Any experience with VNS and/or Phenytoin?

[kirsten]

I've now exhausted all mainstream anticonvulsants and can't tolerate them because of side effects and allergies. My neuro now wants to try to motivate to my medical aid for VNS, which I know very little about. From what I have read online, 77% of epilepsy patients have theirs turned off after getting the implant, so I was wondering if anyone had had any experiences, positive or negative, with it, or even knows whether the research I turned up is accurate?

Also, he's put me on Dilantin in the meantime and the long term side effects look pretty hectic. Again, if anyone has experiences with it, I would be grateful to hear them.

 

[arnie]

There have been a number of people who have had the vns implant, including me, just this morning! Obviously, I can't know yet how it will work for me, but from what I have read, and the people I have talked to (many of them on this site) the success rate is much higher than what you have heard. I would really encourage you to look into it more. I don't think the research you read was accurate.
As for phenytoin (Dilantin) it has a number of long-term side-effects, as you know, and would probably not be the best choice. (I was on Dilantin for about 15 years.)
Read my thread that I started called "my vns experience" and that will give you a bit of an idea and the names of more of the members you can contact to ask about it. Best of luck!

 

[Dolores]

I've taken Dilantin since I was first diagnosed with epilepsy over 40 years ago. There are downsides: the side-effects. Then again every AED I've read about has side-effects. I have a wonderful GP who helps me manage the side-effects keeping a watch on all the details. Most importantly he works with me rather than telling me - we both manage my epilepsy drug regimen (I also take phenobarbital for almost as long).

There is one terrific upside: Dilantin controls my seizures :woot:. Which is what I really want of an AED. And it is cheap enough that I can buy a years supply using my own money and just pull it out of my Flexible Spending Account. I do a lot of traveling and don't want to be tied down to having to remember to fill my prescription every few months. I've done this for over 30 years and now it's just a comfortable habit.

If Dilantin controls your seizures then all the rest can be managed. My gums are in great shape after my dentist mentioned using an electric tooth brush, my memory is not great but I've learned to cope and automatically right down anything I need to remember, Dilantin blood levels tend to fluctuate per the nature of Dilantin but I know the signs now and, after getting a blood test, can adjust my dosage appropriately until I can talk with my doctor.

I know a lot of people diss Dilantin but there are problems with everything. Dilantin controls my seizures. I know how to deal with the obvious side-effects and my doctor is watching out for all the others. So I say don't get overly worried about what might happen just watch and see if it works and learn what you need to do to protect yourself.

Wishing you the best of luck!

 

[Cint]

Hi Kirsten,

I replied on Arnie's post about the VNS this morning and am happy you were able to check out the cyberonics website. I've had E for over 30 years and have tried many meds (including Dilantin) and had brain surgery, so the VNS was a last resort for me. I didn't really have any problems with Dilantin. It didn't control my CP seizures. I did have some bleeding of the gums, tho.

I have my 2nd VNS now and it is at the highest setting. It charges every 3 minutes for 7 seconds. Usually, they will set it for 5 seconds every 5 minutes. But mine is on the rapid cycling because I have difficult refractory epilepsy. It does effect my voice when it charges and some people have a difficult time hearing me as I speak. Sometimes I will cough when it charges. And sometimes it has made me wheeze. But for me, it beats seizing.

Good luck on your decision.

 

[kirsten]

Absolutely nothing has treated my complex partials, so I've never really been too hopeful about that bit. My main concerns are to prevent further damage to my cognition and to keep tonic clonics away. I would also appreciate control of my myoclonics because they can be pretty uncomfortable. I'm curious about this voice change. My neuro did his best impression and that was pretty funny but can you describe what the voice change is actually like? Also, is the wheezing limited to recharging or is it a chronic thing?

 

[Belinda5000]

I've had E for 50 years I had a RTL in 1982 it didn't help at all , my seizures started get worse as I got older. I've had no luck with drugs controlling me I'm refractory and I've take 22 to 23 different AEDs. I got the VNS in 2000 At first it was working great for me 2 wks after I got it they came out with the 2nd model.I had the battery changed 3 times and now is turned off if it's taken out get infected.

 

[Cint]

I'm curious about this voice change. My neuro did his best impression and that was pretty funny but can you describe what the voice change is actually like? Also, is the wheezing limited to recharging or is it a chronic thing?

For me, the wheezing is when the VNS is recharging and only when I'm out exercising, riding my bike, etc. Initially, it was worse than it is now. I don't experience it much anymore.

The best I can describe the voice change is, it sounds sort of like a child whisper for a few seconds. If I am speaking during this time, I usually do have to repeat myself. But I get used to it.

 

[kirsten]

I wouldn't mind those two things too much. I did read that VNS effects improve over time. It's sounding really good to me at the moment. I'll have some time to look into the research tomorrow.

 

[valeriedl]

I just got my second VNS put in a few weeks ago. The battery died in the first one which was why it had to be replaced.

If you can name the medicine and dosage I was probably on it before I got the VNS and nothing really seemed to helped which is why my neuro suggested getting one.

I've gone from having around 5 bad seizures a week to about 5 not so bad seizures a month. For me this a great improvement! I am still taking meds to however. I've had to have the dosages changed from time to time but it's usually to a lower dose.

It's not going to start working right when you get it. You have to wait a little while after the surgery to have it turned on then the settings need to be figured out. If you have to take any meds with it then that need figured out too.

It took about a year go get mine working how it should and what meds. Even after that the settings needed to be adjusted from time to time and as I said the meds, which I have to take, needed to be adjusted too.

All in all it's been good for me.