Thinking of pulling the trigger on VNS...

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resaebiunne

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Well, it's been almost two years in my drug search and it seems I've somewhat found my "magic cure", although still having some breakthrough seizures. I've tried various combinations of Lamictal, Vimpat, Keppra, Depakote and Topamax. Finally settled on Depakote and Topamax. However it comes with some caveats: 1) I had to quit my job because of depression, so major stress reduction factors into it. 2) Seems the Topamax is responsible for giving me this horrible diarrhea.

Now with regards to item 2, I am trying fiber for now. We'll see how that goes, but with anything else, it's one more pill to take, and I'm on a "minimization" plan. The fewer the drugs the better. That said, I am not a fan of diet modifiers or "alternative diets" or any of that ... fancy stuff. Not my cup of tea. Please don't even try to recommend it to me! The simpler the better. Especially right now, I don't have the money to buy fancy foods, cooking is not something I enjoy doing, and I don't have the ability to get the grocery store on a whim.

Anyway, also, the VNS may factor into my depression. I need to talk to my therapist and psychiatrist about it also. I see them in a few weeks. I don't think there will be any issues there. It will be interesting to hear their reactions.

My doctor keeps bringing this up, and I've done some research already, so I know what's involved. The question I have at this point comes down to: "How will it help ME?" There's only one way to find out. My next epileptologist appointment isn't until April so things won't take off until then at the earliest.
 
High fiber can actually make diarrhea worse for some people, so proceed with caution.
Have you consulted with a nutritionist or dietician? Not saying you should, but it might be helpful.

A friend of mine struggled with diarrhea for a year, then discovered that eating full-fat yogurt every day helped. This is only offered anecdotally, I know everyone's different when it comes to the gut microbiome...

Good luck with any next steps!
 
After several years of unsuccessful treatment I asked my neuro to turn the thing off. He encouraged me to "Give it more time to work". His advise didn't make any sense to me but being the good patient that I was I didn't argue with him and just did as I was told. A couple of years later the VNS nearly killed me. Read all about it in The Danger Within Us.

If I were you I'd pull the trigger on VNS as quick as I can.
 
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dennis100 said:
After several years of unsuccessful treatment I asked my neuro to turn the thing off. He encouraged me to "Give it more time to work". His advise didn't make any sense to me but being the good patient that I was I didn't argue with him and just did as I was told. A couple of years later the VNS nearly killed me. Read all about it in The Danger Within Us.

If I were you I'd pull the trigger on VNS as quick as I can.
Click to expand...

I'm curious, why do you suggest I try the VNS sooner despite it's flaws? Otherwise, yes, now is the time to do this, while I am free of obligations from work.

I will consider picking up a copy of this book, but I am skeptical... Anyone can write a book. For one, I am skeptical of the people on this forum who recommend the book, because they typically are the ones who have negative experiences with the VNS. You don't see the ones with positive experiences recommending the book! And second, who is the author of the book? Does she have research experience? Seems to me the author had a clear bias before even writing the book! What good is that?
 
I think dennis100 means "pull the trigger" as in shoot the idea down or have it turned of -- I think he misread your post to mean that you had already committed to VNS or had already had it installed.

As you know, some CWE members have had positive experiences with the VNS (such as Bigman), some have had mixed results and some have had negative ones (such as dennis100). So it's important to make your decision (whichever way you go) after asking a lot of questions and discussing it thoroughly with your neuro.
 
I have seen Dennis100's posts on the vnsmessageboard website and they are unbelieveable. Does not anyone actively moderate that forum anymore?

Thankyou for making your point.

At this point, I am more interested in arguments supporting the idea of VNS implants than arguments against them. Even searching for "VNS Success stories" turns up "VNS Horror Story" as the first result! Let's get real here.
 
Thanks Nakamova, I misread the post! All of the asystole episodes surly caused some brain damage. I saw "pull the trigger" and thought "pull the plug". It took a miracle for me to be alive today and I didn't want resaebiunne to go through the same thing. I'll back off on my VNS related posts because my blood starts to boil when I write about it.
 
I had a VNS put in about 4 years after I was diagnosed with epilepsy. I had to have another one put in 6 years later because the battery died. I believe my neuro said that the battery lasts on average 10 years but depending on how high the settings are set on the VNS depends on how long the battery lasts and they can't just replace the battery they have to put in a whole new one.

It helped me a ton after I had it put in. I'm still having seizures but not nearly as many and they aren't nearly as bad. I'm still taking a good bit of meds too. It took a little while to figure out which meds worked good with the VNS but I'm not taking as high dosages as I was before.

I have read that the VNS can help with depression too but don't think I've ever had problems with it so can't give you any advice on that. I've recently been diagnosed with cancer and I think I'm the only one who's not sitting in a corner crying about it, I'm looking on the positive side not the negative. I'm not as worried as as when my next seizure is going to be like everyone else it - When it happens it happens. I know I'm always making people laugh, even about the cancer and seizures, but I'm pretty sure I've always been that way. I don't know if the VNS has had anything to do with that or if that's just the way I am.

The only thing I don't like, and many of my drs do too, is that I can't have an MRI now. I had to have screws put in my back a few years ago though so I can't have an MRI now anyway.

I guess you could say the VNS is just like anything else - You don't know if it's going to work for you until you try it. So I can't say "You should get one it will be great for you" or "Don't get one it won't help you at all".
 
Hey dennis100,

I understand if you're deeply affected by the trauma you have experienced by the VNS, but I don't think that gives you the right to spam forums about your opinion. You could spend your time more productively in other ways actively contributing to the medical community.

I *AM* grateful for your opinion, don't think that I am not. It is an eye opener. I just think you are a bit ... uh ... disenfranchised by what you perceive to be a favored outcome for you in response to your opinion.
 
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