Epilepsy Community

hi meg. there is a device called a Vagus Nerve Stimulator for partial szs that you can swipe and the feelings or auras may or may not go away.

I have one and it really works great.

it is an implant in your left chest like a pacemaker and makes short regular electrical impulses up to the brain via 2 electrodes that are around around the nerve and an anchor also wound the the nerve. It hits the electrodes and sends impulses up the brainstem to teh rbain and intruppr the neuronal activity that may cause sz activity. You can feel it in the VERY begining. it does not hurt. You get haorse when it goes off and you may cough some when it is running.

it comes wiht a very high power magnet that when you CAN feel it comeing on if you do, just pass that magnet over the VNS that is under the skin and it will either stop it, shorten it, or decrese its severtity. IT also decreses the post-ictal time as well. It runs every 5 minutes for 30 seconds.

if you have zero time to swipe then your family members can do it for you and it will still have the same ieffect as if you were doing it.

The types of szs that it works for are any type of partial szs, T/Cs and Absence.

the next time you see your neuro bring it up adn see if he thins you might be a candidtate for this. you never know.

The make an incsion in you left chest to implant it and find an crease in your neck to access the Vagus nerve to get the coils on it. The surgery does hurt but in the long run it is well worth it.

Nancy

Yes, kittyqqq

I have experienced many seizures w/o warning. I used to have auras when this started back in the 70s. But as time passed the auras disappeared. I no longer had the chance to let people know that I felt a seizure coming. Many of my auras were simply auras w/o seizure activity.

The few seizures I have had this year(I had a lobectomy in '02) have occurred with no warning. It is not unusual for this to happen. A friend of mine had similiar experiences also.

angie

Dear Hawaiin Girl,
how the heck can i use a vns if i have no aura???

Hi Angie
thank you for your reply. I was wondering if your lobectomy gave you any side effects and if you'd reccomend it. My neurologist gave me that option and i havent put much thought to it, just been avoiding it. Yesterday I had a bad seizure and i came to with a bunch of strangers around me, and i was pretty embarrassed not to mention i injured my hip and my hand. I'm sick of these seizures, both the partial and the convulsive. Medication's not working, Thanks
~Meg

Hi Meg, though out your life you may experience several kinds of seizures. Most of mine are with out warning and the falls sure take their toll on your head and body. I'm glad you have friends, family and a good neurologist. Take extra care to take your medicine, eat properly and get plenty of sleep, keep a journal and try to discover what may be triggering your seizures. If you LOVE dogs, consider getting a service or assistant dog trained for Seizure Response. Dogs can not be trained to alert before your seizure, but many dogs do exhibit clingy, nervous, or whining behavior that goes ignored.

Eleven years ago my son got me a Manchester Terrier puppy, and before the first day was over-- he realized she was jumping on me and barking before I seized. It took two years to get through the training and learn to listen to her-- but I have not fallen since April took over. She has never missed giving me an alert, and usually gives me 30 to 40 mins. advanced warning. You train for a Seizure Response but you may find your dog alerting before the seizure, either way you are never alone. It's amazing what you can accomplish when you stop bashing your head into the floor. Best of Luck! ~Jan

Hi kitty,

My lobectomy was done in Mps. I have no regrets about it.

I did experience some confusion the first few wks or so about the surgery. People I knew looked like strangers to me whereas strangers I recognized as friends. This condition did pass. I think that period of confusion is known as hyper-familiarity.

Following that period of confusion, I noticed that my memory was much better. I was recalling names, phone numbers, street addresses,etc that I hadn't thought about in years.

I posted a story some time ago. No one has replied to it yet. "what moved you to have brain surgery" is the title. Enter that in the search box and see if it comes up.

Wow, the seizures I have had in public. Crossing the street, changing bus lines, pulling at my clothes(my brother and a friend nicknamed me "the stripper"). Fortunately, I never disrobed. I know it's difficult to have seizures in public, partic when family/friends aren't around. But I must say, I never felt any reason for embarrassment. Oddly enough,while during the seizure, I simply kept doing what I was doing.

Check out my story. It might help answer some of your questions/concerns. If I hadn't had the lobectomy, I think that I'd be dealing with the "what if" sydrome.

I hope this helps,
angie

My doctor gave me material (a CD and printed material) regarding Vagus Nerve Stimulation. I do not have any warning when my seizures are going to occur. From what I read regarding Vagus Nere Stimulation, you would have to know when you have a seizure approaching for the device effective. If you do not know when that seizure is coming on, the stimulator is of no benefit to you.

yyour parents or whomeever catch you in a sz or start to see ir occur even if you can not swipe yourself another person CAN! IT will still slow it down, decrease its severity and hoepfully shut down the slowness of the pot-ictal activity and shorten it up some.

WHen I di not have time to swipe my self my husband does it for me nad it works sjustfine. He notices a glass like stare right before I keel over or I hear 3 bangs adn do not havethe time to do it. He just grabs his and swipes me while I am in the middle iof the sz most of the time it stops it and others it just shortens it.

NAncy

but is islike I said before others can swipes you for you. You may not know it is coming but everry one has a certain things that go one with their body expressions bvefiore a sz hits opr even act strange and it can tip people off and they can get the magnet and swipe you. I am telling you that that is the other way it can work. I have GMs sometimgs and Jasyn, my nusband has to do the wiping for me while I am in the sz, it takes a few more seconds acfter he does that and I start coming out ofo it. I used to have post-ictal periods that lasted 24-48 hrs sometimes less. And the VNS has shortened it to around 30 minutes. BIG improment.

Dop not worry about what that stuff says. I have one and it does work the other way. If you can not swipe adn you fall into a szs another person can do it for you. ppl do that for me wherrther it is a neighbor, a realitve or even my own kid can swipe me in the middle of it.

IT works both ways.

New info comes out every year with and I have a booklet that cane with it and it has alot of how to and now not tos in it. F&As and other good stuff in it.. it also comes with the magnets your famioy can use on you .

it covers all types of partial szs, tonic clonic szs and Absence szs.

I have 3 friends that have had the implant. one has T/Cs no warning she keels over and her family starts swiping her, the other one had brain surgery that did not work out and she got the VNS and it worked on her, and the other one had over 20 szs a day and he or hi family or friends swiped him. all of them kknew he had a pager style magnet that hooked to his belt and they took it off and swiped him. IT worked.

there are other ways to beat that.

I just saw my neuro yesterday and then beat it back to HI.

I asked him about that for you and he said you don;t have to ahve an wura to have a VNS becuawe it will help all people get some relief. Even if you can't swipe becuase of no aura you can still benifit from it and get some relief and feel a little bit better than you ddid before you were before you got implanted.

trust me on this one. I know the VNS, I help ppl wiotj it, and I teach them about it if I can answering the questions that I can. I have told them and shared and suported ppl thru my experiences wityh the VNSyou can join the VNS message baord at www.cyberonics.com or get more info at www.VNStherapy.com both good sites, I have been at both and have helped ppl there.

IF fact I had 4 szs last night becuase I forgot to take my morning meds a real rarity for me and then took a 6 hr flight back to Honululu. I had a drop attack one GM and 2 partial szs. My husband swiped me on the GM, and the partial on and it worked and I came out of it just fine no aura for me on GM either. Just the partial ones. you can not swipe for drop attacks becuase htey happen in just seconds so fast that you can not catch them in time. I here 3 loud bangs as the aura, and my doc said that the auras can cahnge. I used to smell burning rubbber or feces.

but you can get some relief with out having an aura. IT will still work,.

HI girl

I also never know when my grand mal seizures are coming. I also do not have any auras EVER. My friends and family know about my epilepsy, that I carry a lorazipam in a locket I wear (I tend to have grand mal seizures one right after another). Today, when I started having a petit mal, I was on the phone talking to my daughter. She told me to take a pill because I wasn't making any sense in speaking. Without my friends and family, I would fall and hurt myself a lot. I do not drive, of course. Most of my seizures, of any kind, come when I am very tired. Good sleep patterns and taking my meds infrequent helps. I have tried every meds available to me. Surgery has not been an option I want to try since I have to have some aura or someone to tell me when I need to push it.

Hi Meg,

I also don't get an aura and it annoys the hell out of me. I have partial, complex partial and tonic clonic seizures. My seizures are originated from my right frontal lobe and I'm due to have surgery next month. I had my first surgery in May but, due to complications, we only got as far as the subdural grids. I'm currently taking 2 AED's and can't wait to start reducing those.

As far as the VNS goes it was never provided as an option for me due to this issue.

- Colleen

I am sorry I amde everyone so mad at me. all ir was was a suggestin to those or anyone because you can stillahvesome else swiped foer you, i was NOT making ant trrouble or rying to hurt anyone, just advice and sugggestiona was all.

Nancy

Hi Nancy,

I don't think anyone is or should be mad at you. Whatever info you offered was made in good faith according to your experiences.

Those of us who live with ep daily should understand that one way isn't guaranteed to work for the other. Whatever info you offered, I do feel you did so to help the others.

No, I don't have the VNS but I have been living with ep for 36 yrs. I do understand the urge to help others who have questions/concerns.

Today, people are anxious/impatient for answers. When they don't get them right away, they strike out at the nearest thing/person.

Nancy, cont to share what you know.

angie

Hi Kitty. I wish you the best of luck. Your sx sound very similar to mine. My seizures started about 45 years ago @ 12 years old after an auto accident. Meds controlled them & I led a normal life with school, jobs, & driving, I live alone with my dog & cat, & am a little worried now d/t these seizures. Once my neurologist decided I was a candidate for the VNS, he had one in me within a couple months. That included all surgical arrangements, insurance coverage, & medical management after the adjustments started. That's where we are now & it's not an easy path, though I guess there haven't been any complications with it. It could be preventing seizures since it's going off at regular intervals. The meds alone were't preventing the seizures any more. The VNS Isn't comletely preventing them them einther. And I haven't really learn'd how to use the magnet. Now my grand seizures mean I lose touch with reality & wake up in the ER wondering what the excitement is about; why I'm restrained. The inside of my mouth is very sore & swollen, & I'v recently chipped a tooth.
Basically, my seizures aren't yet stabilized, but something is being done & it seems appropriate, done by someone competent & with good staffing. It's amazing how important reassuring that is. I've rambled here, too... It sounds like you need yourself a good source of info. MB