my vns experience

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ROFL.. NM :D

Sounds like everything went fairly well today then, other than the pain intensity at 1.0. Down the arm, OUCH... :'( I was surprised given your settings and reported results so far, although not as surprised as you I am sure. I feel your pain though, know you aren't alone! Glad your doc was willing to dial it back a bit! It is great to hear that the initial discomfort of the higher settings is starting to ease!

I too am very interested in the long term psychological impact of the implant, should be interesting. The short term has been good though!

I don't have a name suggestion for you. However you could always build up a convincing "alien abduction" story for overly nosey strangers, LOL. :D
 
Things are going fine. I still have some soreness when it cycles on, but I find that I really don't notice it all the time. I've been talking a bit more than normal and I get a little out of breath when I talk, but nothing really bothersome. I keep the magnet with me all the time (strapped around my ankle. If people saw it they might think I was being electronically monitored for something !) and if I have even the beginning of a seizurey feeling or a memory flashback I will give myself an extra jolt. It's been ten days since my last seizure, which is a pretty good run. I will have to see how things shape up over the next few months, though, to know if I'm truly having fewer seizures overall or if I've just had a calm period.

Cheers!
 
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I am happy to hear that the new settings are working well for you! Ten days since your last seizure is great and I truly hope this continues!

btw, just to update you on our settings and discomfort/pain conversation, I did talknwith my doc on this. He is holding off a bit on adjusting those parameters. However, he did change the off time from 5 minutes to 3. It would seem on it's face like the change would make things worse, however it have actually gotten better!
 
Howdy, all! Here's a copy of a post I put in a separate thread, (vns magnet info) but I'll put it here, too, just for posterity or something:

For those not familiar with the magnet, it's a magnet (obviously!) that we keep with us to trigger our vns unit if we feel a seizure coming on. The magnet is pretty darn big (about 6 cm x 3.5 cm x 1 cm) and you have to wear it around your wrist or ankle or clipped to your belt. It looks kind of like those electronic monitoring bracelets that they put on criminals. You also have to be careful not to get it close to your credit cards or computer stuff, and probably your ipod, I would imagine, because it might play havoc with those things. It's just huge and clunky, frankly. Anyhow, I got to thinking that there should be no reason why a smaller magnet wouldn't work just as well, so I got a little one (1 x 1 x 1/2 cm) and glued it to the back of a pendant I wear under my shirt much of the time anyway. It's completely unnoticeable, and it triggers the vns just fine. Just to make sure I wasn't missing something that would screw up the generator, I called the Cyberonics therapeutic consultant and asked him if there was a problem with that. He said that as long as it triggers the generator when I swipe it, and that it doesn't somehow trigger it by itself there is no problem. Pretty cool, huh? Also, because it's a much less powerful magnet, I don't have to worry about it erasing credit cards and such. Perhaps I should design jewelry with an unobtrusive built-in magnet. Maybe some of the rest of you will want to try something like that if you don't like the ginormous Cyberonics magnet.
 
Well, time for an update, with some not-so-good news, too. :( As I said on the 19th I had been 10 days with no seizures. I know the vns isn't supposed to work that fast or to take your seizures away altogether, but 10 seizure-free days was good. Anyhow, I made it til the 21st, when I had a smallish complex, then one on the 22nd, two on the 24th, two on the 25th and two so far today. What makes me sadder than having the seizures is the fact that a couple of days ago I stopped feeling so good. I have had a lot more energy since I got this activated, have felt clearer, had a big reduction in those unwanted memory flashbacks, and had stopped bumping into things on my left side. In the past three or four days, though, as well as the seizures, I have felt really tired, needed to try to nap during the day, have had a few flashbacks, and, this morning, started to bump into things on my left side again and have my left leg sort of buckle a few times, like it was doing before I got the vns activated. That's not so fun! I've been using the magnet more, too, when I feel that something might be coming on. I guess there is no way to tell if I have stopped a seizure, since I don't have definite auras. Oh well. I'm still feeling pretty optimistic about this. I'm hopeful that this is just a little setback or a stage in the restructuring of my brain's electrical patterns or something. Also, I'm still only at .75, and it supposedly isn't even therapeutic until, what, 1.5 or 1.75? Shoot, I'm having a seizure right now! I swiped the magnet but it doesn't stop the seizure. Yuck. Now I'm really tired and feel drained. I know that many of you can relate. I've actually felt kind of post-ictal for a couple of days now.
Well, life goes on! I'll update y'all again, and hopefully with better news! I see the doc again on the 3rd to have the current increased.
Now maybe I will go eat a square of one of those big chocolate bars to regain strength. Doesn't that sound like a great plan?
Onward!
 
Sorry to hear Arnie. Stay optimistic and strong! It will take some time. Enjoy the good days and roll with the bad ones like usual and keep the hope going for fewer and fewer bad days!
 
arnie said:
Well, time for an update, with some not-so-good news, too. :( As I said on the 19th I had been 10 days with no seizures. I know the vns isn't supposed to work that fast or to take your seizures away altogether, but 10 seizure-free days was good. Anyhow, I made it til the 21st, when I had a smallish complex, then one on the 22nd, two on the 24th, two on the 25th and two so far today. What makes me sadder than having the seizures is the fact that a couple of days ago I stopped feeling so good. I have had a lot more energy since I got this activated, have felt clearer, had a big reduction in those unwanted memory flashbacks, and had stopped bumping into things on my left side. In the past three or four days, though, as well as the seizures, I have felt really tired, needed to try to nap during the day, have had a few flashbacks, and, this morning, started to bump into things on my left side again and have my left leg sort of buckle a few times, like it was doing before I got the vns activated. That's not so fun! I've been using the magnet more, too, when I feel that something might be coming on. I guess there is no way to tell if I have stopped a seizure, since I don't have definite auras. Oh well. I'm still feeling pretty optimistic about this. I'm hopeful that this is just a little setback or a stage in the restructuring of my brain's electrical patterns or something. Also, I'm still only at .75, and it supposedly isn't even therapeutic until, what, 1.5 or 1.75? Shoot, I'm having a seizure right now! I swiped the magnet but it doesn't stop the seizure. Yuck. Now I'm really tired and feel drained. I know that many of you can relate. I've actually felt kind of post-ictal for a couple of days now.
Well, life goes on! I'll update y'all again, and hopefully with better news! I see the doc again on the 3rd to have the current increased.
Now maybe I will go eat a square of one of those big chocolate bars to regain strength. Doesn't that sound like a great plan?
Onward!
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A good bit of this still went on when I got my first VNS. I don't remember how many days in a row I went seizure free. I just know that it did take over a year, don't remember exactly how long, to figure out what meds and settings that I needed to be on.

I'm always tired when I have a seizure, before and after I got my VNS. Depending on how bad the seizure was I'll usually sleep almost the whole next day.

I got my first one 7 years ago and got my second one at the end of last year. A good many times I don't feel the seizure coming on, so I don't know to use the magnet to stop the seizure. If I do feel the seizure coming on and use the magnet it will usually stop it.

I did have a seizure the other day that I must have felt coming on because I was using my magnet, however I did end up going into a complex and blacked out. My husband heard me making noise and saw that I was using my magnet but not replying to any thing he was saying.

Just remember the VNS isn't going to be the miracle cure for epilepsy and since you've gotten one it's going to stop all your seizures. Before I had mine I was having on average 20 a month, all complex partials with a few simple ones thrown in there. Now I'm having around 5 complex a month. I have auras, simple partials, now since I've gotten it so I feel the seizure coming on and I'm usually able to stop it from getting worse. Never really had TCs at all, maybe one a year (even now), so I don't know if the VNS helped out with them at all.
 
One more update: I have had very vivid and often disturbing dreams for most of my life. Since I had the device activated they decreased greatly! Unfortunately, in the last few nights they have started to return. It really does seem like the E is reasserting itself. I will be patient, though, because I am sure with time these things will decrease again. Perhaps the initial shocks to my brain were enough to dampen it down, and now I need more over a longer period to really settle things. Even if I have to keep taking Lamictal I don't care, as long as some of those other things (the memory flashbacks, really small and subclinical seizures, the dreams and at least a big portion of the partials) go away or lessen a lot.

Cheers!
 
Sorry to hear you've hit a rocky patch Arnie. Hopefully it's just a matter of some more fine-tuning.
 
I'm sorry things aren't going so well right at the moment arnie. I'm thinking of you lots and checking your thread. Keep on Keepin on!!! :)
 
arnie said:
It looks kind of like those electronic monitoring bracelets that they put on criminals. You also have to be careful not to get it close to your credit cards or computer stuff, and probably your ipod, I would imagine, because it might play havoc with those things. It's just huge and clunky, frankly
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IMO, the magnet doesn't look like the electronic bracelets that are used by criminals. It isn't HUGE, is small enough to wear on your wrist like a bracelet, maybe a big bracelet.

arnie said:
. Anyhow, I got to thinking that there should be no reason why a smaller magnet wouldn't work just as well, so I got a little one (1 x 1 x 1/2 cm) and glued it to the back of a pendant I wear under my shirt much of the time anyway. It's completely unnoticeable, and it triggers the vns just fine. Just to make sure I wasn't missing something that would screw up the generator, I called the Cyberonics therapeutic consultant and asked him if there was a problem with that. He said that as long as it triggers the generator when I swipe it, and that it doesn't somehow trigger it by itself there is no problem. Pretty cool, huh?
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If you glued the magnet to the back of the pendant, how do you make sure it doesn't set off the VNS when you don't want it to do so? And I don't think I would wear it under my blouse, only to be trying to use it when I feel a seizure coming. What if someone else needs to use the magnet because I'm already in a seizure? How will they know about it if it is on a pendant under my blouse? I like the idea of my magnet where people know where it is and not having to mess with my clothes in order to find it.

I've already had 911 called several times and the paramedics didn't know a damned thing about the VNS. Neither did the ER docs. So I think I would rather keep it visible.
 
valeriedl said:
Just remember the VNS isn't going to be the miracle cure for epilepsy and since you've gotten one it's going to stop all your seizures.
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Don't you mean it's NOT going to stop all his seizures? And don't we all wish there was a miracle for our seizures?!

valeridl said:
Never really had TCs at all, maybe one a year (even now), so I don't know if the VNS helped out with them at all.
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My VNS has stopped my TCs. After I had brain surgery, I was only seizure-free for 14 months. Then they came back as CPs and generalized. Nothing was stopping them. So that is why we went for the VNS. And since I've had the VNS, I don't have any TCs. And not as many CPs as I once did. Maybe 3-4 every 6 months.
 
HI Cint, thanks for your input on the magnet. Since I basically never have tonic clonic seizures I don't have to worry about someone else needing to use the magnet on me. I guess the one that Cyberonics supplies isn't THAT big, but it's too big for me to wear under shirtsleeves comfortable, and since I do lots of mechanic work (on bicycles) It doesn't work for me to have anything very big on my wrists because it catches on things. I don't wear a watch, either, for the same reason. As for the pendant, it hangs down far enough that there is no way it can migrate up to the generator, and since I don't sleep in it it couldn't move when I'm sleeping. I'm alone most of the day so it's easy for me to reach under my shirt and swipe it if I need to. I also made a wrist one that's a lot smaller than the official one and works just fine, and may not even get in the way of working. Partly I do things like that just because I enjoy tinkering with things.

Onward and Backward!
 
arnie said:
I'm alone most of the day so it's easy for me to reach under my shirt and swipe it if I need to. I also made a wrist one that's a lot smaller than the official one and works just fine, and may not even get in the way of working.
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I am alone most of the time, too, so the magnet that is provided by Cyberonics suits me just fine. Plus, keeping the magnet in my pocket is no big deal. I'm able to get it just as quick as if I were wearing it on my wrist or belt.
I have had a few auras in the night when I initially had the VNS. I kept an extra magnet beside my bed and was able to stop the seizure. And I no longer have TC seizures, thankfully.
 
Cint said:
Don't you mean it's NOT going to stop all his seizures? And don't we all wish there was a miracle for our seizures?!
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Yep, thanks that's what I mean. I type really fast and sometimes don't realize what I'm putting in! :lol:
 
Hi Arnie
Thank you so much for posting on my new thread a few days ago. It has been fasinating reading your journey. I didn't realise there were so many things I hadn't seen on the internet regarding the VNS, like the coughing and hoarse voice etc. I am very grateful to have found this community and what I am already learning.
If you or any of the others don't mind I am struggling to understand the difference between all the seizures, I didn't realise there were so many and this has made me wonder what ones I am having.
I am going to see a doc tomorrow for a consultation regarding being haveing a Video EEG done to see if I am viable for surgery or for the VNS and it would be good to know that I am giving him all the correct information. I have never heard of the "GASP".
The tonic Clonic I gather is the Granmal seizure. Then the petimal is what I have, but I think that is quite a broad term. Lasts a few seconds, I have no warning, no aura and I am unaware I have had a seizure untill afterwards when the complete exhaustion sets in and I can't talk properly and the TODD's kicks in on my right leg. (I see you mentioned in your post on the 26th that your left leg buckles - I have that on my right leg, the term that my neurologist gave me for it, is Todd's pararsis). So could you help me out with the differences between in laymans terms:
Gasp, Simple Partial, Complex partial, Sub Clinical, Refractory, Postical. I was amazed to see that that get all of these.
I can't wait to hear what your new neaurologist / epilogists are like.
Thanks so much
Steph
 
Hello! I'm glad you're learning a lot. As you are finding out there is LOT to know about epilepsy, and a lot about it that is still unknown to the medical community. There is a current thread on seizure types that should answer most of your questions about that, and also give you an idea of how different the seizure experience can be for different people having the same type of seizure. There is a wikipedia article which I think does a good job of describing things: http://en.wikipedia.org/wiki/Seizure_types
It does say (or at least implies) that after a complex partial seizure there is no memory of the event. Some people may remember all of it and be aware of it as it happens, and others may not. In my case I am able to function quite well during my complex partials, I'm aware I'm having one, but the "alteration of consciousness" for me is that I am unaware that I smack my lips during the seizure. The "gasp" thing that I refer to my own term for a very brief (maybe 2 seconds) episode where I have an odd feeling flash through me body accompanied by the sensation that I need to take a quick gasp of air. It's pretty strange, and not too pleasant. Subclinical seizures are very small disturbances that can only be measured by eeg electrodes planted at the point where the seizure is happening. Presumably we are not aware of them when they happen, but I have talked with my neurologist about them and he says that for a number of reasons he thinks I have quite a few of them (anywhere from 10 to 30 or 40, maybe more, per day). The terms grand mal and petit mal have been "officially" replaced by tonic-clonic and partial, although people still use the old terms as well. Refractory seizures are seizures that can't be adequately controlled. I have refractory partial seizures and am hoping that my vns will help that. Postictal is the period after a seizure when we are feeling the aftereffects. It can vary greatly in intensity and duration, naturally, because it has to do with epilepsy where nothing is cut and dried!

Onward and upward!
 
Oh my goodness, thank you so much for putting this down in such simple terms (Blond! what can I say) i understand the gasp, i have it often, had quite a few this morning and then had (per my new lingo), a partail seizure about 2 hours ago and am still in the postical period. Will definatley use correct words for my appointment tomorrow. I just need to write this down as I am sure when I come right in a few hours I won't quite remember. :)
Thanks so much.
 
Arnie, a question: if your seizures are especially responsive to medication, are you more likely to have success with vns?
 
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