my vns experience

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I guess it's like adjusting the antenna so the picture comes in just right. (For you young folks out there I'm talking about old-timey TVs). Hope the tweaks lead to zero static and a beautiful clear picture Arnie.
 
arnie said:
Well, onward and upward! Out into the 11 degree weather! At least it's sunny. . .
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:roflmao: now now strong man, enjoy it that's nothing! the day here started at -38 and as of 1pm it's -31 ;)

hugs and sorry to hear about the last few days; silver lining is having your wife watch and record it all. and you're always right... onward and upward.

:hugs:
 
Thanks, Nak and Nat! I think my TV antenna has a bent coat hanger and some aluminum foil on it somewhere. Again, that's something that you have to be a certain age to know about.

I guess I won't complain about the temp, Nat. It's probably up to 15 now and sunny and not windy! Practically t-shirt weather!

I just got back from the adjustment, and resetting it to 15 Hz and 250 microseconds pulse width has made it much more comfortable. We'll see how the sleeping goes tonight!

Onward!
 
...and upward!

and hey i'm considerably younger than you and i grew up with foil on our 400-pound tv's antenna, so my guess it's only a wt-?? to those who are in their 20's right now.

"practically t-shirt weather" ?? haha you suck! i've got a long-sleeved shirt on, hoodie overtop, and a down winter jacket. and i'm inside :eek:
 
qt, do you have gloves on too? I use fingerless gloves to keep my hands warm at the keyboard...
 
no, hot coffee in hand tho.
however i'm calling a cab soon to hit a bookstore to buy cards for my e-team. if that cab driver doesn't have the heat cranked he ain't getting no damn tip!!!!!!
 
Arnie I'd be interested to know whether your doctor lets you turn the VNS off all night. Is that even possible? Well, I'd be interested to know whether the VNS's long term effects would allow it to work through an entire eight hours turned off.
 
kirsten said:
Arnie I'd be interested to know whether your doctor lets you turn the VNS off all night. Is that even possible? Well, I'd be interested to know whether the VNS's long term effects would allow it to work through an entire eight hours turned off.
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Well, you can turn it off pretty much whenever you want by holding the magnet over it, but normally you would only do that for a few minutes at a time, like if you were singing or giving a speech or maybe doing exercise. You could tape the magnet over it to leave it off for an extended period, but it is not desirable to do that, because, as you were thinking, the long-term effects would not be as good if it were off for 6 or 7 hours per day. I'm hoping that changing the settings will help me sleep without sounding like I'm about to die!
 
I hope so, too. What's the point of being married if you can't cuddle up at night, after all?
 
Good news! No "sounds of impending death" last night! I hardly notice when the vns cycles on now, and the hoarseness is almost completely gone. Now I suppose it's a waiting game to see what happens with the simple partials. I still think the subclinical ones have lessened, but probably my seizure-free days last week were just a normal part of whatever seizure cycle my brain decided it was going to follow for that period of time. I guess my brain has a mind of its own! (Rim shot!)
(Actually, that would be a great slogan for an epilepsy t-shirt or coffee mug or something. "Epilepsy: when your brain has a mind of its own.")
 
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Actually, that would be a great slogan for an epilepsy t-shirt or coffee mug or something. "Epilepsy: when your brain has a mind of its own."
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I like it! Maybe qtowngirl can design the merch.
Alternate version(?): Epilepsy: When your brain won't mind"
or..."When your brain is waving, it's misbehaving..."
 
awesome guys, would love to!

hugs nak, they're all great but if i had to pick i think arn's 'brain has a mind of its own'... that is so unique. haha most people would be so stumped reading that, yet on the other hand it's so obvious.

:ponder: now i'll have to think of something unique graphic-wise to go with it; if the saying is unique then the pic has to be too. sooooo arn... get your wife to take one of you rubbing your new magnet.... ;)
 
kirsten said:
Arnie I'd be interested to know whether your doctor lets you turn the VNS off all night. Is that even possible? Well, I'd be interested to know whether the VNS's long term effects would allow it to work through an entire eight hours turned off.
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Kirsten,

I also have the VNS and had my first one implanted back in 1997. I've had two replacement battery surgeries. One can turn off the VNS like Arnie said, by holding the magnet up to the VNS for a few minutes. Folks do that for singing and giving speeches, etc. It does take a while to find the correct settings for comfort and to get the seizure control. I now have mine at the highest setting. It won't work if it isn't turned on.

Several years ago I had a bad case of bronchitis and couldn't breath because of the coughing, so my neuro had to turn off the VNS for a few days. Needless to say, when I recovered from the bronchitis and just before we turned the VNS on again, I went into a major TC seizure. My daughter was going to call 911 because she thought I was going status. So I wouldn't turn it off and on like that.

kirsten said:
I hope so, too. What's the point of being married if you can't cuddle up at night, after all?
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What's the point of having the VNS if you want it turned off at night time for cuddling and other activities :noevil:?
 
Cint and Q, you guys have really dirty minds. I love it!! :)

Seriously, Q, you should come up with a design to go with my slogan. I might even talk to a local graphics company and get some t-shirts made up to put in the merchandise section. Wouldn't that be cool? Or bumper stickers or magnets or something. See what you can come up with for a great graphic.

Also Cint, do you have the frequency and pulse width at the highest settings, too? Did you ever have a really sore throat or that scary, death-like groaning at night? I guess I won't have to turn it off at night. I don't like the idea of not having it on. It's really something you get used to and sort of depend on, isn't it? I'm feeling that way already, even after only 3 weeks. I've read that after you have been on it for quite a while you will be more prone to seizures if you stop it. The brain must become somehow dependent on the vns to work right. Fascinating stuff, eh?

Time to go bake delicious whole wheat bread! Who wants to come over with soup? Who'll bring the dessert?

Cheers!
 
arnie said:
Seriously, Q, you should come up with a design to go with my slogan. I might even talk to a local graphics company and get some t-shirts made up to put in the merchandise section.
Cheers!
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I always find slogan tees funnier when they're just text, no graphics.
 
qtown, I have a friend who only ever wears funny tees he made himself and they work so well. I couldn't paste a pic here, so if you'd like to see, I've uploaded it in my profile album (had to chop off his head for privacy) called "weird things I like to photograph." They're seriously simple but everyone reads them and they look classic.
 
arnie said:
Also Cint, do you have the frequency and pulse width at the highest settings, too? Did you ever have a really sore throat or that scary, death-like groaning at night? I guess I won't have to turn it off at night. I don't like the idea of not having it on. It's really something you get used to and sort of depend on, isn't it? I'm feeling that way already, even after only 3 weeks. I've read that after you have been on it for quite a while you will be more prone to seizures if you stop it. The brain must become somehow dependent on the vns to work right. Fascinating stuff, eh?

Time to go bake delicious whole wheat bread! Who wants to come over with soup? Who'll bring the dessert?
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Arnie,
I don't remember the frequency and pulse width right now. Initially, I had a sore throat and difficulty breathing a few times. One time I went into an asthma-like attack, wheezing, couldn't get air into my lungs, and fortunately I had an inhalant around because my son has asthma. But that hasn't happened since back in the 90's. Plus it was one of the older models of the VNS.

The brain is fascinating!

I'll bring some homemade minestrone soup to g with that homemade bread.!
 
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