my vns experience

[arnie]

Well. it's been 4 days now. Not too long, but I'm still feeling really good about this. Objectively, I've had 3 smallish seizures, but I've also slept better than I usually do. Subjectively, I just feel better overall. Maybe it's because something is really happening as a result of the vns, maybe it's a placebo effect, maybe it's some of both. Hard to tell. In any case, I'm feeling really good about the decision to get this thing implanted in my body and having it jolt my brain every five minutes. The only negative thing at all is the small tickle in my throat and the slight hoarseness I have while it's on. It's a bit of a nuisance, and my wife doesn't like to hear it. She said I should stop talking when I feel it kick on, but I told her that I mostly won't be able to do that. I was talking to a friend at the hardware store today and she said that she noticed it and that it made her want to clear her throat for me. I've decided that I will wait about two months, until the voltage is ramped up to 1.0 mA, and then see about very slowly reducing my dosage of lamictal. For now, at any rate, that's the plan. I'll also be switching neurologists in about 2 months, so that will be interesting. Cheers!

 

[qtowngirl]

:hugs:

glad to hear you're happy bud. so, when you say 'smallish' seizures do you mean like mild simples? i remember a number of them where they're so minor you can 'almost' stop them or at the very least they come and go in seconds and don't make you feel wasted after.

 

[arnie]

:hugs:

glad to hear you're happy bud. so, when you say 'smallish' seizures do you mean like mild simples? i remember a number of them where they're so minor you can 'almost' stop them or at the very least they come and go in seconds and don't make you feel wasted after.

I can never stop mine after they get started, but these were small enough that I didn't feel that I had to lie down or sit down, and I didn't get that paleness and cold sweat sort of feeling that the bigger ones can give you. I'm sure you can relate, being a simple partial seizure soldier and all that, right? I would also like to think that the subclinicals have gone away or at least tapered off, but that's hard to know for sure. I haven't had any of the quick "gasp" ones that are there but too small for me to record as true seizures. My memory flashbacks seem to have decreased, too, but it's maybe a little too soon to really know. Onward, my spsq!

 

[valeriedl]

It takes a little while to get used to the side effects of it. By side effects I mean the tingle in your throat and the hoarseness, plus maybe a few other things. I still clear my throat a good bit and I think that's not going to go away because I've done it since I've got it. Every time the voltage is increased these things will probably come back again but you should get used to them again after a while.

Glad to hear what it's doing for your seizures! Sounds a good bit like what it did for me. Still having them but not as bad or as many.

If I know a seizure is coming on and I use the magnet it usually stops it. I may feel dizzy and not right (don't know if you know what I mean?) I'll use the magnet. I may feel like that for a few minutes after I use it but I don't black out.

There are times though that by the time I realize that I'm having those feelings it's to late to use the magnet myself, and sometimes I don't have those feelings I go into the seizure and black out. Someone will use the magnet on me and I come out of it a lot quicker that I used to.

However before I got the VNS I never had those feelings at all, just go right into the seizure and black out, so that's a real plus for me!

It took the neuro a little while to figure out what the right voltage and timing for it to go off to work really good for me. Even now he still has to adjust it sometimes. I also take meds too, don't know if you are, it took some time to figure out what meds to stop and figure out what dosages I needed to take if I was staying on that med.

I'd still mark down the gasp ones if you do have them. The more he knows about how it's working the better he can set it to help.

As far as your memory goes I can't give you any advice on that. My memory has been horrible since I've had epilepsy. I don't think the VNS had effect on that.

 

[arnie]

Yeah, I don't really think my memory will get better overall, but if I stop having those subclinical seizures it will probably make it easier to form new memories. I think. I'm on lamictal still and probably will be for the foreseeable future, though I hope to reduce the dosage. I don't know what I will end up with for the settings on the VNS. Interval, duration, pulse width, power level and whatnot. From what I've read it's hard for them to really know what's going to work best. Like you were saying, there's some experimentation involved.
I have decided not to clear my throat when that tingle comes, because it goes away when the pulse stops. It's still odd when I'm talking and all of a sudden my voice is instantly hoarse. Does the hoarseness get better or even go away? If it doesn't, I guess I can live with it. Catch ya later, alligator!

 

[valeriedl]

Another side effect that I have is burping. These aren't just regular burbs they sound more like lion roars that will last for about 10 seconds, maybe longer. They scare the crap out of people when I have them. They mostly occur after I've ate a large meal but I'll still have them at other times.

I asked the surgeon who put the VNS in about it and he said it was probably due to the VNS and what the settings were. He said if the settings were changed it my stop it. I know mine is set pretty high but it is working pretty good in dealing with the seizures so I really don't want to lower it. I guess everyone will have to deal with these lion burps instead of seizures.

 

[arnie]

So, it's been a week now since my vns was activated. I've had five partials, all of which my wife saw. She said that in two of them I didn't smack my lips (and the lip-smacking happened in pretty much a 100% of my seizures) and the other three were much shorter and less intense than normal. It was also a contrast because in the prior 2 weeks, in addition to about 15 szs, I had 2 very strong and long partials which my wife saw. She said she was afraid that one of those was going to turn into a TC.
As I have said before, I have felt really good this week. One of the surprises is how well I've been sleeping. Twice now I have slept until the alarm went off, and I feel generally better throughout the day. I'm not sure just how to describe that, but it's a good thing. I'm also able to concentrate better when I play the piano, and I find that I have not been bumping into things on my left, or catching my left foot on the stairs, both of which I was doing quite a bit. My take on that is that the vns has already reduced the subclinical seizures that I'm sure I was having a lot of.
I know that much of the literature says that the vns may not take effect for a long while, but I can't imagine that direct electrical stimulation to your brain wouldn't do something right away. Think of electroconvulsive therapy, and of what our seizures do to us! Also, I have read some research papers where they can measure the immediate effects of the vns stimulation by using fMRI scans.
I've also been looking into what the optimal settings are, and it's surprising how much they still don't know about how to tailor the various parameters to individuals. I can't imagine that the standard "cookie cutter" settings would be ideal for everyone any more than the same dosage of medicine would be. Again, I'm looking into what research has been done to find out how to work with my neurologist on all of this.
The last issue is the hoarseness, which hasn't really gone away, nor has the tickle in my throat, but neither of those is terribly intrusive. We'll see what happens with those.
Another thing I have noticed is that the unit itself is really visible under my skin, especially if I stretch. It probably protrudes a good 1/4 or even 3/8 of an inch. The lead is pretty visible too. Unless it all somehow sinks into my chest I can't imagine that it will go away. Oh well. I can live with that.
Well, that's all folks! More updates will be forthcoming. Onward and upward!

 

[kirsten]

Hey, Arnie. Glad to hear it's going so well. If you want to keep track of your cognitive improvements, I use Cambridge Brain Science's site, because it covers a good few categories individually and I definitely don't weigh in the same from category to category. You can find it here: http://www.cambridgebrainsciences.com/

 

[Cint]

I've also been looking into what the optimal settings are, and it's surprising how much they still don't know about how to tailor the various parameters to individuals. I can't imagine that the standard "cookie cutter" settings would be ideal for everyone any more than the same dosage of medicine would be. Again, I'm looking into what research has been done to find out how to work with my neurologist on all of this.

I didn't realize there was an optimal setting. It seems to me that it is an individual thing, like meds. Mine is at the highest setting I can go, charging every 3 minutes for 7 seconds.

The last issue is the hoarseness, which hasn't really gone away, nor has the tickle in my throat, but neither of those is terribly intrusive. We'll see what happens with those.
Another thing I have noticed is that the unit itself is really visible under my skin, especially if I stretch. It probably protrudes a good 1/4 or even 3/8 of an inch. The lead is pretty visible too. Unless it all somehow sinks into my chest I can't imagine that it will go away.

The hoarseness will eventually go away, except for when the VNS charges. And so will the tickle in your throat. The pacemaker itself is always going to be visible, but in time, the lead and the scar where they placed the lead will become less noticeable. It all takes time. After all, I had my first one put in back in 1997.

 

[arnie]

Hi Cint. Much of what I have seen says a usual setting is 5 minutes off, 30 seconds on at 1 or 1.25 mA. How do they arrive at different settings, like where yours is (3 min. off, 7 seconds on)? I will be asking my neurologist about this, of course, but I need other input since I don't think he is very experienced with vns patients. He is retiring soon and I am moving to a group of neuros which has a couple of actual epileptologists, so maybe that will help.
With med dosages, of course, we can get blood levels drawn, know within a few weeks or so (maybe) if there are going to be intolerable side-effects, and, except in the case of the newest meds, there are hundreds of thousands of people (millions, even?) who have taken these meds for decades so there is lots of empirical data. vns is relatively new, and from what I have been able to find there are only about 65,000 people who have it. Not a very big pool. In any case, I'm still thinking it's going to be a great treatment for me, but I'm hopeful that I can get the right "dosage" to get the best results.
One other thing: How long did it take before you arrived at the settings you have now? Thanks for the info!

 

[Cint]

Hi Cint.
One other thing: How long did it take before you arrived at the settings you have now? Thanks for the info!

Hey Arnie,

It took the neuro about a year and a half before coming to the setting we are at now. When we kept it at the original setting of charging every 5 minutes, it wasn't doing me any good with seizure control. But first I had to get used to the VNS itself. Initially I had trouble with swallowing and choked a few times. So every time we increased the voltage, we had to be careful. And then, we had to be careful because of the voice change. Sometimes people could not hear me when it was charging. And at times when I am either exercising or biking, I have had asthma-like episodes. My dr. prescribed an inhalant for that. But that all happened within the first year or two. I hope they did give you the little booklet that comes with the VNS from Cyberonics. Some of these are listed in there.

I hope you have success with it like I have.

 

[sunflower]

Alright, Arnie! How wonderful that your concentration is getting better. That's one of my biggest frustrations.
I wanted to ask you guys if any of you have been through an epilepsy monitoring unit. Obviously, it's been a long time if you have since you all have so many stories to tell. But I'm checking into one in Phoenix one week from today and I was wondering if anyone has any advice or things they'd like to share.

 

[arnie]

Hi Sunflower, thanks for the good wishes! I have never been to a monitoring unit, but I'm sure many of the people here probably have. In order for you to get more answers, though, I would suggest that you start a thread yourself with something in the title about epilepsy monitoring unit. That would attract the people who have interest in and experience with that more than this thread does. Also, you can use that thread to report on what goes on in the unit. Good luck with it there!

 

[sunflower]

That's a great idea. Thanks!

 

[arnie]

I've had memory issues for years, as have most of us here. I have had problems remembering peoples names and recognizing their faces, and a hard time keeping track of the characters in TV shows and in following the plot twists, knowing who had done what. A part of that is face-blindness, (prosopagnosia) which I believe I have, and the other I attributed to my epilepsy. During just the past few days, however, I find that I can keep track of the plots of shows much better. My wife and I just finished watching an episode of a BBC show called New Tricks, and I was actually following the convoluted plot and remembering the names of the various people better than my wife was. I can't believe it! I was explaining the show to her for the first time ever! I truly think that it's thanks to the vns, even though I know I've just barely started and it's only at the initial dose. Very cool stuff!

 

[kirsten]

Wow, Arnie. That's awesome. I somehow don't think that facial recognition and memory improvements could be psychogenic--It's not exactly something you can gain through suggestion. I'm with you that it's the VNS.

 

[Nakamova]

Arnie, it's so great to hear that the VNS is helping in such noticeable ways. Woohoo!

 

[arnie]

So here's the latest: I saw my neurologist today and he ramped up the settings. Actually, the Hz (30) and pulse width (I thought it had been 300, but he said it had been 500) both stayed the same. He increased the current to 0.5 mA. I could tell the difference right away when the vns cycled on. I had to cough right away and the left side of my throat, partway up to my ear, hurt for about 10 seconds. I had some hoarseness, as well, but not as bad as when he activated it the first time 2 weeks ago. For a couple of hours there was some real discomfort and that urge to cough when it kicked on, but it's better now. I don't need to cough but there is still an ache. It's a little different than it had been, in that I can feel a small tickle starting, and then about 2 or 3 seconds later the ear and throat pain hit. Before I just felt a little sort of jolt right when it started and then the sensation went away.
As for how I had been feeling (a lot better) he said that the electricity can cause some immediate chemical changes with adrenaline and endorphins, and probably modulate some of the subclinical seizures, but that there are actual physiological changes that only occur with the passage of time, which is why they talk about having to wait a year or more to really see how it's working. Unfortunately I had a couple of simple partials over the weekend which kinda knocked the stuffing out of me a little, but I guess that's how epilepsy is, isn't it? We never know quite what's around the next corner, but it will always be E in some form or other. In any case, I'm still feeling good about this and that it was the right thing to have done.
Anyhow, that's all the news that's fit to print. Time to go make some pasta!

PS: I also found out that it's an old wives tale that you should put vitamin E oil on scars. It doesn't help them heal and for most people causes contact dermatitis. Live and learn!

 

[kirsten]

there are actual physiological changes that only occur with the passage of time, which is why they talk about having to wait a year or more to really see how it's working.

PS: I also found out that it's an old wives tale that you should put vitamin E oil on scars. It doesn't help them heal and for most people causes contact dermatitis. Live and learn!

That's as close to miraculous as medicine gets, hug? Actual physiological changes. Wow.

I had surgery on my wrist decades ago and the orthopedic surgeon was a perfectionist about scars. The incision is about two inches but it's barely visible at all (thankfully, because it would look like a suicide scar if it was.) I wish I remembered how he managed to achieve that.

 

[arnie]

And another update, but not such great news. On the 3rd I got the current ramped up, and except for some throat stuff it seemed OKish. (the full post is just above Kirsten's). Anyhow, on Tuesday night, the second day of the new settings, my wife said I was "snoring" off and on. We talked about it some yesterday and I asked her if it was at regular intervals, to see if it was coinciding with the "on" cycle of my vns. Last night, apparently, it was a lot worse and she timed it: five minute intervals. She also filmed it on her cell phone and it sounds pretty awful. Not so much like a snore, but more like I'm dying! I slept through it, but she had to go sleep in another room. So, I called my doc this morning and I'm going to go in shortly and have the frequency and pulse width adjusted down. Probably leave the current the same. I will also make sure he activates the magnet function so I can shut it off if need be.
There's the news. Just more evidence that epilepsy is such a barrel of laughs, and how little we know about the treatments available for it.
Well, onward and upward! Out into the 11 degree weather! At least it's sunny. . .