my vns experience

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I'm still really optimistic that this is going to work, and so far it seems clear that the vns side-effects can be controlled and modulated much more easily and quickly than side-effects from meds. Now that my magnet is turned on I'm going to keep it with me and see what happens if I can use it really quickly when I feel a seizure coming on. Mine hit pretty fast and don't last too long, but I'll give it a go.
Minestrone sounds good. I haven't had it for a long time. Now we have to find someone to bring a dessert. Any offers? Q? I'll bet you have some sort of specialty.

I decided to add a signature to my posts. Let's see if it works.
 
german chocolate cake is always my fave. found out years ago it wasn't actually made in germany but whateva, it's divine!!!
;) i have lots of specialties arn but not in the dessert category.

btw, your signature looks AWESOME. fitting in every respect, nice job!
 
German chocolate would be fine if not for the coconut in the frosting. I'm NOT a coconut fan. Maybe we'll have to make do with another of your specialties. (I had,of course, thought about the double-entendre involved in the "specialty" remark but I was not going to be so gauche as to pursue it. Since YOU did, though, all right! :) )
I'm glad you like the signature. I really think that has to go on a t-shirt. I'm gonna make it happen!
 
zazzle.com or cafepress.com (i of course use the .ca versions ;)) have the best i've seen, there are pages and pages. you pick a style, size, colour of text etc. prob around 30 bucks but worth it!!!

so, specialties ey :ponder: 'double entendre' that was hilarious!!
we'll leave this a clean thread (omg how many times can we get on nak re: ever getting her orgy going?!), so let me offer some yummmmy brownies with red wine? delish!!
 
Brownies and red wine! Perfect!! It would go with the minestrone, too! I'll check out the t-shirt sites. There are also some local companies that will do that. I'll have to check on prices.
 
Just a quick word of praise for my neurologist. On Monday he increased the vns settings and it was kind of uncomfortable at first. He called the following day to ask if it had gotten better, which I appreciated. I called yesterday to see if I could get it reset because of the bad night I had had, and he stayed in the office during his lunch hour to see me, which was great. Finally, this afternoon he called to see if changing the settings had helped, which it had! I don't think it's every doc who would do that, and I think it's pretty thoughtful that he did.
Cheers to him!
 
wow :clap: that's great, not a ton like that out there. nice to hear arn!
 
Great Doc!!! Be thankful you have him. They are hard to come by. :)
 
Yeah, that's great that your neuro is there for you. I hope you don't need him in the future, but it's nice to know he'll make the time to check on you if the VNS needs more tweaking.
 
It is nice to have a good doc, but I think I mentioned that he is retiring in March and will be transferring his patients to a neuro group. One of the people in that group is an epileptologist with more vns experience than my current doc, and instead of waiting another month or six weeks I have decided it would be best for me to transfer soonest so my new neuro can get an idea of how I'm responding to vns. I'm going to have my records transferred today and make an appt. with her ASAP. I have also been in contact with one of the nurse managers from Cyberonics (the company that makes the vns unit) to get more info, just because I like to know as much as I can about what's going on inside of me. She called a rep who works in the area and he will be out on Thursday to talk to me and give me more info and literature on the device. I asked the nurse manager why she thought that neither of my neuros had ever even mentioned vns to me, when I am, in theory anyway, an ideal candidate for it. She said that part of the reason is that it's relatively new (approved in 1997) but also because Cyberonics, being a single company, can't compete with the numerous pharmaceutical reps who so frequently visit the docs and push their products. It's well known how much money is earned and spent by "Big Pharma", and having worked in the health care field for many years I know how the drug reps work and how much time and money they spend courting the docs. I'm not trying to make this into a conspiracy theory, it's just a fact of life that good marketing sells products, regardless of whatever benefits and/or adverse effects are associated with those products. Cigarette and fast food advertising comes to mind. (And bottled water. Convincing people to pay for something that they can get essentially for free right in their own homes! How's THAT for good marketing?)
Finally, I guess the epilepsy population is either too small, or the drugs aren't profitable enough, (or both) to warrant TV spots, since as far as I know there are no ads for AEDs.
As for my vns, I'm still feeling OK, but also still having some seizures. The last couple I have had in the presence of my wife, though, have been unobtrusive enough that she hasn't noticed.
I'll let you know how the meeting with the Cyberonics rep goes.
Now it's time to take the dog for a walk in the wet, slushy snow.
 
Hi Arnie!

I have a couple of questions for you!

Do you use the magnet a few times after the VNS output is adjusted up so that you know what to expect if and when you may need to use it? (It is something I do and recommend. I hate surprises like that! [I have quite a bit of pain around half the time, especially with magnet use])

Have you had your wife use the magnet to trigger the VNS? I understand, from your first entry, how she feels about the topic of Epilepsy and she is probably even more afraid of hurting you in any fashion. My wife is much the same way, especially considering the pain I am dealing with currently. If you haven't done so already, I do recommend that you have her do a few activations if you can get her to do so, so that she gets somewhat comfortable doing it. She is your backup if you can't do it yourself and you don't want her to be too squeamish! Plus, it adds some comfort for you too! I did this with my wife. I hated being insistent about it, seeing that she was really worried about hurting me and all. However, she did understand the need and did it! Now we are both comfortable in that she knows where the VNS is at, even through a heavy winter coat, and how to activate it without being too hesitant nor squeamish!

p.s. thank you for sharing the changes to frequency and pulse width settings of your VNS, both here and in my introductory thread! Those numbers will be very helpful!
 
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Good thoughts about getting my wife to try the magnet a few times. I will probably have her do that, but since I pretty much only have partial seizures I don't really anticipate needing someone to magnet me, but it still would be good for her to know how. Might give her some peace of mind knowing she could do something if I do at some point have a tonic-clonic. As for the magnet setting, at this point it's the same as my normal setting so it feels the same. Are you going to talk with your doc about changing the pulse width and frequency to see if your pain goes away? It really doesn't seem like you should have to be putting up with a painful jolt 250-plus times per day! Keep me posted, let me know if you have other questions, and I will update this thread again after I see my neuro on the 17th to get the current increased to .75.

Cheers!
 
It probably took at least a year to figure out what settings and meds to be on. Even after that my neuro had to change things every so often, mostly only for changing the settings of the VNS. I got my first VNS in 2007 and I've been on the same meds and settings for at least the last 5 years (probably longer).

After I would have any settings changed my neuro would have me sit in the waiting room for about 15 minutes. Then I would go back in and he would check to make sure every thing was working at how it is set. He checks the settings at every visit now, even without changes to it, to make sure it is still working at what he has the settings at. After this he has me use the magnet on myself. Yes it does hurt to use it when your not having a seizure. I'll start coughing and sometimes even tears will come to my eyes.

If my husband thinks I'm having a seizure, he tells me to use my magnet, even if I'm completely aware of everything that's going on and I don't feel like I'm having one. Sometimes I'll start coughing, because I'm not having the seizure or sometimes I won't cough because I was starting to have a seizure and we stopped it. If your wife knows what you look like before having a seizure, I'm sure everyone is different about that, then she can tell you to use it.

There are times that I go into the seizure, not knowing it's coming on, and blank out during them so I can't use the magnet on myself. My husband uses it on me until I'll start to cough then he knows I'm coming out of the seizure. My neuro told me not to rub the magnet on the whole time during the seizure, just to swipe it across the implant every so often. Constant rubbing is just turning on and off again quickly and that isn't how it is to be used. My husband will swipe it on me about every 30 seconds until I start coughing.

We asked for another set of magnets, which were free, so my husband has one that he keeps on him at all times when we go out. We keep one on the fridge at home too.

If I do feel like I'm going to have a seizure I'll use the magnet on myself. I know if I didn't cough then the seizure was coming on and I stopped it in time. This took me awhile to realize what it felt like when a seizure was starting but now that I do, unless the seizure comes on very quick, I know to use it.

Hope things go good after seeing the neuro.
 
I do plan on talking with my doc about the settings Arnie. I am not sure how the adjustment is going to go from here though, I will have to see. The pain isn't every cycle, only about half, and the severity varies greatly. Some days it's a little more and some less too. Much like the last 2 adjustments, the pain has been dropping off gradually over the last week leading up to the next adjustment (in a few days). Seems to be a combination of physical and brain/nerve adjustment to the current.

Want to add for others here: I am at .75ma for 30sec every 5min, magnet mode is 1.0ma for 60sec. 30Hz freq, 500ms pulse width. (history of tle sps, no GM/T-C nor PM)
 
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My neurologist is a really nice guy, but I've had the hunch all along that he really doesn't have that much experience with vns. (One, because he never mentioned it to me as a possible treatment option, and two, because I was the one who suggested he adjust the pulse width and frequency settings when I was having discomfort). With that in mind, I called a nurse case manager from Cyberonics (the company that makes the vns) to ask some questions and see if she could send me more updated information than what I've been able to find on the internet. She was very nice, and in addition to answering my questions, she offered to me in touch with one of their therapeutic consultants who lives about 25 minutes away from me. He came out to my house on Thursday and stayed for about an hour, talking to me and my wife, giving us lots of information and answering a bunch of questions. He definitely knows a lot about vns, works closely with many of the docs and surgeons in Washington, Idaho, Montana and Oregon, is involved with the Epilepsy Foundation, and is starting an educational and support group in the area. He also has the next generation of programming tablets, which is the size of an ipad rather than a Blackberry, (which is what the current model is like.) He is about 6 foot 7 and has huge hands, so he likes the larger interface. He used it and the wand to check my settings and show my wife how it works. Just from talking to him it is clear that he knows more about it than my doc does. Not surprising, I guess, since that's what he does for a living. I mentioned that I will be switching to a new doctor who is an epileptologist and has lots of experience with vns. Hopefully I can get an appointment with her in the next couple of weeks. Just as a matter of interest, he said that the youngest person to have a vns is 2 1/2 months old and the oldest is 92. He said that it's especially good to get really young children on vns if they are having refractory seizures because the side-effects of AEDs (not to mention tons of seizures) on developing brains can be extremely harmful, cause permanent brain damage and prevent proper brain development. I think we all know first hand how harsh the AEDs can be.
Anyway, that's the news from here. When I go in tomorrow to get the settings adjusted upward I'm going to have to tell him to set the magnet mode one setting higher than the normal cycling mode, since he did not do that last time and there is probably no reason why he shouldn't have.
Cheers to you all and have a great rest-of-your-weekend!
 
I do hope that your new Neurologist/Epileptologist is nice as well! I agree that you are making the right decision in getting switched over early. Makes it much easier for your new doctor to contact your old doctor should they have questions after the initial visit! I had been aware of the VNS for many years prior to my neurologist bringing it up asking me If I was interested in considering it. I was actually quite excited by the whole prospect, yet had to temper it a bit until my wife could learn more and until I could get updated information. The biggest hurdle for me on the decision was the relative permanacy of the implantation (the generator can be removed but the leads usually won't be even though I have found in my research that they can be). It is a huge decision. Granted, it is not a huge as having a part of one's brain removed, yet it is still a huge one. Anyway, here we all are today (those of us with a VNS, or have had their generator removed/turned off). My neurologist has many patients with a VNS, so it seems he knows something about whats going in with them. He does have a lot of patients with epilepsy, of course, and I get the impression that is becoming an area of intense interest for him. Time will tell.

I hope your appointment goes well today. Mine is tomorrow.

btw, brownies sound yummie!

A tip on seat belts and VNS: I use a Seatbelt Pad made by Bell to pad the seatbelt when I have to sit on the drivers side of a vehicle. Provides both more comfort and some safety margin incase of an accident (the padding would help protect the generator to an extent). Might want to consider picking one up if the belt is bothersome or you just want something between the belt and your generator that will mostly stay put. Autoparts stores sell them and they are not too expensive.
 
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Thanks for the seat belt suggestion. Fortunately the belt in my truck hits below the generator, but not by a lot. I may look into getting something to keep it a little farther away.

The appointment went well today. He set the current to .75 for 30 seconds, and the magnet to 1.0 and 60 seconds. The .75 was a little painful, but not too bad. When I swiped the magnet to see what the 1.0 was like, Holy Cow!, it hurt a lot! Way more than when the frequency and pulse width were higher. I asked him to leave both the settings at .75 so I could get used to that strength for a while. The pain from that 1.0 went clear down my arm and up to the top of my head almost. NOT fun! Anyhow, that was about 7 hours ago and already the pain has moved down to the level of discomfort, so in a few days it will probably be mostly gone, too. I'm not having much problem at all with hoarseness.

One other thing related to what Say said in the above post: Somehow, the relative permanency of getting a VNS implanted wasn't really something that I took much into account. I think that was overshadowed by the realization of the possibly permanent and certainly worsening effects my seizures and meds were having on me. Also, even though it's only been 5 1/2 weeks since I had this put in, it seems like it's been there a lot longer. Kind of feels like a part of me already, and not at all like something foreign in my body. It might be interesting to see what research has been done on the psychological impact of implants, of whatever nature.

Cheers, all!
 
Kind of feels like a part of me already, and not at all like something foreign in my body. It might be interesting to see what research has been done on the psychological impact of implants, of whatever nature.
Click to expand...
Have you given your implant a name yet? :)
 
Kind of feels like a part of me already, and not at all like something foreign in my body. It might be interesting to see what research has been done on the psychological impact of implants, of whatever nature.
Click to expand...
Have you given your implant a name yet? :)
 
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