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VNS

Thu, 06/23/2011 - 12:38
Hi everyone.  I wanted to hear from those of you who have had VNS and the success or failures that you may have experienced.  I have a 12 year old son who has been having seizures since the age of 7.  Mostly partial complex but many do tend do generalize.  He has had numerous episodes of status epilepticus the worst of which was 12 hours.  Luckily he was already in the hospital and was airlifted for more specialiized care, medication, and intubation.  He is currently on Dilantin 100 mg in the AM 130 in the PM, Klonopin 1 mg TID, Zonegran 200mg AM and PM and Lamictal 200 in the AM and 300 in the PM.  Also has Diastat 10 mg and versed 2 mg for clustering.  He was stable for a long time and recently (April) began having up to 3-4 seizures a day.  Doctors are recommending adding more meds or doing VNS.  Not sure which way to go and would like some input.  Also seizure surgery is out for us as his seizures result from both temporal lobes and both frontal lobes which is why they are so medication resistant.  Thanks in advance.

Comments

Re: VNS

Submitted by gold on Thu, 2011-06-23 - 17:31
Hi I am 36 have had 2 brain surgeries 5 vns surgeries.  I have both grand mals and partial seizures I had my first seizure at age 14 and things got better however then was in a near fatal car accident where I was a passenger and that made it so I couldnt work again I have tried pretty much every med possible the brain surgeries couldnt work for me due to the fact the place that could fix it was in a tricky area so I then tried the vns well it really has helped me a great deal and I have never regreted trying it if u have any questions pls feel free to ask :)

Re: VNS

Submitted by Nerak95 on Thu, 2011-06-23 - 19:41

I would exhaust all possibilities trying other AEDs Banzel, Vimpat and Potiga (Potiga should be available at the end of the year) before taking an invasive step as the VNS.   Clobazam is also another possibility. It has been FDA approved but I don't know its release date. 

Although the VNS didn't work for my daughter, it has been successful for many people.  My daughter had an issue with the VNS and had to have it removed.  Although her neurosurgeon was able to remove the coil (she had the device implanted for seven years) not all neurosurgeons will agree to remove the coil for fear of damaging the nerve or the vocal cords.  My fear had always been that if there was ever a situation where my daughter had to have an MRI and a tech was not informed that she had the coil in place, it could prove to be a fatal injury.  That's the main reason why you should exhaust all medication options first.

I've got a couple of comments to make.  Since there has been recent seizure breakthrough, has there been any change in medications in regards to generic forms?  That could be an issue.  Also, with the combination of the drugs, there might be moderate interactions with one another.  Dilantin is a funny drug that can have fluctuating levels.  I know when my daughter was on it, it was high one time and low another time despite both being at trough levels.

At any rate, if you do introduce another drug, PLEASE, take another one (or two) away.  While two or more drugs are needed to control various types of seizures, when it's apparent that there isn't adequate seizure control with the current medications, it makes no sense to keep people on medications when they don't work.

Karen 

I would exhaust all possibilities trying other AEDs Banzel, Vimpat and Potiga (Potiga should be available at the end of the year) before taking an invasive step as the VNS.   Clobazam is also another possibility. It has been FDA approved but I don't know its release date. 

Although the VNS didn't work for my daughter, it has been successful for many people.  My daughter had an issue with the VNS and had to have it removed.  Although her neurosurgeon was able to remove the coil (she had the device implanted for seven years) not all neurosurgeons will agree to remove the coil for fear of damaging the nerve or the vocal cords.  My fear had always been that if there was ever a situation where my daughter had to have an MRI and a tech was not informed that she had the coil in place, it could prove to be a fatal injury.  That's the main reason why you should exhaust all medication options first.

I've got a couple of comments to make.  Since there has been recent seizure breakthrough, has there been any change in medications in regards to generic forms?  That could be an issue.  Also, with the combination of the drugs, there might be moderate interactions with one another.  Dilantin is a funny drug that can have fluctuating levels.  I know when my daughter was on it, it was high one time and low another time despite both being at trough levels.

At any rate, if you do introduce another drug, PLEASE, take another one (or two) away.  While two or more drugs are needed to control various types of seizures, when it's apparent that there isn't adequate seizure control with the current medications, it makes no sense to keep people on medications when they don't work.

Karen 

Re: VNS

Submitted by diana-gaidheal on Mon, 2011-07-11 - 03:40

Hi, Karen - I'm 43 and have had epilepsy for 30 years. I've tried 8 meds over the years. I know that's not much, but I finally found an epileptologist who told me that if a patient doesn't respond to 3 meds, then they won't work. I had my left hippocampus removed in 2005 which helped, but it didn't stop them.

I got the vns last November. It was turned on in January. I've only had seizures at night for about a year, so before the vns was put in. Sometimes the magnet works, sometimes it doesn't, so my hubby says. They say that the longer the device is working the better it gets! So, we'll see... Good luck and sure hope things get better for everyone.

Hi, Karen - I'm 43 and have had epilepsy for 30 years. I've tried 8 meds over the years. I know that's not much, but I finally found an epileptologist who told me that if a patient doesn't respond to 3 meds, then they won't work. I had my left hippocampus removed in 2005 which helped, but it didn't stop them.

I got the vns last November. It was turned on in January. I've only had seizures at night for about a year, so before the vns was put in. Sometimes the magnet works, sometimes it doesn't, so my hubby says. They say that the longer the device is working the better it gets! So, we'll see... Good luck and sure hope things get better for everyone.

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