my vns experience

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oh cool. it sounds like its getting better. Thank you for posting
 
That's great (about the subclinical seizures.) The leaning thing is a seizure thing, isn't it? I kind of have the same thing. When it's very bad, I'll walk but I can't walk straight. Something pushes me to walk diagonally to the left or right. No matter how hard I try, I can't correct. I also often catch myself with my head leaning uncomfortably to one side, sometimes all the way down to my shoulder.
 
So, time again for an update! I saw my new doctor on the 8th. As I mentioned before, she is an epileptologist and not just a neurologist. I will probably start a separate thread on this, but in summary, I will NEVER again see a neurologist for my epilepsy and I would encourage each and every one of you to get yourself under the care of an epileptologist if it is at all possible for you to do it. In the hour-long Dr. visit I had on Monday (my wife was with me) I learned things about E in general, and about my personal situation with epilepsy, that I have not known about for these last 30 years, and I am pretty well-educated on epilepsy. Also, as she was asking what tests had and had not been done, etc., and from her reactions to my answers, it became very clear that I have not been receiving the standard of care or the level of expertise that a person with epilepsy needs. One example: she looked at an MRI that I had gotten last November, and which my old neuro said had some slight abnormalities in certain areas of my brain but was really not too far off of what normal variations might be. She said that from an epilpeptologist's viewpoint it had many glaring abnormalities. She told me a few of the details over the phone after she had reviewed the scan so of course I don't remember them all, but suffice it to say she sees things in a whole different way than a normal neuro does. I like analogies, and I figure it's like the difference between taking your Rolls Royce to an authorized Rolls service center rather than Joe's Backyard Auto Fix-it Center. You get the idea. To paraphrase Hamlet's statement to Ophelia, "get thee to an epileptologist!".
As for the VNS, the main issues I've had in the last few weeks is that the mild discomfort I felt when it went off had migrated from a tickle in the throat to an uncomfortable "coldness", almost a nausea, but only from my throat to my clavicle, if that makes sense. The doc made a few adjustments to the VNS settings and much of that discomfort has passed. One of the changes she made was to change the off time to 3 minutes instead of 5. The on time is still 30 seconds, current she reduced to 1.0 and left it at 1.25 on the magnet. For some reason, my hoarseness got much more noticeable right after those changes, but it has gotten better again over the past couple of days. I told her that I had made some suggestions to my neuro about changing the pulse width and such, and she said that I had almost been acting as my own epileptologist. She clearly was not amused by my former neuro. I think I'm in a place right now where I don't feel that I have to second-guess everything my doctor says, and have confidence that she is really an expert at epilepsy. It's a very comforting feeling. My wife is very happy that I have this new person, and she's REALLY disgusted with my previous two neuros. I don't believe in regret, but I know things would have been different for me and my epilepsy if I would have been seeing an epileptologist for all these years.
Oh yeah, that moaning or groaning noise I was making when I was asleep seems to have gone away, according to my wife. I'm still having seizures (21 in March) but they are not as long in duration and it's still relatively early in the process so I'm feeling OK about that.
Gotta get going. I have lots of bikes to fix and assemble and if I don't do it no one will!

Onward and upward!
 
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To paraphrase Hamlet's statement to Ophelia, "get thee to an epileptologist!".
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:roflmao: :agree:

well put arn! not to say neuros in general are no good for those with e, however (as i learned in 2011), the difference is vast. good to hear, happy for you.
 
I am very happy to hear about your progress and new doc Arnie! I am also very happy to hear that your new VNS settings are working well for you and appear to have alleviated breathing issues at night and reduced seizures, amongst other things! I do recall you and your wife being very concerned about that and rightfully so. Sounds like you are on the right path, stay strong!! (kind of odd how reducing the "off" time cleard up the breathing issues, eh? kind of like that it did for 80% of my pain issues, which are in the neck muscle/tendon). I hope everything continues to go well!
 
Thanks for the nice wishes, saythatagain. Unfortunately, the nighttime breathing issues seem to have returned. I guess I'm not making the groaning noises, but I'm making some sort of sounds that wakes my wife up, and then she pokes me so I will stop. Several times now I have been awake enough to hear the tail end of the sound.
This morning at 0200 she woke me up and I got up and taped the magnet over the implant to shut it off. I think I will do that now the first time I wake up at night. I will sleep better and so will my wife. A few hours without the VNS is probably better than chronic sleep deprivation. I'll be talking to the epileptologist about it when I see her in May. I'll keep y'all updated.
Also, maybe I already knew this and have forgotten, but do you have a vns, saythatagain?

Cheers!
 
I got my first VNS in 2007, second in 2013, and I've never had any problems sleeping. Do you think that you may be talking in your sleep in some way? I do that at times and have woke myself up. Your problem could still be VNS related so it's good that you will be saying something to her about it.
 
Another update and some new discoveries about potential side-effects of vns therapy. First off, to Val, it's definitely vns related because my wife could lie awake and time the intervals between the noises and it was 5 minutes (then 3, when the doc changed the settings). I've been turning it off at night for a week or so now. I need my sleep!

Now, for the new finding: I have noticed that in the past 6 weeks or so my tastes in food have been changing some. For instance, I have felt like eating soup much more than I ever used to, and I have felt less hungry than normal and get full faster, regardless of what I'm eating. I knew that the vagus nerve ennervates many areas of the body, so I decided to see if it had anything to do with appetite. Through the magic of Google I found that there is indeed a correlation between vagus nerve stimulation, amount of calories consumed, and desirability of certain foods. There has been research done both on animals and humans which shows a high correlation there. The interesting thing is that people who are lean or normal weight will tend to eat fewer calories and avoid junk food type stuff, whereas overweight and obese people actually consume more calories. (So having a vns implanted is not a magical way to lose weight!)

My wife says that I have definitely lost weight. According to my scales about 5 or 6 pounds in the past month or so, and my wife says my face looks thinner and my pants are looser. (If you want the numbers, I've gone from about 175 to about 169. I'm 5 feet, 10 inches tall.)

So, there you have it. Has anyone else with a vns noticed any change in their appetite or food preferences, or am I an outlier of some sort?

As for seizures, I had 24 in January, 25 in February, 21 in March, and only 11 so far in April. That's good news, but I've had other months in the past when I have had that few so it's way too soon to see if it's a real reduction or just the normal variations that have always occurred.

I'll be seeing the epileptologist on the 5th of May, so I'll let you know how it goes.

Cheers! Onward!
 
:hi5: for being so involved in everything that takes place and changes from head to toe arn, kudos. as i count everything i do/see/feel i appreciate reading your stuff, it's so smart to keep an eye on yourself so well!
nat.
 
arnie said:
Now, for the new finding: I have noticed that in the past 6 weeks or so my tastes in food have been changing some. For instance, I have felt like eating soup much more than I ever used to, and I have felt less hungry than normal and get full faster, regardless of what I'm eating. I knew that the vagus nerve ennervates many areas of the body, so I decided to see if it had anything to do with appetite. Through the magic of Google I found that there is indeed a correlation between vagus nerve stimulation, amount of calories consumed, and desirability of certain foods.

So, there you have it. Has anyone else with a vns noticed any change in their appetite or food preferences, or am I an outlier of some sort?
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Hey Arnie,

When I had my first VNS back in 1998, I noticed a huge difference in my appetite. I didn't want to eat. But then, I was initially having trouble with swallowing, too, which also comes with the territory of the VNS for some. I basically had to re-learn how to eat, swallowing much slower, cutting fruits and veggies in much smaller pieces. And now I no longer like the taste of beef for some reason. Eating has become such a chore nowadays. Soup is much more my thing now, even in the summer. And usually oatmeal for breakfast.

The only time I had to have my VNS turned off is back in 2004 or 05 for a short time. I had a bad case of bronchitis and couldn't breathe. Thank god it was only for a week.
 
valeriedl said:
I got my first VNS in 2007, second in 2013, and I've never had any problems sleeping. Do you think that you may be talking in your sleep in some way? I do that at times and have woke myself up. Your problem could still be VNS related so it's good that you will be saying something to her about it.
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I've never had a problem with sleeping since I've had my first VNS way back in 1997. However, Insomnia is listed as a Potential Side Effect in the "VNS Physician's Manual"

http://dynamic.cyberonics.com/manuals/index.asp
 
Well, I went to the doc again on the 5th. She set my vns to cycle on for 30 seconds every 3 minutes, and the current is 1.25 normally and 1.5 when I use the magnet. As always, I have to keep reminding myself that change does not happen quickly with this, and that, as the doc put it, I am still on a "wimpy" dose. The 1.25 is bothersome at times, and the 1.5 is close to painful, but with time that will lessen, I'm sure. I remember that the first time it was set to 1.0 it hurt like crazy, and I certainly got used to that.
As for seizures, I'm still having the damn things, of course, but I've told myself to try not to expect anything for 6 more months. I'm using the SeizureTracker to graph things out so I will be able to see any patterns and, hopefully, a significant decrease!
The doctor knew I was kind of discouraged, especially since I had a few stronger seizures a couple of weeks ago, and she suggested that I might want to try Vimpat. I'm definitely not going to do that for two reasons: First, I want to give the vns a chance to work, and if I take a new drug and things improve I won't know just what caused the improvement. Also, I've had really unpleasant side-effects with the last 3 AEDs I've tried, and I'm not in the mood right now to want to risk going through another batch of stupid side-effects, ya know?
A final thing, and probably the most discouraging, is that when I have to vns on a night I make that odd moaning sound when it cycles on, which makes it hard for my wife to sleep, and probably doesn't do my sleep any good, either. I've been turning it off at night some, but I don't really want to keep doing that, either, because I obviously lose some of the therapeutic effect.

Finally, she referred me to a neurological center for a complete neuropsych eval. I'm actually kind of looking forward to that. It will give me an idea of where my strengths and deficits are, (although I, of course have no deficits at all!) and presumably some things to do to help compensate for any deficits they find (which of course they won't!) :)

Well, I've got a dog to walk and lots of work to get done, so I'd best be off. Any words of wisdom or encouragement are appreciated.

Onward and upward!
 
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Well, of course, none of the CWE crowd have any deficits. Even neurological ones.

If you are going to decide not to add the Vimpat, just don't forget to account for kindling. Factor that into your decision as well.

As a sleep-moaner, I can assure you that moaning doesn't always get in the way of sleep. I am the best sleeper in the universe, despite all my chattering away. The only times I don't get a good night's sleep is when it's intentional i.e. when there is some fun that needs having.

Good idea to put a six month date on the expectations. That'd work well for me if I were in your situation.
 
Arnie, Have you done any looking at sleep apnea? I read that that is linked to seizures at night and that sleep apnea can be deadly so it is a great thing to get checked-out. I am trying to do that for myself, but am not wanting to spend the night at the hospital for a study. The sleep issues you talk about sound very much like apnea. Just sayin'
 
Thanks, Kirsten and Janus. Just to address those briefly, I hope the moaning isn't interfering with my rest. It's kind of hard to know, especially since in the past couple of months I have been spending a lot of time and energy on the play, and thinking/pondering a number of other things which could mess with getting good rest. Of course, we always have things like that in our lives, to varying degrees, so it's hard to know just what causes what.
As for the sleep apnea, fortunately it's not that. The docs, both my previous and current one, asked my wife some fairly detailed questions about what she was hearing and it's definitely not sleep apnea, fortunately.
Gotta get to work!

Onward!
 
Hey, congrats on that, no apnea thing. And i thought about stress, in my case, it disrupted my sleep so much just last week and the doc believes that's what caused a spike in seizures lately. btw. i thought you are retired? but you're going to work?
 
I'm far from retired! I quit my job as a social worker about 13 years ago to open a bicycle shop. It's a one-man business, so if there is anything that needs to be done in the shop, I'm the one who does it. In the busy season I work probably 60 hours a week. It gets slow in the winter so I do most of the cooking and shopping and housework then. I also assist my wife (who teaches full time) in her part-time job as a Realtor. All of that tends to keep me pretty busy, but I don't really have any major, unusual stressors in my life. There were a few years in the mid-90s where a bunch of really horrible stuff was happening, and that didn't seem to have any effect on seizure frequency, either. That's one thing that is really frustrating about my epilepsy: pretty much a complete lack of any particular precipitating events or seizure pattern. When I graph it out on SeizureTracker there are just random ups and downs. No rhyme or reason. No method to the madness, so to speak. I think, as my sig says, my brain just has a mind of its own.
 
Wild. I stand corrected Arnie. I am glad to hear that it sounds like you have a great support there.
 
It's so weird that you and your wife can hear your VNS go off. No one has ever heard mine, even me.

Has anyone else said that they've heard theirs? My memory's not so good.

When I get it adjusted I'll be able to feel it go off for a day or so then my body get's used to it and I don't feel it at all.

My parents own their own business too and they say it's the greatest thing in the world. If they need to open late or close early you can do it. And if you need to you can shut down for the whole day. Plus you get to pick your own vacation time! No boss to have to argue with about these things.
 
We can't actually hear it go off, but my wife can hear the noise I make when I breathe start and stop every few minutes, so she knows it's related to that. Mine was adjusted up to 1.25 six days ago, and I can still feel it go off pretty strongly, on my left side, lower throat and jaw, and almost down to my clavicle. When I use the magnet, at 1.50, it's almost painful. I get pretty hoarse when it goes off, too. Other people say they really don't notice, but I can certainly feel it. I'm hopeful that those things will go away eventually. I remain optimistic! :)

As for owning your own business, I really like it, too. The joke about that is that you only have to work half days, and you can choose which 12 hours to work! Seriously, I love having my own business and wouldn't want to work for anyone else ever again!

If anyone else who has a vns would like to chime in with their experiences with the discomfort, hoarseness, etc., and when I can expect it to go away I would appreciate the input. Also, what current is yours set for?

Thanks! Carry on!
 
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