Might be considering the VNS

[seizuregirl]

I guess I had a seizure a short while ago, I was told it only lasted a few minutes and, of course, I wasn't aware of it, and thankfully I didn't loose bladder control.

My only problem with having it done is that I would have to have surgery, and I don't want to have another surgery done for the seizures. Mostly because I messed myself up with the last one.

I know that the VNS won't mess with my short term memory, and it will be like the many surgeries that my Twin has gone through dealing with her medical problems and it would be like what her surgeries do for her, working everyday all day without her feeling anything. Granted it just my neck that they would operate on and not my brain, so I have no reason to be scared. And I would have the strength from her to go through with it if I decide to have it done.

So now I am thinking of what it could do for me, making my life somewhat better, and not just for me, but my family too.

 

[Nakamova]

Hey seizuregirl,

It sounds like you have some questions and reservations about the surgery. It's certainly not an easy decision! Can you schedule an longer meeting with your neuro to discuss the pros and cons?

You should also check out what CWE members have to say. Some have benefited from the VNS, but some have not. The link below will take you to CWE threads that are mention VNS:
http://www.coping-with-epilepsy.com/forums/tags/vns.html
You might also check out this thread from CWE member Arnie, who had a not-so-positive experience:
http://www.coping-with-epilepsy.com/forums/f23/my-vns-experience-22263/

 

[valeriedl]

I was diagnosed with epilepsy in 2003. I was very bad, having around 20 seizures a month. My short and long term memory were very bad too. After a seizure I would forget things that happened that day. In general I'd start to forget things that happened with in a few days. After a seizure I'd be horrible - headaches that lasted for hours and I'd sleep for days.

My neuro tried a ton of different meds before he found some that 'worked' and reduced my seizures a little bit. The meds I was taking were at very high dosages but really weren't helping too much, I was also having bad side effects from them. I was unable to have brain surgery so in 2007 my neuro suggested the VNS and said it would probably help. I could still have seizures and I might still have to take meds though.

It works sort of like a pace maker for your brain. It sends a pulse up to the vagus nerve which goes to your brain every so often, what ever the settings were. If you were having a seizure a simple partial (aura) you could use it on yourself or if you were having a complex partial someone else could use the magnet on you. Using the magnet would send the pulse up right away to possibly stop or bring you out of the seizure.

I talked it over with my neuro and family and decided to get the VNS. It's helped me a TON since getting it.

It took awhile to figure out what settings it should be set out. I do still have to take meds along with it. He had to figure out which meds worked best but was able to get me off of some of them and reduce the dosages of the ones I'm still on. I am still having seizures too but not nearly as many as before, on average 4 a month, but they are nothing like before and the after effects of a seizure aren't anything close to what they were. I notice I have only have more seizures when there's a good bit of stress happening or if I'm not getting enough sleep though. I do still have memory problems but things start to fade away after few months instead of a few days.

Every visit my neuro checks the settings of the VNS. We may need to increase or decrease them, which ever we think should be done. Through the years he's still been able to take me off and or reduce some of my meds.

You may feel a little tickle in your throat when you first get it and when the pulse is increased but it goes away shortly, usually an hour if even that long, until you get used it. The only 'side effects' I notice I have from it is that my breath has shortened and my voice changed, very slightly.

The time when you use the magnet to stop the seizure is during a simple partial, aura. The only problem for me, if you want to put it that way, is that mine are very short and sometimes I don't even have one so I don't know to use the magnet till it's too late. Someone else can use the magnet on you though when you are having a seizure. When someone uses it on me I'll usually come out of the seizure in less than a minute, they may have to use the magnet a few times on me though.

The surgery wasn't bad at all. I have a scar on my chest where the VNS is and a small scar on my throat where the VNS wire is hooked to the vagus nerve. It runs off of a battery that works just like a normal battery. Depending on what the settings are depends on how long it lasts. If it's on higher settings the battery won't last as long as it would if the settings were set to shorter. In 2013 my battery died and I got a new VNS, which is what is done when the battery when the battery needs replaced, and had no problems with that either.

If you have any questions let me know.

 

[seizuregirl]

Thank you Nakamova and valeriedl! The first time I had ever heard of the VNS was because of this website, and my dr was surprised that I had known was it was and how it worked. And after talking to my dr about it I had read the threads again hoping to gain more info and more, well, strength to make a decision!

i don't want surgery again unless it's necessary, but this might be since it could help with both myself and my family that takes care of me, so that might just be what tips the scale towards surgery.

 

[zombelina]

I am considering the VNS as well. My doctor mentioned it, and we are going to discuss it further at my next appointment. I would love to hear what you end up deciding to do!

 

[seizuregirl]

zombelina; I have an appointment in 2 weeks so I'm hoping to have a decision made by then!

I still have to discuss this with my family since I've only given them a brief idea as to what the VNS does and the side effects that can happen to me. (I'm sure they've all looked it up on YouTube already) And I can kind of compare it to the shunts on my Twins brain that take the excess fluid that surrounds her brain and drains it into her stomach with almost no feeling that it's happening at all.

I'm still talking about the surgery with myself because, like Nakamova said, I have some reservations on having another one done, but it could lessen the load that I feel I have put on everyone because of the surgery I did a couple years ago.

 

[zombelina]

Does anyone know if there is a "magnet activation only" (not sure what it would be called) mode for the VNS? My seizures tend to be small and occur in long clusters. Instead of having the VNS set to go off and on at regular intervals, maybe I could just be in control and swipe it when a small seizure first sets in. Has anyone heard of this as an option?

 

[zombelina]

Hi seizuregirl, I agree that taking your time in making a decision is smart. I hope the conversation with your family goes well and that you get some helpful opinions. (As a side note, I have a feeling you aren't burdening them the way you think you are.) I think I remember you saying you take care of your nieces and nephews. That's a huge help!

 

[valeriedl]

Does anyone know if there is a "magnet activation only" (not sure what it would be called) mode for the VNS? My seizures tend to be small and occur in long clusters. Instead of having the VNS set to go off and on at regular intervals, maybe I could just be in control and swipe it when a small seizure first sets in. Has anyone heard of this as an option?

I know you can change the timings that the 'jolt' (if that's what you want to call it) can be set and the strength can be set too. As far as it not going off only if you use the magnet can be set, that's something you'd have to ask the dr.

The purpose of the VNS though is to try to stop seizures happening, wither by it going off on it's own or if you use the magnet. Even though I am still having them it's not even close to how many I was having before I got it.

 

[zombelina]

That makes sense. Thank you for the info!

 

[Topcat]

I suppose everyone has different experiences with the VNS. Mine have been very favorable.
I literally couldn't function without mine. They do need to be set however.
So one thing to consider is who will set yours?

I now have an epileptologist -All he works on is epilepsy. (This spell checker like most won't recognize it as a word.)
He is really busy though. I went there at the first of Sep. when I went to make another appointment they couldn't even find when he had appointments available.
I called today and was told that he booked up until NEXT YEAR!
But they did ask me if I would be willing to see someone else at his office.
I said I was (as long as he can set the VNS), since right now I am really seeing him to have my VNS set up.
Since it's very uncomfortable right after it is set it has to be done incrementally.
I get impatient and tell him "crank it up!"
Once I get used to it other than having a hoarse voice it doesn't much bother me.

 

[arnie]

Hi Seizuregirl. I see that Nakamova referred you to my vns thread. It's pretty long, but it pretty much covers my whole vns experience from when I started thinking about it to when I had it turned off. In a nutshell, I was excited to get it, but it never worked for me at all. For some reason my body didn't like it and I couldn't get it up anywhere near a therapeutic level without some pretty intense pain whenever it turned on. It also made my voice hoarse with each activation (every 4 minutes, if I remember correctly) as well as made me short of breath and caused me to choke if I was eating or drinking, or even if I just had saliva in my mouth. In addition to that it made me have sleep apnea, which I had never had before and which continues to this day even though it's been off for over two years now. Finally, I have a lump in my upper left chest over the generator which is right where a seat belt pushes on it, and for whatever reason it itches. It doesn't itch much, and I just barely touch it for the itching to stop, but it's a reminder that it's always there. Finally, there are 3 noticeable lumps on my neck where the lead attaches to the nerve. It's purely cosmetic and I don't care at all, but some people might. It works well for a lot of people, but I read somewhere that it only works really well for about 30% of people, reduces seizures quite a bit for another 30%, and doesn't work at all for the rest.
Anyhow, I would encourage you to read the whole thread. You will learn a lot of stuff about the vns.

Carry on!

 

[valeriedl]

I get impatient and tell him "crank it up!"

I had one dr put my VNS in but my neuro is the one who I see to have the settings done. He's always told me that it's not good to have the VNS increased too much at one time, usually only two settings at most. I'm not sure what the reason was. On my last visit he wanted to increase one of the settings more than that, I think it was the strength, but the machine that he uses 'yelled at him' (his words not mine) and wouldn't let him do it. So he had to increase it by two then again by one.

 

[seizuregirl]

I had my appointment today and we decided no VNS for now, mostly because Vimpat is working pretty well. But if the seizures come back because the meds can't slow them, I'll think about it again.

I've had only that 1 seizure I mentioned in the 1st post since starting it that has been seen by a family member. I might have had 1, or 2 at night that I don't remember since I haven't had a wet, stinking bed after waking up. But I'm not too worried about that. I just hope it'll continue to keep some of the seizures down.

 

[zombelina]

Thanks for letting us know what you decided! I hope the Vimpat continues to work pretty well for you. Have you had many side effects with it?

 

[seizuregirl]

On a side note, I ran into 1 of the EMT's, or paramedics, (I don't know which one is which) that had brought me to the hospital after the tonic-clonic I had a few months back. He called my name, asked me how I was doing, and if I knew who he was. My ex-boyfriend's best friend.

I do remember a bit of what happened after that seizure still, only because he had asked me then, "Hey! Remember me? I'm [insert his name here]! [insert my ex-boyfriends name here] best friend!"

And I think it had startled me after that seizure enough for me to keep that memory since the last time I had seen him, he was working a crappy job and living in a bad apartment, with small clay pots of marijuana growing everywhere, talking about how he was tired of working and wanted to have money given to him because he deserved it. I had never expected for him to do a 180! (if you can call it that)

And what made me remember him then was his voice, my sister talking to him immediately with no hesitation, he is her one of her ex-husbands friends, (it seems to be about the "Ex's" tonight, huh?) and the tattoos up and down his arms.

 

[seizuregirl]

zombelina, with the side effects, nothing really, the only thing I've had with this is that it's making the skin on my face irritated, becoming more dry than it was before, where as it had only been a couple of small patches on my face dry and flaky, I could scratch a bit of it off with a fingernail, I know I shouldn't do that, but I do the same thing when I get sun burnt, it's made my face feel tight on my cheeks and above my eyebrows and in the mornings I look like I'm dead, flakes of skin falling off my face.

Before my skin was dry, but nothing like this. I had asked him about it and he believes that it isn't from the vimpat after looking up the side effects. I have no problem with it, it's making me drink more water, up to 36oz. a day where before I had maybe a quick gulp with my meds in the morning and/or evening and with the rest of the liquids being soda.

 

[zombelina]

Wow, that is definitely a 180! Going from not wanting to do anything at all to working one of the hardest jobs out there. The dry skin sounds like an annoying side effect, but I guess it's good that it's encouraging you to drink more water. I know some people like that who don't feel a desire to drink a lot of water - it is so weird to me, I am always thirsty! I may try Vimpat next if not the VNS. Appointment is next week.