Tell me...

By liquidvamps Latest Activity November 29, 2010 at 2:51 am Views 3,649 Replies 10 Likes 2


Does vns work? I have not heard much about it, but am highly interested. I have gone 4 years on Dilantin, Depicote and Neurontin and am still having them. Not as bad, but still do. Also, my memory is shot now and I am tired of wondering if I had taken my meds or not and afraid of overdosing or not having taken them at all and I do not like the way they make me feel. All I want to do all day because of them is sleep, and they don't help my memory loss one bit. Even though we have insurance and I am with the epilepsy foundation the insurance deductible is not nice. I want the ease that vns is supposed to provide to an already complicated situation. Could someone tell me their experience with vns inplants?

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Replies (10 replies)

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  • momAmber
    momAmber November 26, 2013 at 5:37 pm   

    Oh my goodness, I cannot praise Cyberonics VNS highly enough! Before my VNS, I was on about 12 medications at any given time, and still having up to 20 petit mal seizures on bad days. If I wasn't having a seizure or post-ictal, I was sleeping 18-20 hours every day due to the meds. It just wasn't living at all. I was told by a neurologist that I really needed to just accept that this was the best they could do for me. I asked my primary physician for a second opinion, waited 6 months for an appointment with an epileptologist 3 hours away from my home. But oh, what a difference! I had mine implanted Dec 2008. Within 6 months of working on settings, I was seizure free! Then my doctor started taking me off some of the medicines. Now, I take the generic for Keppra, and that's it! Because of the VNS, I was able to have my daughter, who turned 2 last July. Before the VNS, there would have been very little hope that I would be able to be a mommy, the biggest dream I've had my whole life. Now I am.

  • Neurologicass
    Neurologicass November 19, 2012 at 10:38 pm   

    I would give it a try if it's one of your options… For most it tends to work, or improve the situation. As for some I've talked with, it doesn't improve the situation. But for some it's out of the ?- and not an option. So if your willing to take a chance… Go for it.

  • Kodak_Kit
    Kodak_Kit April 28, 2012 at 4:46 pm   

    I was just told by my neuro that I have a 99% chance of having epilepsy…that in her honest option I have it based in my seizures…there waiting too officially diagnose me next week after my EEG…I'm scared and need HELP what do I need too know too get through this!? Thanks

  • julesdg
    julesdg August 27, 2011 at 1:38 am   

    The information for the VNS tele conference is as follows: It is on the first Tuesday of every month at 7pm central time. The phone number is 1-800-867-7846. For more information go to this website:

  • UKEpilepsy
    UKEpilepsy August 13, 2011 at 9:47 am   
    Edited August 13, 2011 at 9:47 am by UKEpilepsy

    Hey, yes in my opinion the VNS is amazing. My son Thomas had one fitted in March 2010, and his life has improved dramatically since! He is now going weeks with no seizures, before the implant he was having 20 per day.

    I can't reccomend it enough!!

    Also.. something unique on the internet.. My 5 year old talking about his VNS on my blog… check it out !

    I have also written other articles about the VNS.

    Hope you enjoy.


  • julesdg
    julesdg August 12, 2011 at 8:25 pm   

    I have had my VNS since 1996. I am on only one medication with it. It has greatly improved my seizure frequency. There are some side effects with it, like all drugs/treatments. The cyberonics company, the makers of the VNS, have a conference call the first part of each month for new and/or current paitents oranyone with questions. I will have to look up the day and time and the phone number.

  • jaybird123
    jaybird123 March 8, 2011 at 12:00 pm   

    I had my first VNS put in 2001. My third one was replaced in 2009. It has lessoned my seizures. At first it was annoying when it would go off and I would talk. Because of the "voice changing" lol. But you get use to it. And I was always afraid people could hear voice. But I would ask my family and they say they can't hear it. I am glad I had it done. I don't carry my magnet but the VNS goes off every 18 seconds. Each person has their own setting. I think it is really worth looking into.

  • Jeanette Terry
  • riverkings
    riverkings November 30, 2010 at 8:33 am   

    Our experience with the VNS with my daughter has been good. She has done well with it and I have seen a decrease in seizures. She is non-verbal so I can't tell you exactly how she feels about it. It defiantly gets better the longer she has it. I have seen the magnet totally stop a seizure but yet other times it hasn't made any difference. She is still on meds though, we haven't been able to get rid of those. I understand your frustration on not being able to remember if you have taken your meds. I've started doing that too with my daughter and I don't even have the excuse of meds, I've started sorting her full days meds in the morning into 3 small cups for her morning,afternoon and nighttime pills. then I give her the morning pills and put the others up in the kitchen window sill where I will be able to see them. that way at any time if I am wondering if I have given the pills I can just look. It has made my life a lot easier! About the VNS, it is like any med, I have talked with people that it has changed their life for the better and others that had a terrible experience, but for us, I am glad we decided to give it a try.

  • daddysbabygirl
    daddysbabygirl March 23, 2011 at 11:23 am   

    yes i have one since october 2001 and have only had one seizure since when bc it exploeed becuase i was it would last for seven years but it only last five but i havent had one since then