my vns experience

[arnie]

Arnie, a question: if your seizures are especially responsive to medication, are you more likely to have success with vns?

I'm not sure if there is a good answer to that. People who have good response to medication may not ever try vns, or even be a candidate for it, at least as far as insurance companies are concerned. I'm sure there are differences among insurance carriers and different countries, but it is not usually tried (or approved by insurance companies) until a person has "failed" at a certain number of meds. I believe 5 meds and continuing refractory epilepsy is a common threshold. Vns pretty much falls into the category of "last ditch efforts", so the people who have it are already pretty poorly controlled.

 

[kirsten]

You forget those of us who've failed at meds because of allergies and life threatening responses. That would be me. I respond really well to anticonvulsants as far as tonic clonic seizures go but my medical aid has already been convinced that I qualify for alternatives because I've tried every anticonvulsant possible. They've assured me that when I upgrade, I will get coverage for VNS. So I'm in my first week on Neurontin with a very low dosage of epilim, and that won't control the tonic clonics because Neurontin only works for other seizure types. It'd be a shame if there aren't any studies for patients like myself but there's a chance there might be because some people develop a broad intolerance for all anticonvulsants. I don't remember what that's called.

 

[arnie]

Actually, "failure" includes everything from lack of seizure control to intolerable side-effects, allergies, whatever. I've been on 5 meds. 3 of which controlled my tonic-clonics but not the partials, and two of which I felt so crappy on after only a week or so I didn't even take them long enough to see if they worked on my seizures. They were, nonetheless, considered failures. I was thinking I would just have to live with the partials, but then the long-term med effects started kicking so I decided to try the vns. Sounds like you would be a good vns candidate from the "failed med" standpoint. Keep us posted!

 

[kirsten]

I am hoping that being responsive to meds will make me responsive to VNS. I'll do some research when I have some energy and let you know. Do you happen to know whether people with a definite seizure focus do well on VNS? I guess that my neuro is doing VNS before lobectomy means he thinks I would be a good candidate for VNS? Anyway, I still have ten months to go and counting!

 

[Cint]

Actually, "failure" includes everything from lack of seizure control to intolerable side-effects, allergies, whatever. I've been on 5 meds. 3 of which controlled my tonic-clonics but not the partials,

It can also include failed brain surgery. I had tried 8 more meds AFTER a left temporal lobectomy, to no avail. After my brain surgery, the seizures went from CPs to CPs + TCs. So I had the VNS and it has stopped the TC seizures and decreased the CPs.

if your seizures are especially responsive to medication, are you more likely to have success with vns?

If a person's seizures are responsive to medication, why would they want to mess with the VNS in the first place? onder: I would have been more than pleased if my seizures were responsive to medication.

 

[kirsten]

If a person's seizures are responsive to medication, why would they want to mess with the VNS in the first place? onder: I would have been more than pleased if my seizures were responsive to medication.

I guess you missed my preceding post. I have had Stephen Johnsons reaction to a whole group of AEDs and severe hyponatremia and encephalopathy with another group, so basically, AEDs that can control my tonic clonics really well will also kill me.

 

[Cint]

I guess you missed my preceding post. I have had Stephen Johnsons reaction to a whole group of AEDs and severe hyponatremia and encephalopathy with another group, so basically, AEDs that can control my tonic clonics really well will also kill me.

Oh...... sorry. I didn't realize you did have Stephen Johnson's reaction to some AEDs. That is a conundrum in itself. These AEDs can also be harmful to some.

 

[kirsten]

Ya, it sucks--so close yet so far. As you say, "The golden rule is that there are no golden rules."

 

[valeriedl]

I was a candidate for a VNS for two reasons. I was unable to have surgery. I had also tried so many different meds but none really seemed to do anything to help with my seizures. After I got the VNS I'm having less seizures and they aren't as bad, I'm still taking meds however too.

As far as being on meds working good for you I'm not sure if you'd be a candidate for a VNS or not? By getting the VNS doesn't mean it's going to 'cure' your epilepsy. There are people who have responded well to it and others who have not.

It's something worth asking your dr about though and get his opinion.

 

[arnie]

So today I had my 4th visit to my neuro for another adjustment. A couple of the issues I asked him about were the shortness of breath I've had during the "on" time, and the horrible moaning noise I've been making when I'm asleep every time the vns is on. (I don't know that's happening, but my wife sure does! She recorded it once on her phone and it's a horrible sound.)
Anyhow, the doc reduced the pulse width to 130, which immediatly took away the shortness of breath, and will presumably help the night stuff, too. He increased the current to 1.0, and there was no increased discomfort, which is good, especially since when he set it to 1.0 two weeks ago it hurt like a $%#@! There was also no shortness of breath, and my hoarseness is not too noticeable. It all seems pretty good. Now if I only have a consistent decrease in seizures, but I always remind myself that that could take a while.
Finally, since the device was activated on January 20 I have had a total of 76 hours of "on" time. Those 30-second-every-five-minutes shots really add up when it's happening 24/7. I also have swiped the magnet a total of 272 times, which seems like way more than I would have thought, but, in addition to the times I've used it because I felt like I might have a seizure, that includes the times I've swiped it during the office visits and the times I was swiping it to test out my new magnets. He said that is not really an out-of-line number, but I think it will decrease as I get more used to it and I get the adjustments finalized. I will see this neurologist one more time, on the 24th, and then he will be retiring. I have an appt with my new neuro on April 8.
Overall the vns still gets a thumbs-up from me. My wife also feels good about it and thinks it's made some differences in my seizures.

Onward and upward!

 

[SayThatAgain?]

I know that pain and I feel for ya, it sucks. I hope thus reduction in pulse width does the trick! For me, reducing off time from 5 to 3 minutes helped a lot. I do wonder if reducing your on and off times would help with your breathing at night. Might be something to ask at your next appointment or with your new Neuro.

 

[arnie]

Reducing the pulse width has already seemed to help. Why do you suppose reducing the off time helps? Did you reduce the on time as well? I've heard that some people do better with faster cycling. How long is yours on for?

 

[SayThatAgain?]

I am going to answer your last two questions first. On time wasn't reduced and is still at 30 seconds (off for 3 minutes). As for the First question, I have no idea why it worked, I just know it did. Yes, every now and then it is a bit uncomfortable. However, it isn't anything worth messing with the settings over. As we know, everyone is different and responds differently so it is only a suggestion for discussion with your Neuro. I hope the change in pule width does work!

It appears I wasn't clear in what I has said previously. I should have stated it as: "If your breathing issues at night continue despite the change in pulse width, it might be something to ask at your next appointment or with your new neurologist.". Does the "horrible noise" start up immediately or part way through? (I don't like to pry too much) I was just thinking that a change in on and off times, making them shorter, could help in eliminating that noise issue. For example, if they start up 20 seconds through the "On" time, set the "On" time to 20 seconds and adjust the off time down to make up for the reduced on time. However, if if it starts immediately I don't know what to suggest VNS wise. The VNS on it's own (and I truly feel for you and your wife on the breathing and snoring issue) can cause excessive snoring and Sleep Apnea as I understand it (according to my Neuro and what I have researched. He told us so long as breathing doesn't stop nor snoring isn't too much not to worry). I do understand why you are looking for answers and setting that work. That shouldn't be happening at night, it isn't good for you and your wife needs her sleep!

I do know that body weight (I have my own struggle there) can have a huge affect. There are folds of tissue in the throat that will get larger when body weight goes up and are part of what contributes to Sleep Apnea in Overweight and Obese People. I know this about this from personal experience having been at 340lbs just 3 years ago (I now fluctuate between 225-235lbs now!). The tissues don't always return to a normal size as the weight is lost., sometimes it has to be surgically removed.

 

[arnie]

Thanks for the answers, Say! As with everything epilepsy, vns is obviously quite variable from person to person and requires a lot of tweaking. My wife says the "night noise" seems to last about 30 seconds, and is the same length every time, so I would say it corresponds exactly to the on time. Fortunately, sleep apnea is not an issue with me. (knock on wood.) I'm about 175 lbs. at 5 foot 10, so my weight is not a factor in that.
I will probably discuss the settings more when I see my new neurologist. She is an epileptologist and apparently has a lot more experience with vns than my current neurologist does, so presumably she will be better able to work on the fine-tuning. I will keep you posted on how things go with sleeping and moaning over the next few days.

 

[valeriedl]

I went to my neuro yesterday and he increased my VNS to 3.25 because I've been having a lot of seizures over the last few months. I'm not sure how long it's on and off for (you say it in more technical terms arnie) but I know it's very short intervals. Hope you don't get to this point.

I've been feeling ok so far on these settings but it's only been 24 hours. I know the last time he increased it, which was over a year ago, I was having some side effects so he had to reduce it.

 

[arnie]

Wow, Valerie, I can't even imagine 3.25! 1.00 isn't that uncomfortable, but I think 3.25 would kill me. I'm glad that you're not having side effects. I was hoping that changing the pulse width yesterday would get rid of the moaning at night, but my wife said it didn't. I'm still having a ton of bizarro dreams, too, that have returned in the past couple weeks, after I had been rid of them for a while. As I've said, though, I know I'm still in the "getting things adjusted" stage, so I suppose this is all to be expected.


Onward and upward!

 

[Nakamova]

I'm glad that you're making progress Arnie, hope it continues in the right direction. And good luck to valerie, cint and any other VNS users out there. It sounds like the process requires a certain amount of patience and good humor.

 

[valeriedl]

I felt little bit of tingling in my throat for about half and hour then it went away. I'm noticing it every so often now but it doesn't really bother me. That was really the only problems that I've had.

When he increased it before this last time, probably to 3.25, I was having sort of 'hiccup burps' and he reduced, I'm guessing back to 3.00, it because I couldn't stand them. I only did it once now and haven't done it since he increased it back up.

I'm not sure if I do anything at night because my husband and I sleep in separate bedrooms.

I have, for years, had lion roar burps. They sound like a monster yelling. Have you had anything like that? I joke with my dad because for some reason I have a ton of them when I'm with him. I don't know why, it's very odd?

 

[mspang]

I had the VNS implanted back in 2007, but then had it shut off in 2011 as doctor didn't think it was helping at all.

So unfortunately VNS was all for not for me!

 

[arnie]

Well, time for a quick update! I went to my neurologist yesterday for the last time. (He's retiring and on the 8th of April I will see my new one). He stepped the current up to 1.25 mA and there was some increased discomfort when it kicked on, but after a few hours it pretty much quieted down, and this morning it's almost back to what it was before the increase. Interestingly, the hoarseness was no worse, and the shortness of breath I had been having is actually less than it was on the lower setting! It's hard to tell if it's having an effect on my seizures yet. Even though it's not really up to therapeutic levels yet, and it's only been activated for 2 months, I would say that it is. I've only had 13 seizures so far this month, compared to 24 in January and 25 in February. I'll have to wait a while to see, though. My seizures vary in some sort of random cycle, but over the years it has probably averaged out to about 1 per day.
A good sign that the subclincal seizures are being reduced is that my left-sided weakness has improved quite a bit. For the last 6 months or a year I've been increasingly bumping into things on my left side, and I've noticed that when I walk with a hiking stick I've always tended to lean on it more heavily when I have it in my left hand. The bumping into things has decreased a lot, over the past month or so, and over the last couple of weeks, I've seen that I no longer put extra weight on the stick when I walk, so that's a good thing!
Well, that's it for the update. I'd better get going on my list of stuff to do today! It's a pretty long one.

Cheers to y'all!