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Hi, I'm new to this group. Does anyone have a VNS?

Posted by on Apr. 1, 2010 at 8:08 PM
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Hi, I've been through quite a bit with my epilepsy. I am so very fortunate that I don't have them everyday. The most common time I have them is the week before my period.

Through it all, I've been in a medically induced coma for 10 days because I wouldn't stop having them, turned out I had a low white cell count, then I wouldn't come out of the coma, but by the grace of God, I woke 10 days later.  That was 3 1/2 yrs ago.  I also had spinal menigitis while I was 8 months pregnant with my youngest son. I had grand maul seizures all night long. But my son was as healthy as could be.

I've been through the depth wire test, where they drill 8 wires directly into your brain, take you off your meds and then record your seizures to see if you have them on both sides of the brain or not. If I only had them on one side then they would have continued with brain surgery where they would have removed my memory on one side with the hopes of my brain forgetting it had siezures. But I had them on both so they couldn't remove the one side. So they recorded 15 seizures in 3 days with wires directly in my brain. This was done through Barrows Neurological. I had an epitologist. All I was, was a guinnie pig for them.  I also had the Wada test done- thats where they freeze one side of your brain at a time while your awake. They do it with an angeogram.  They then went on to allow my dilantin level to get to 54 which left me very toxic and very sick. I lost 90lbs. And eventually my job which has led to no health insurance.

I'm still on a 1 yr disability through my work and am waiting to hopefully be approved for disability. I went on to ry one more thing in this past year. They talked me into having a vagal nerve stimulator implant. It was supposed to help and you have a magnet that you run over the implant in your chest which is attached to the vagal nerve in your neck, behind your vocal cords.

But this VNS has been nothing but another nightmare especially with no insurance. So there you go. My basic story.  I never had seizures until I was 26 yrs old. I already had 2 kids. I used to drive until I was in a horrible accident when I had my 2nd seizure. No one told me I better not drive. They said, you have epilepsy. Take this medicine. 

 It was 2 trucks, a minivan, a car and a motorcycle and it was a 6 way intersection. Grand Ave, if your familiar with Arizona. Fortunately, Thankyou God, once again, No one but me was hurt. I even had my 6 yr old daughter with me. I just had 21 stitches in my eye, and we didn't have a truck anymore.  And I don't drive.  That was 15-16 yrs ago.

I hope this is what you meant, by kinda introducing ourselves. I'm very much interested in other mother's experiences.  It's hard having epilepsy on everyone in the family. Especially the kids.

 

by on Apr. 1, 2010 at 8:08 PM
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Replies (1-8):
kmichelleg
by New Member on Apr. 6, 2010 at 1:43 PM

Hi, I guess that must mean no-one has a VNS vagal nerve stimulator. I would like to compare experiences. My is very bothersom. Thanks though.

Nammers
by New Member on Apr. 7, 2010 at 4:48 PM

 You've been through, so much!  I had do idea what 'VNS' was till reading your post.  I also did not begin having seizures (at least not recognized or knowing what they were) till I was in my late 20's.   Thankfully I have them nearly 100% under control with meds.  The first 4 years or so after being diagnosed I still averaged a couple grand mals a year and simple partials on and off.  For the past 3-4 years I've only had the occasional issue with Simple Partial Siezures.  I had 3 children at the time I was diagnosed and have since had my 4th (last) child, while on meds with no issues.  He is 2 now.  Anyway - I just wanted to say hello!  

Nams 

pyrateprincess
by New Member on Jun. 25, 2010 at 4:17 PM

this is a few months late..but yes, i do in fact have a VNS. it is turned off at the moment because i was supposed to have an mri done but no one around here want to risk the thing melting or something while in there. I've had seizurs since i was born. they were diagnosed when i was 5. I've been on medication after medication and they are still not under control. i have petit-mal seizurs where i basicly "space out" for a few seconds. this happens at least 3 or 4 times a day. The vns hasn't really given me any problems but it hasn't really helped me all that much either. I'm thinking about getting it removed but that would entail surgery and i really don't want to go through that again. -_-

krbarrett
by Member on Jun. 26, 2010 at 8:43 PM

I don't have a VNS but I was diagnosed with seizures in my early 20's and have grand mals about once to twice a month.  I am sorry you have been through so much but you are right about thanking God for the little blessings atleast.  I do the same.  Sorry I couldn't been more help about the VNS though. :(

shagany
by Member on Jul. 14, 2012 at 12:02 PM

 

 

Hi, I'm new to the group too.  I read what you wrote, you have been through a lot.  Doesn't it make you mad that they told you to drive, the same thing happenede to me.  I told them too, I said I was having seizures, but they said keep driving.  I crashed into 3 cars.  Do you have insurance or it just won't pay for the vns?  I have that but I'm on disability, are you on disability.  It is a nightmare not driving, do you feel stuck in the house without driving?  Sara

clarasmommy08
by Member on Feb. 8, 2013 at 12:16 AM

I have one!!!

clarasmommy08
by Member on Feb. 8, 2013 at 12:18 AM

I didn't get diagnosed with epilepsy till i was 19 (go figure... stupid doctors), because i dont have grandmal seizures... anyway i was on pills for like 2 years before i finally let my fiance talk me into getting the VNS and oh my goodness it makes a HUGE HUGE HUGE difference. I still have stress seizures occasionally but i was having like 5 seizures a week.... my only complaint is that my voice tone changes when it kicks in... its gotten better but i can't sing high notes anymore when it kicks in :P. if you wanna talk, feel free to add me as a friend and message me

shagany
by Member on Feb. 10, 2013 at 9:33 PM

I applied for disability and it took a couple of years, but it will come.  You know you could get temp disibility?  Before I had disibility I was on temporary.  That worked pretty good.  I had a car accident too, and it was so grateful that I didn't kill anyone.  It's so frusterating not driving, but I'm affaid I would kill someone.  How is your short term memory?  Mine is horrible b/c of my coma. I'd like to here what meds people are on, I like to hear about drugs people are on.  Actually, I screwed up my meds tonight so I'm a little confused, so I have to go, before I write something that makes no sense.  Sorry if this makes no sense

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