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vns
Sat, 03/29/2008 - 19:38I have had epilepsy for many years. One year ago I had the vns implanted. I am still having seizures. It seems to work sometimes but not always. They have me on so many meds. I take keppra, lamictal, and klonpin-clonazapam. Now they are having me check my blood sugar. Does any one have suggestions or if they have better use of meds when having the vns. I am at a point now I just can't take it anymore. I want my life back and really think something should be done. I have had some people request brain surgery but others say do not even think about it. Any suggestions.
Jacki
Comments
Re: vns
Submitted by tonialpha on Sat, 2008-03-29 - 21:31
Hi,
I understand your feelings only too well! I had 2 brain surgeries first to control seizures. My seizures came back. The VNS was suggested by my doctor at Johns Hopkins in 2000. At first it seemed like it subtly helped. I then started having other problems w/ asthma. Now my asthma is under control. I get flurry seizures but the magnet helps and stops most of the seizures. I take liquid Valium when the magnet doesn't work. I take Keppra, Zonegran and Klonopin, along w/ Valium as needed. The VNS does help. Mine goes off every 3 minutes. My magnet has been changed. It does help. I still do not drive. I have 2 teenagers. I am always busy. I walk or jog 2 miles a day. I would love to work again. My friends say you have a great excuse to be home and watch your children grow! My VNS makes me lose my voice this time and it is at a low setting this time and the Epileptologist said this is normal. I was at the highest setting before. He told me to start singing again in choir. HA HA! He said tape the magnet on and sing! I have walking seizures, I might do it and sit my self in the back! The VNS does help me moderately! I wanted him to pull it out and he said how many times have you had status and been hospitalized? Only once a year not once a month! It really has helped me, I still end up in the ER but I get to leave the hospital not be admitted! So the VNS has helped me!
Hi,
I understand your feelings only too well! I had 2 brain surgeries first to control seizures. My seizures came back. The VNS was suggested by my doctor at Johns Hopkins in 2000. At first it seemed like it subtly helped. I then started having other problems w/ asthma. Now my asthma is under control. I get flurry seizures but the magnet helps and stops most of the seizures. I take liquid Valium when the magnet doesn't work. I take Keppra, Zonegran and Klonopin, along w/ Valium as needed. The VNS does help. Mine goes off every 3 minutes. My magnet has been changed. It does help. I still do not drive. I have 2 teenagers. I am always busy. I walk or jog 2 miles a day. I would love to work again. My friends say you have a great excuse to be home and watch your children grow! My VNS makes me lose my voice this time and it is at a low setting this time and the Epileptologist said this is normal. I was at the highest setting before. He told me to start singing again in choir. HA HA! He said tape the magnet on and sing! I have walking seizures, I might do it and sit my self in the back! The VNS does help me moderately! I wanted him to pull it out and he said how many times have you had status and been hospitalized? Only once a year not once a month! It really has helped me, I still end up in the ER but I get to leave the hospital not be admitted! So the VNS has helped me!
Re: vns
Submitted by numpers on Sat, 2008-03-29 - 20:15
Hi there. I am a new poster. My daughter who is 16 (E for 11 years after Encephalitis) had a VNS fitted 2.5 years ago. She and we think that things have gradually improved although she still has seizures.
I think the general medical opinion of VNS is that it needs 2 years at least to reach its potential. Some Docs think even longer (others of course don't believe in it at all).
Understand your frustration. I assume your Doctor has been regularly adjusting the VNS frequency ?
Hi there. I am a new poster. My daughter who is 16 (E for 11 years after Encephalitis) had a VNS fitted 2.5 years ago. She and we think that things have gradually improved although she still has seizures.
I think the general medical opinion of VNS is that it needs 2 years at least to reach its potential. Some Docs think even longer (others of course don't believe in it at all).
Understand your frustration. I assume your Doctor has been regularly adjusting the VNS frequency ?