take a toll on your vocal cords..So keep excersizing your voice incase you sing. That was "my" battle.
Hi I thanks for sharing your very informative video. I have a question, suppose you can't tell when your going to have a seizure & you have blank outs ( onset) seizures will they're be different ways to do the VNS? My neurologist was the one who mentioned about me getting the VNS. I just have to set up when I'm getting it done. I have to call them back & set it up
my son has the new one it has done great but he still has some seizures that it cant stop because i did not catch them in time but it does slow it down
🗣Yea eat everything in sight!!! Lol gains!!💯👌💪💪💪🙏🙏🙏
I'm getting one in 2 weeks :-O
hi bryan can i ask do you feel the vns go off when it sends the signal
Hi Bryan I really want to get the vns Iv had brain surgery twice and still didnt work and been on so many meds and ambulance has to be called every time but I just have one question and that is do you feel the mild shock go up your neck when the vns kicks in and does it hurt i just need to know the pros and cons before i go for it
I am thinking about getting the VNS. I had 1 concern and that concern is my sleep. I was curious if it causes insomnia. Is it going to make it hard for me to sleep? Also will I be able to exercise?
I have grandmal seizures, peti mal & onsets( blank outs)
Hi. I am going to be getting a vns device in the next couple months and was wondering if yours is still working good for you? Are you still happy with it? Any info you could pass along would be greatly appreciated. Thanks.
How does VNS affect sleep? Does it cause or worsen insomnia ?
I wear a device on my stomach for my diabetes to monitor my blood sugars
Hi Bryan, Today my son's neurologist suggested our son get the VNS. I am trying to research as much as I can. My son is 6yrs old has had seizures since he was 1.5yrs old. His seizures are becoming harder to stop and he is regressing so much after his seizures. We nearly lost him December 4th due to his seizures. My son is on Depakote and Topamax both 10ml 2x a day. We are hoping that the VNS would be a good thing for him and that he becomes seizure free.
+Jona Goldman Crosariol Hi Jona, Sorry about your son. I have tried out both of those medications with no success either. Most doctors will require supplemental medication along with the therapy but I can honestly say that VNS has changed my life. Can't guarantee he will be seizure free and the device works differently for everybody. In my case, I have had only 1 seizure in 2 years after the implant, am back in school, receiving straight A's, and just got a big promotion in the IT department. VNS has made my life manageable whereas medication was a detriment. I hope you continue to research and make the right decision for your son, and whatever your path good luck. With good support I'm sure he will get through it and I give you my best!
@@bryanbaker9489 Bryan, did it take a while for the VNS to become effective? We implanted this device in my son about a month ago and it's not at its full power yet. (currently at a 0.75 mA setting which goes off every 5 mins for a 30 sec duration). He is still experiencing seizures as of right now (2-3x per week). My question is, were you essentially seizure free the moment this device was implanted or did it take a while to get there?
Hello I'm nervous still about getting my VNS. I'm supposed to get mine on June 20th. How long will it take to heal? What I mean is w/ the stitches? What kind of shirt should I wear when I get my VNS? Because I'm pretty sure I cant wear a pull over or can I?
🗣Bryan....What's ur diet like🤔?????
does going to the gym with this have any negative effects?
hi bryan. can you recommend non invasive therapies that stimulate the vagus nerve ?
I am aware that consistent diaphragm breathing exercises and meditation are a couple, the hard part is keeping up with them constantly
Hey Bryan thanks for your journey and thoughts are you driving now!
Hey zep! I am driving now, and have been able to for some time after recovery. Perhaps one of the greatest achievements of those of us with Epilepsy. It's amazing how much we take for granted simple things such as being able to conveniently get to where we need to be until we no longer can!
Hey Bryan! I haven't driven for years my g-mal seizures haven't under control with medicaton. My score is 1x-2x monthly. Recently, my epidemiologist and neurosurgeon want me to go the vns. I just am not sure about the success rate vs choosing have the vns inserted in my chest. Bryan, the life changes we and I have to make because this are huge and we just don't have a choice some times. Thanks for your video's!
That only good if you feel them coming on???
Hey Bryan. I'm looking into VNS by my neuro's recommendation and I was just wondering a few things: What type of seizures did you mainly have before VNS? How frequently did you have seizures before VNS? How long have you had epilepsy? Thanks in advance.
I have Generalized Tonic Clonic Seizures. Seizures would vary in volume. When it first began they were only about once a month. When they became intolerable it was 2-3 times weekly. They were typically unpredictable which is what made them frightening. I have been diagnosed with Epilepsy for 5 years now
Thanks for answering. That's really helpful because that sounds like what I go through.
The one thing that you dont do is hit your magnet your magnet or drop or on the the floor because it will damage the magnet .
Why wen the vns goes off your voice goes hoarse if it is off.i don't understand
Ooh it is tough really my daughter has a epilepsy too so i have a question do you still taking a medicine while you using a magnet. Thanks and god bless you. i am hoping you well.
Please email me for help with this I just got mine on friday! Dabbinmahn710@gmail.com
🗣Maybe ur diet will help me out💯👌 Bryan so How much u weight now🤔🤔?????
I had it hard u just dont know Bryan I'm strong but it's still hard
Uhhhh getting my 5 day eeg done soon to see if I can get the VNS.
Shannon Hammond same here
Kylee Mays I'm going on the 25th I've had recurrent seizures they want to make sure it's epileptic seizures and not pnes because I haven't shown much seizure activity on an EEG before but I've heard that happens to some people. Also does anyone ever feel like they have energy after a seizure for an hour and then crash for hours?
Shannon Hammond im going august 14 for a week i was about 3 yrs without one then they started back up and i had 2 in one month so my doctor wants to do another video eeg but when i lived in japan my doctor there recommended the vns
do you know what kind of seizures you have?
Yes I have grand mal, petite, and this year got diagnosed with a new seizure tonic clonic ones but I've had them my entire life
I am grateful to you giving a reasonable review. My sister just had one installed, she's non verbal and severely impaired, so there isn't a reasonable way to ask her how a complex surgery is impacting her. They just started the pulses, yesterday, and I was worried about discomfort, but you had nothing to say about that, except that it wasn't.
I never want to see another seizure like I saw, again. She got so much for someone with so little, and it hurts me as her brother to see her short circuiting when we are trying to hang out. She didn't have many Grand Mal seizures for a long time, but she's older and the meds aren't working as well, anymore. Now I have a magnet wand to help her if she ever goes sideways, and I feel like there is help for her issues. I just want to help, I'm her little Big Brother and there was never anything I could do, before.
Blessings for your sister friend. She should feel no discomfort. Speaking or extraneous workouts were the only time I felt even the slightest discomfort. She will feel it the first couple of weeks, but the body adapts and she won't even notice it after some time. That is all depending on the milliamps they started the device on of course.
If I have any advice to give let me tellyou that the VNS is not a cure, nor a quick solution. I've never seen or experienced it take somebody out of a seizure. It is supposed to be a therapy. As I am a brother to an epileptic myself, I would suggest following whatever protocols or fast acting prescriptions your doctor subscribes and certainly don't depend on VNS to relieve your sister of a sudden seizure
@@bryanbaker9489 yeah, she just had one last night. We were lost about new procedure, but it's the second one I've seen, and it appears that putting a cloth in her hands is the best assistance I can currently offer. She'll chew her nails to flesh and wring her weak hand, otherwise. I'm hopeful that the nerve stimulator works as intended, once dosage is figured out, meanwhile I'm paying as much attention as possible to help her cope with future events.
@@zerosumgame5700 my brother had 3 yesterday and 3 the day before as well. I Beg you not to depend on the VNS, it is no better than any of the other drugs. Have you all tried cbd? I hate to be drastic but give me a moment and I will comment with a link or two...
ruclips.net/video/3N8QMeIsX2c/видео.html
dang. the vns bulges out more than they say. ugh. and i where tons of shirts where the neck would show the vns. i can barely do anything anymore and it seems that all i have left is my appearance. i think the vns will be plan Z.
Meanwhile the root cause of the seizures were never addressed in the first place
for those of u worrying about the voice change side effect remember its much worse for girls.