18 patient evaluations for Vagus Nerve Stimulation (VNS)

72 members have decided to share their profiles only with other members of PatientsLikeMe.

Sort by: Most recent

Jun 12, 2019 (Started Dec 10, 1999)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    Mild (for Overall) (coughing while drinking, dry cough, hoarseness)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Advice & Tips: Actually catches most seizures. The bulk Happens when going to bed. I was flabberghasted because battery is at 75%-100%. I have had it since Aug. 29, 2017. The nuerosurgeon said it should last 3-4 years. Looks like I will hit 4-6 year, or hoping. Has picked up my attitude.
Cost: < $25 monthly

Apr 23, 2019 (Started Dec 10, 1999)

  • Effectiveness
    Moderate (for epilepsy)
  • Side effects
    Mild (for Overall) (coughing while drinking, dry cough, hoarseness)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Advice & Tips: Various sensations. Pain when tashecadia turns it on in the hollow area under my addams apple. At various time theres a rapid pulsating sensation 1 or 1.5 inches above the middle of right clavicle. Sometimes along with the aura theres a super rapid tritchig on the inner side of the bicep on right arm
Cost: < $25 monthly

Dec 1, 2018 (Started Dec 10, 1999)

  • Effectiveness
    Moderate (for epilepsy)
  • Side effects
    Mild (for Overall) (coughing while drinking, dry cough, hoarseness)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Cost: < $25 monthly

Sep 8, 2018 (Started Dec 10, 1999)

  • Effectiveness
    Moderate (for epilepsy)
  • Side effects
    Mild (for Overall) (coughing while drinking, dry cough, hoarseness)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Advice & Tips: still hoarse some and only have problem swallowing a drink when the Tachecardia sensor turns it on.
Cost: < $25 monthly

May 9, 2018 (Started Dec 10, 1999)

  • Effectiveness
    Moderate (for epilepsy)
  • Side effects
    Mild (for Overall) (coughing while drinking, dry cough, hoarseness)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Cost: < $25 monthly

Nov 16, 2017 (Started Dec 10, 1999)

  • Effectiveness
    Moderate (for epilepsy)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Advice & Tips: left lead has 2 wires and the new VNS's have 1. So had to get a new lead on mt right sideon 8/29/17.
Cost: < $25 monthly

Dec 11, 2016 (Started Dec 10, 1999)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    Mild (for Overall) (dry cough, hoarseness)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Cost: < $25 monthly

Oct 14, 2016 (Started Dec 10, 1999)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    Mild (for Overall) (dry cough, hoarseness)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Advice & Tips: Ever since increasing the frequency last time my seizures dropped at a very noticlable rate unless I was very stressed. The end of September I noticed the hiccups happen only after using the magnet. So I want magnet lowered to match when the VNS goes off normally. I want what ever they did increased by half.
Cost: < $25 monthly

May 24, 2016 (Started Dec 10, 1999)

  • Effectiveness
    Moderate (for epilepsy)
  • Side effects
    Mild (for Overall) (dry cough, hoarseness)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Cost: < $25 monthly

Apr 26, 2016 (Started Dec 10, 1999)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Advice & Tips: Was implanted 8/12/09 and on my last study visit approx January 2014 it was at 50%.  my first clinic on 2/13/14  its still 50%. On 1/18/16 it was raised along with my Aptiom.  Seizures Decreased but not sure why, still at 50%. At this appointment 4/25/16 it was increased again along with making the maknet setting higher.  Was STILL at 50%.    I asked his nurse  and was told so BS excuse that is where it should be.  you Mean to tell me that in 5 years 4 months I used 50%. But 2 years 5 months later It is common to have not used even 1%.  I think it should have at least used 5-10%.
Cost: < $25 monthly

Nov 12, 2015 (Started Dec 10, 1999)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Advice & Tips: no packing list.
Cost: < $25 monthly

Feb 19, 2015 (Started Dec 10, 1999)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Cost: < $25 monthly

Jan 21, 2015 (Started Dec 10, 1999)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Advice & Tips: the last replacement of the generator was 8-12-2009. not sure how much more juice this uses now since increased. After my last visit in December 18th 2014 the seizure have gone down the following week but are back up now. I have had 136 in the past 4 weeks according to this.
Cost: < $25 monthly

Dec 20, 2014 (Started Dec 10, 1999)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Cost: < $25 monthly

Nov 28, 2014 (Started Dec 10, 1999)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Cost: < $25 monthly

Nov 18, 2014 (Started Dec 10, 1999)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    Mild (for Overall) (hoarseness)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Advice & Tips: the cough lasted only 2 hours after the increase.
Cost: < $25 monthly

Nov 3, 2014 (Started Dec 10, 1999)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Cost: < $25 monthly

Oct 24, 2014 (Started Dec 10, 1999)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Advice & Tips: wanna raise strength maybe frequency.
Cost: < $25 monthly

Oct 21, 2014 (Started Dec 10, 1999)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Cost: < $25 monthly

Oct 17, 2014 (Started Dec 10, 1999)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Cost: < $25 monthly

Oct 14, 2014 (Started Dec 10, 1999)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Cost: < $25 monthly

Oct 12, 2014 (Started Dec 10, 1999)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Advice & Tips: eanna raise it or the frequency.
Cost: < $25 monthly

Oct 11, 2014 (Started Dec 10, 1999)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Cost: < $25 monthly

Oct 9, 2014 (Started Dec 10, 1999)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Advice & Tips: curious about raising it. Since being replaced it has only been changed a couple times. I just dont want it to be as strong as the magnet. msybe legthen time on. Ask Dr. Labiner
Cost: < $25 monthly

Oct 7, 2014 (Started Dec 10, 1999)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Advice & Tips: like to try to raise VNS a little. Dont think we do much but check it in the drug study may have raised the manual activation strength. Can't remember any other times.
Cost: < $25 monthly

Oct 5, 2014 (Started Dec 10, 1999)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Cost: < $25 monthly

Sep 26, 2014 (Started Dec 10, 1999)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Cost: < $25 monthly

Sep 25, 2014 (Started Dec 10, 1999)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Cost: < $25 monthly

Sep 18, 2014 (Started Dec 10, 1999)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Cost: < $25 monthly

Sep 15, 2014 (Started Dec 10, 1999)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Cost: < $25 monthly

Sep 12, 2014 (Started Dec 10, 1999)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Advice & Tips: at about 50% so have 4-5 more years on this one.
Cost: < $25 monthly

Sep 10, 2014 (Started Dec 10, 1999)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Cost: < $25 monthly

Sep 8, 2014 (Started Dec 10, 1999)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Cost: < $25 monthly

Sep 4, 2014 (Started Dec 10, 1999)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Cost: < $25 monthly

Aug 31, 2014 (Started Dec 10, 1999)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: As needed
Cost: < $25 monthly
  • 0 helpful marks

Jan 12, 2014 (Started Jul 21, 2010)

  • Effectiveness
    Major (for seizures (grand mal or tonic-clonic))
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: Daily
Advice & Tips: I STRONGLY suggest to all of you who are a candidate for a VNS to go for it. You have nothing to lose. This has changed my life and my family's also. I even finally got my drivers license at the age of 42. Miracles can happen.
Cost: < $25 monthly
Side effects: strange cough

Jun 17, 2012 (Started Jul 21, 2010)

  • Effectiveness
    Major (for seizures (grand mal or tonic-clonic))
  • Side effects
    Mild (for Overall) (strange cough)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: Daily
Advice & Tips: I can only say this the VNS has changed my life totqlly and I have a new outlook for life. I feel better and I want to wake up in the morning and look forward to the day. I must say if you have the opportunity to have this procedure done take it.
Cost: < $25 monthly
Side effects: strange cough

Oct 6, 2010 (Started Jul 21, 2010)

  • Effectiveness
    Slight (for seizures (grand mal or tonic-clonic))
  • Side effects
    Mild (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: Daily
Advice & Tips: Patience, this treatment takes a lot of patience. There are many side effects and it takes a lot of time but in my eyes in the long run it will all be worth it. I just went through a day where I had 4 grand mal seizures in one day and ended up in the ICU for three days. My wife told my that the seizures were shorter and I came out of them faster so I look at it this way The VNS is starting to work. I just have to be patient and that is the best advice I can give to anyone thinking of this procedure. Be PATIENT it will work out in time.
Cost: < $25 monthly
Side effects: strange cough

Aug 25, 2010 (Started Jul 21, 2010)

  • Effectiveness
    Major (for seizures (grand mal or tonic-clonic))
  • Side effects
    Moderate (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: Daily
Advice & Tips: I only had the surgery a month ago but I have already seen improvements. I have had seizures without losing consciousness or having convulsions. I am very horse but i am sure when they find the right level my voice will get back to normal. I mean after all the stimulator is going off every 5 minutes right now. i can't tell when it goes off anymore. I could for the first couple of days.
Side effects: strange cough
  • 2 helpful marks

Aug 10, 2012 (Started Jan 11, 2012)

  • Effectiveness
    Major (for seizures (complex partial))
  • Effectiveness
    Major (for epilepsy)
  • Side effects
    Moderate (for Overall) (shortness of breath (dyspnea))
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: Daily
Advice & Tips: It takes some getting use to. See a neurophyscologist to help you to accept and adjust. It is a physical and mental challange but once you have gotten over the first hurdle and can see the change it is making it does become easier. Unexpected benifit for me is that I feel more alert and less tired. It has been a positive treatment for me.
Cost: < $25 monthly
  • 1 helpful mark

Jun 15, 2010 (Started May 29, 2009)

  • Effectiveness
    None (for epilepsy)
  • Side effects
    Severe (for Overall) (numbness in left side of face, suicidal, depression with anxiety, numbness in hands and arms in am, cramps in upper back)
  • Adherence
    Always
  • Burden
    Very hard to take
Advice & Tips: my experience included faulty equipment from Cyberonics (VNS manufacturer) that shocked me twice SEVERELY and would not stop....DO NOT RECIEVE THIS DEVICE. I did however receive authorization for my Michigan Medical Marijuana Permit from a very frightened Neurologist who didn't know what he was signing immediately after I had been shocked =]
  • 1 helpful mark

Jan 3, 2009 (Started Jan 03, 2009)

  • Effectiveness
    None (for epilepsy)
  • Side effects
    Mild (for Overall) (voice changes, chest pain)
  • Adherence
    Usually
  • Burden
    Somewhat hard to take
Dosage: One time
Advice & Tips: I want this device removed but so far none of my doctors will do so.
  • 1 helpful mark

Oct 20, 2011 (Started May 22, 2001)

  • Effectiveness
    Moderate (for epilepsy)
  • Side effects
    Severe (for Overall) (swallowing difficulty (dysphagia))
  • Adherence
    Always
  • Burden
    Very hard to take
Dosage: Weekly
Advice & Tips: Dr. turned it off for a year and that helped. Now I am having the symptoms again.
Cost: < $25 monthly
Side effects: swallowing difficulty (dysphagia)

Sep 15, 2000 (Started May 22, 2001)

  • Effectiveness
    Moderate (for epilepsy)
  • Side effects
    Moderate (for Overall)
  • Adherence
    Always
  • Burden
    Somewhat hard to take
Advice & Tips: Initially asthma symptoms increased, used O2. I lost my ability to sing, Seizures increased, changed Epileptologist Used all ranges on machine. Changed battery. I wanted it out but seizures started to get better Now w/ low levels my seizures are better under control. Asthma is better Throat is not swollen anymore
Side effects: swallowing difficulty (dysphagia)
  • 1 helpful mark

Sep 18, 2006 (Started Sep 18, 2006)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    Mild (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: One time
Cost: < $25 monthly
  • 0 helpful marks

May 1, 2011 (Started May 27, 1998)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: Daily
Advice & Tips: At the beginning, I had to adjust to it. I was VERY conscious about it. Now, I don't know it's there. There has been fewer seizures. And I can actually STOP a seizure.
  • 0 helpful marks

Mar 15, 2011 (Started Jan 01, 2000)

  • Effectiveness
    Can't tell (for Using the Magnet also worked some on Migrains and stress!)
  • Effectiveness
    Can't tell (for epilepsy)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: Daily
Advice & Tips: My battery lasted 11 years and have just had to have it replaced but I would recommend this to anyone with partial seizures it is awesome. Since I received mine in 2000 I have been almost totally controled with very few problems. I handle all areas of my life better and it helps with migraines as well as the deppression some. I am very glad I made the original decision to do this. God is good. Life is finallly wonderful with no out of control seizures. With my new VNS I am hoping to get off of some of my meds this time.
Cost: < $25 monthly

Jul 1, 2010 (Started Jan 01, 2000)

  • Effectiveness
    Moderate (for Using the Magnet also worked some on Migrains and stress!)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: Daily
Advice & Tips: This is an awesome treatment! My seizures were never controlled before I had this. The only reason that it is not a treatment now is that the battery has gone dead and I am awaiting a time when I can afford the replacement or the hospital and surgeons can donate the time and funds for a new model. I do not have insurance thus I cannot afford to have the new one unless the services are donated.
Cost: < $25 monthly

May 16, 2010 (Started Jan 01, 2000)

  • Effectiveness
    Moderate (for Using the Magnet also worked some on Migrains and stress!)
  • Effectiveness
    Major (for epilepsy)
  • Side effects
    None (for Overall)
  • Adherence
    Usually
  • Burden
    Not at all hard to take
Dosage: Daily
Advice & Tips: I expected the device to be a great deal more noticable as I had a very early model It only shows when in the summer I wear low cut dresses which is rare. I even went back to work the very next day. I sang in the choir at the time at church and never even had an issue there it only bothered my voice right after they changed the level that it was set at. Was even more surprised that insurance paid all!
Cost: < $25 monthly
  • 0 helpful marks

Nov 22, 1996 (Started Nov 22, 1996)

  • Effectiveness
    Major (for epilepsy)
  • Side effects
    Mild (for Overall) (speech problems)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: Daily
Advice & Tips: Along with my AED's, now I have better control with my VNS and my medication. Using the VNS allows me to take control of my life, rather than allow epilepsy to control me.
Side effects: speech problems, trouble turning neck due to pain
  • 1 helpful mark
Last updated:
Showing 10 of 18 patient evaluations for Vagus Nerve Stimulation (VNS)