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Vagus Nerve Stimulation

Posted , 9 users are following.

karen26258
karen26258

I'm having a vns fitted because I've tried numerous drugs and nothing works, it's the latest model which was launched last month.  I can advise any epileptic to look into it if their current therapy doesn't work, don't waste years and years of trying different meds.

1 like, 13 replies

13 Replies

  • DawnDedee
    DawnDedee karen26258

    Posted

    Hi Karen,

    I am on this forum because I am looking for knowledge and help for my granddaughter whom I raise who has Generalized Epilepsy,  

    Would you mind explaining in detail what exactly it means that you are having done.  I understand the role that the vagus nerve plays in my own body, but I do not know how it connects to epilepsy.  Also which kind of epilepsy to you have?

    My baby lives on Lamictal and Gabapentin and also suffers horrid migraine headaches for which she also has medication.  She is 14 and a half years old and has been having seizures her whole life, only she could not tell me anything when she was a baby and a toddler.  I fought with doctors who would not listen to me that there was a pattern occuring that was not normal.  It took years to obtain a diagnosis with all the while she was suffering.

    She now lives on Lamictal and Gabapentin and also some meds for the horrid migraines she suffers.  Any information would help me help her.  Have you heard of Cannibis oil being used for epilepsy?

    Thank you for anything you share!

    Dawn, USA 

    • karen26258
      karen26258 DawnDedee

      Posted

      Hi Dawn, the vagus nerve runs thru your body from brain to legs, we have a left and a right one, because its called a cranial nerve and it's connected with the major organs. The VNS is a generator like a pacemaker and it is programmed by your Neurologist it's as big as a dollar and inserted under the collarbone on the left side and then a wire/cable is coiled around the nerve on the side of the neck. The patient or caregiver carries a magnet on the wrist or on the belt about as big as a watch and when the warning comes you can swipe the magnet over the VNS or anyone can and it either stops the seizure or reduces the severity and length of time. But as the device is programed it automatically switches on every 5 minutes and stimulates the brain. The model 103 is the popular one and the smallestin size. It would be suitable for a 14 year old. You need to take a look at website here it is.http://us.cyberonics.com/en/vns-therapy-for-epilepsy/healthcare-professionals/. Good luck and let me know if this information has been any good for you. Karen
  • david01026
    david01026 karen26258

    Posted

    What kind of seizures do you have? and their pattern if there is one.
    • karen26258
      karen26258 david01026

      Posted

      Hi David.  I have complex partial seizures and also simple partial seizures, which I believe are the most difficult ones to control, unlike the generalised ones.  I've tried numerous drugs which when first started they work then my body/brain gets used to them and I'm back to square one!!  the VNS does work with all types of seizures, the criteria which is considered is if you've tried more than 3 types of drug and no different with seizure control.  The surgeon/neurologist do also mention that the VNS does not always suit everyone but I'm trying it anyway because I've nothing to lose.  Take a look at the Cyberonics website it could work for you.
  • steve1951
    steve1951 karen26258

    Posted

    Karen

    I really hope the vns is a success! I read that many people may still need to take a med with it. Within the last year, after some episodes, my Dr has kept me on the same two 2 meds, lamotrigine 450 mg/day (Lamictal in divided doses) and now on levetiracetam ER (Keppra, Extended Release taken one dose a day, Went from 1000mg to 1500mg). He’s changed the combo 2 times. Both ER’s, then back to regular lamotrigine and levetiracetam ER. Been on many meds, either didn’t work or the side effects were too strong to deal with. About 5 years ago my Dr suggested a vns but I was too squeamish about having something implanted in my chest and a wire running to the nerves. On the Cyberonics web site you can open (as opposed to saving it) a detailed patient manual. It was very informative but I still have a couple of questions about it. I have a combo of secondary generalized tonic clonic and complex partial seizure epilepsy so I think I would have to supplement the vns with med. as many people do. On my next Dr visit, I’m not sure to bring up the vns if he doesn’t mention it. The vns doesn’t work for everyone and there are possible side effects to weigh if you search the web on the vns.

    Karen, definitely post over time how you’re progressing after the vns implant.     

    DaenDedee, I’ve also thought about using CDB oil (not the high THC). A few years ago, before CDB was studied and became in the news, I asked my neurologist what he thought about mj., mainly known for THC. He didn’t think it helped. CDB became famous as reported on TV and became known as Charlottes Web. CDB products can be found all over the web and it’s not cheap and I wonder about the purity. That’s another web search. Wikipedia has an article that you may want to read. GW Pharmaceuticals is developing a 98% pure CDB drug, hardly any THC. The drug is known as Epidiolex and still being tested, but if it is approved by the FDA (the U.S), I bet the cost will be very expensive. I’m wagering my insurance (in the U.S.) won’t pay for it. I’m seeing my GP (not neurologist) this coming week and will ask him about CDB, he’s more open minded.

    Steve

    P.S. I have one piece of advice for everyone. If another Dr besides your specialist prescribes a med, look it up on the web first to see the warnings first. Another Dr gave me a med that lowers the seizure threshold and I began to have trouble. This Dr knew of my condition but was unaware of the med side effect on epilepsy.

    • karen26258
      karen26258 steve1951

      Posted

      Hi Steve,

      I'm taking lamictal 450mg each day and have been since 1998, my dr says it's my anchor drug. Also I take a new drug too Perampanel and clobazam 10mg per day, I was told that I have to keep taking the drugs when the vns is fitted but if it's successful may be able to reduce the dose and therefore reduce the side effects too, especially the tiredness!

      I also get terrible depression after a seizure and another bonus is it can help with that too. The vns I'm having is the latest model which also reacts to the hearbeat change as well on cyberonics its the AspireSR 106, I'm willing to try anything, like you a bit squeamish about the wires going through to the neck but I'm hoping there's more pluses than minuses. I'll be posting more on here with more details etc.

    • karen26258
      karen26258 steve1951

      Posted

      HI STEVE, VNS so far is working for me, I've had it ramped up twice now and it's detecting seizures and also any changes in my heart rate. The magnet is a bit bulky and takes a bit to get used to but I will get accustomed to it. I only use the magnet if I feel the seizure is not subsiding but mainly let the device stop or reduce the seizures and hey ho it's stopped quite a few. 8 weeks now since the op and it's still on a fairly low setting. The depression is used to get after a seizure is no where near as bad as before. I can recommend it to anyone who has drug resistant epilepsy
    • steve1951
      steve1951 karen26258

      Posted

      KAREN Good to hear that the VNS is working! Saw my Dr recently and my combo of drugs have been working except for a brief aura. A VNS was not brought up. How do they tell when the VNS is set at the right level? Take Care.
    • karen26258
      karen26258 steve1951

      Posted

      The VNS is activated 2 weeks after surgery, then you have to keep a record of all seizures on a daily basis, every 4 weeks is a visit to the hospital and it's 'ramped up' until the patient gets to the setting that controls and shortens seizures, so far it's worked for me and stopped me falling in the street, etc. It also comes with a magnet which you can swipe over your chest if you are getting a warning, to give the stimulator an extra boost. So really it's trial and error with the settings for each person, but you'll know when it's working. If your Dr hasn't mentioned it, ask him or ask to be referred to someone who specialises, Cyberonics they're calling out for people to try these gadgets and report back to them their experiences.
  • sarahboo86
    sarahboo86 karen26258

    Posted

    Karen,

    Thank you for sharing your background and information about the VNS and your experience so far with the treatment. I’m very much interested in the treatment and look forward to my talk with my neurologist about it.

    I've had epilepsy since I was 4 years old. Medicine since then has never fully controlled it. I only have seizures while I'm sleeping. I'm hoping that this treatment will help a great deal. I've been through several medicines, most of which I had a bad reaction to. I'm on Lamotrigine 200mg and only take it at night. I’m very happy with this drug, even though it has not fully controlled my seizures. My safety, like many others, is my husbands and mine biggest concern. I’ve had several accidents during a seizure that required an ER visit after the episode because I had fallen out of bed and hurt myself. We have taken actions to protect me if I do fall but my husband might not always be with me and be able to prevent me from falling. We are military you see. I usually have to sleep on the floor if no one is in the room with me. I’d like my husband have a better piece of mind when I’m alone at night. It would put my mind at ease as well since I have a one-and-a-half-year-old to take care of. So I’m looking forward to finding out if I’m a good candidate for it since I only have seizures at night.

    Have you heard of any studies or anything with nocturnal patients and the VNS by any chance? I know I’ll get some answers tomorrow but wanted to see if anyone had any experience with it.

    Thanks again for sharing your story and experience!

  • michaelwilbur11
    michaelwilbur11 karen26258

    Posted

    i have the vns implant model 106 i was wondering if the hoarseness ever gets better where its not as bad i sing at my church and i preach and it is very discouraging when my voice goes out
    • karen26258
      karen26258 michaelwilbur11

      Posted

      Hi Michael, yes the hoarseness does get better especially if you mention it to the specialist nurse and she can do an adjustment on the width of the pulses, it certainly works. But the hoarseness or burning sensation gets easier and more comfortable after a few days. Also the stronger the stimulation the stronger the hoarseness is, mine is at 2,000, I tried to cope with 1,850 but couldn't. Since last hospital appt (8 weeks ago) I haven't used my magnet and that's an achievement! Also if you're doing singing or public speaking you just tape the magnet to your chest and it stops stimulation temporarily.

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