VNS questions

[Kimmie Milburn]

Hey guys, this is my first time here, Im excited to jump in

A little back history

My son was diag is 2004 with Epilepsy, he had his first seizure March 4th 2004 and went into status and was in ICU for 3 days, that's how we found out he had Epilepsy, out of the blue no other issues, good grades in school, athlete etc...

so fast forward...

We have tried several drugs and they weren't always 100% controlling his seizures, his seizures started in increase in frequency and duration and in 2010 he had his first complex partial than generalized, which resulted in a concussion and some prolonged post-ictal issues... so my son asked about surgery, he was 16 at the time and his goal was to drive and be seizure free.. we opted for the surgery as we were told he had a very good chance of being seizure free without meds....

we had the surgery in March of 2011 and he was seizure free till Christmas Day when he started having seizures again..... so we upped meds and have been doing so for a year now...

pre surgery he was only on Depakote 1500mg 2x daily

After surgery we are now on
3000mg of Depakote
3000mg of Keppra
400 mg of Vimpat

Also pre surgery he could miss meds and not have seizures, when we would do VEEG it would take him sometimes 2 weeks before we would see a seizure after he stopped meds..

Now he misses one DOSE and he generalizes from his complex partials and the last tonic clonic he had to be sedated because his heart rate started to sky rocket and it went on for 14 minutes...

so last week this is after med increases every 2 months since September he had 7 seizures....

back to testing and they are I know either going to up meds AGAIN or recommend the VNS..

so if youve stuck with me thus far can you guys or anyone that has the VNS, heard about the VNS good and bad, I want it all

Tell me about the VNS please......

Thanks so much I truly appreciate it

We go in tomorrow for new EEG results and to discuss what is going on...

thanks so much Kimmie

 

[Nakamova]

Hi Kimmie, welcome to CWE!

First off, sometimes the meds actually cause seizures, so it's possible that upping the meds is making things worse. See for example http://www.coping-with-epilepsy.com/forums/f23/can-keppra-actually-cause-you-have-seizures-2393/ and http://www.coping-with-epilepsy.com/forums/f23/can-keppra-cause-seizures-4243/

As for the VNS, I haven't tried it but it seems to be a mixed bag for CWE members. The link below will take you to all CWE threads tagged with "VNS":
http://www.coping-with-epilepsy.com/forums/tags/vns.html
Here's a recent such thread:
http://www.coping-with-epilepsy.com/forums/f23/vns-journal-ongoing-thread-19502/

You might also want to check out this VNS forum run by a CWE member:
http://www.vnsmessageboard.com/

I hope you and your son and his doctors are able to come up with a treatment plan that brings seizure control and relief.

Best,
Nakamova

 

[Cint]

Kimmie,

I also had brain surgery for epilepsy and was only seizure free for 14 months. The seizures came back with vengeance. We tried numerous meds. Finally had the VNS surgery back in 1997. After finding different pulse widths and settings, we were able to find something that worked for me. It does cause shortness of breath. I'm one of the ones that has had good record with it. I had my 2nd battery replacement this past April and so far have been seizure free. If your dr. hasn't already mentioned it, check out this website:

http://us.cyberonics.com/en/vns-therapy-for-epilepsy/patients-and-families

May you and your son find a good treatment that will have him seizure free again!