VNS Journal. (Ongoing thread)

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Have you noticed if your seizure activity is changing (increasing or decreasing) since the VNS was turned on?
 
Hey Bernard! Actually, from the first time it was turned on, my seizures have doubled. I went from 10-15 episodes a month to 20-25. And as the voltage increases it becomes more annoying. As in it starts to really mess with my throat and chest. -Jeff
 
Well, poo. Hopefully things will turn around as they test different settings.
 
The way I see it, is that it is implanted. I might as well see how goes. I have nothing to lose. If it works great, if it doesn't I am okay with it. After 20 plus years of epilepsy, I am starting to get good at it. lol -Jeff
 
June 3) Back again finally! Went to the Doctor and had it turned up to 1.25v from .75v. It rises to 1.5v when activated. If this doesn't help it will be coming out. The new voltage has turned my voice raspy again and actually hurts a bit when it goes off. The coughing a little bit I can deal with, but now I feel a pulse in my ear. Huh? I know that the VNS effects everyone differently, so I'm sorry if I am scaring anyone. I am still having the usual amount of seizures per month, and if this isn't working, it is nothing more than an annoyance to me. I return to the doctor the second week of July. A month an a half for this thing to prove itself. If not, you may find a VNS device on Ebay. -Jeff (p.s. I will keep you posted as and if the feelings subside.)
 
So sorry the results have been so disappointing. I hope the docs make a note of what you've been enduring, so there's an accurate record of VNS results.
 
June 5) Okay my friends. After my doctors appointment Monday I had a grand mal and three petite. Yesterday I had three petite mals. I had an emergency appointment to turn it off, and the doctor is calling the other doctor of whom put it in to have it removed. Back to Monday. I was over at my cousins, just chatting in the kitchen. Started to feel an aura come on so I decided to go outside to try and breathe and walk it off. Before I could reach the door I blacked out. Apparently I hit the Chevy Blazer with the full force of my head. When I came to, my cousin made sure I didn't get up and my wife was holding my hand. I was trying to talk, but as you all know that is one of the most difficult things because you cannot ever talk right. @ a half our later the ambulance showed up and hauled me off to the hospital. Took about a half hour at the emergency room to talk right. After I came home I had three more petites. Yesterday I had more. The night before I had to keep the VNS magnet over the top of it to keep it from going off. FYI the magnet does not work very well. If it is not held in the perfect position it will go off every time you move the slightest bit. I ended up taking a belt and the magnet and belting it to my chest. So as of right now I am slowly getting back to myself. Doc upped my meds temporarily to get my levels up higher. Last two days have been a nightmare. Ugh -Jeff
 
Oh Lord. Sounds like the sooner you get that VNS out of you the better. Hope you feel better soon. How's your head? (And how's the Chevy blazer?) :)
 
The Blazer is still not talking to me! lol It is fine but I think I have a concussion. As far as the magnet, no need to worry now, it is off. Thank God. As the voltage goes, the higher it goes, the more it really becomes an issue. It took @ 2hrs after it was upped that I had my grand mal. As it would go off, it made me lose most of my hearing in my left ear, made me cough and hurt. I tried to deal with it, but I couldn't. Some people have luck and can tolerate it. I was not so lucky. -Jeff
 
June 13) Back to the hospital today. Due to my seizure last week I must have done some damage to my neck. I have to have a CT done. My neck and lower skull are bothering me a lot. I also found out that the doctor that implanted the VNS is scheduling surgery to remove it. YEA!!! I will keep you posted on the results. -Jeff
 
Hope the damage isn't too bad, just something temporary that will heal soon.
 
Wow, I am sorry that happened to you. I hope this is the catalyst to make things better for you.
 
Hey everyone! Had my x-ray and ct done. Just waiting on the results.

The people around me are wondering why I am not upset or bothered by the fact the VNS did not work. I continue to have seizures and I am okay with it. The grand mals can go away, but as many of you know, you have seizures so long that they become part of your daily life. Epilepsy is just something that happened. I was with my wife at a local concert and we were with some friends, and as we were hanging out I was talking about my condition and joking about it. I left the group for a minute and they told my wife that my jokes were funny about it. They said that they were glad that I didn't have epilepsy. She told them that I actually did. They could not believe that I was light-hearted about it. My attitude about it is this: I have had it so long that I and those around me are use to it. I may have one grand a year and @ 10 or so petites a month. There is zero reason to be pissed at my condition. I am not bitter or angry. It's life. And I think my life is pretty darn good. Even though nothing can stop them, life goes on. It does suck that some of the things I used to do I can no longer, but I am still here. So I hope that none of you feel closed in because of epilepsy. Remember, the biggest sin against life is to not live it to the fullest. With adding all of you to my life, it has only gotten better. Thank you all, and I will let you know what they find out. -Jeff
 
June 18) Got the news! It was just whiplash from my head hitting the Chevy Blazer. I guess that's good news.lol I am currently working on getting the appointments set to have the VNS removed, so it should not be much longer. Yeah!!! -Jeff
 
screaminghelix said:
... I may have one grand a year and @ 10 or so petites a month. ...
Click to expand...

Considering what life was like when my wife was having TCs and every week and multiple SPS/CPS every day and couldn't remember the names of our children, that is very manageable.
 
Screaminghelix, Thank you. I believe as you that life is to live.
Yeah, i got problems. And choosing to not despair makes life even funner. You are an inspiration.
 
Thank you all for your great comments. I truly appreciate all of you.

June 28: Per my neuro, he has signed off on the removal. The surgeons office has called us and asked me to try having my Dr alter the settings. lol We told them that we have and they gave us a list of all the things to try. We have tried all of them. Trust me. They said I should see my neuro to and try to work on the settings. Three times we have talked to this office. My dr has already signed off on the surgery and they are still not wanting to remove it. I told them that either they can remove it or I am. I also stated that with them removing it I will have less visible scars. She is going to talk with the rep now. So my point is this, remember that when you have the device put in, you will have to wade thru hell in order to get it removed if need be. As far as I am concerned, they can leave the device in, but need to remove the battery and connection to my vagus nerve so I can at least try and get my voice back. I will be playing telephone tennis for a little bit, but I promise to keep you in the loop. Yay! -Jeff
 
Three times we have talked to this office. My dr has already signed off on the surgery and they are still not wanting to remove it.
Click to expand...
Sounds like the surgeon's office is ineffectual or malfunctioning and needs to be removed.:)
 
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