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  #221  
Old 05-29-2014, 05:45 PM
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Well, I got a call from the epileptologist's office in response to the email I sent this morning. She can fit me in on the 4th of June instead of the 12th, so I won't have to wait as long to see what she can do. I know there is a lot that can be done to tweak the parameters, so I will try to just be patient. I will meditate or something. Ommmmm!

Onward!
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  #222  
Old 05-29-2014, 05:48 PM
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Have they been doing anything with your meds too arnie (I'm guessing you are taking some)? I don't know if that would have any effect on the VNS or not?
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  #223  
Old 05-29-2014, 11:09 PM
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The only change in my meds is that I went from Lamictal 200 mg twice a day to 100 mg four times a day. Same amount, just spread out a little more. She talked about having me start Vimpat, but I think it's crazy to add in a new med while I'm waiting to see what the VNS will do. Changing two variables at once doesn't seem to make good sense.
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  #224  
Old 05-30-2014, 07:21 PM
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I don't know if this has been asked or if you've said this in a post or not but how often and how fast does your neurologist increase the strength of your VNS?

When mine increases the strength he does it by 25 (what ever it's called) at a time. He said it's really not recommended to increase it more than 25 at a time. I was having a lot of seizures once between visits he time he did increase it by 50. It did help with the seizures but I was having problems, I can't remember what they were because this happened a good many years ago but I'm pretty sure some of them were what you are dealing with. He realized it was probably because he increased the strength to far at one time. He lowered the strength down by 25 and the problems stopped. Now if he does increase the strength it's every 3 months at the closest. He always asks me first if I'd want to have the strength because I may be having more seizures. He always tells me first that it would be a good idea or not a good idea (and explains why) to do it, but leaves the final decision up to me.

I know he did a good bit of messing around with my meds when I got it. Increasing some, lowering some, spreading keeping me on a med but spreading it out differently during the day, taking me off of a med, switching a med to another. And I think at first he may have added a med to the current ones I was taking.

The way I looked at was with the VNS it's sort of like someone who comes in to the office on their first visit and the neurologist has to figure out what to do and what meds you should be taking. The amount and type of seizures are probably going to be completely different than what you were having before you got it so he has to start all over again from the very beginning.
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  #225  
Old 05-30-2014, 09:49 PM
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They have been increasing the strength by .25 milliamps every time, but the last time she left it alone and had it go on every 3 minutes instead of every 5. I am at 1.25 milliamps now, and 1.5 with the magnet. She left it the same as before because of the discomfort and breathing issues I was having. We will see what happens when I see her next week. Fingers crossed!
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  #226  
Old 05-31-2014, 08:31 AM
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Well, here's a discouraging piece of information I read yesterday while doing more research on VNS. The article stated that VNS is most effective when started within two years of diagnosis of epilepsy, and after 2 or 3 med failures. For me it was 32 years (at least) and 5 failures. The thing is, though, I think that many insurance companies will not cover the procedure unless your E is considered refractory, and I don't know if 2 years and 2 meds would qualify for that. Oh well. On with my Saturday.
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  #227  
Old 05-31-2014, 10:24 AM
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On the other hand, VNS has only been approved since 1997 in the U.S. -- so I think the data set isn't all that complete. I hope you're an outlier Arnie, and feel better soon.
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  #228  
Old 05-31-2014, 11:10 AM
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Originally Posted by Nakamova View Post:
On the other hand, VNS has only been approved since 1997 in the U.S. -- so I think the data set isn't all that complete.
And 1997 was the year I had my first VNS put in. After a failed brain surgery, so I do agree with you Nak-- the data isn't all that complete. Plus, I was waiting for my neurosurgeon to return from his training to do the VNS, since it was so new and I was sooo wanting something to control my seizures. And they are always improving the generator. The one that I originally had implanted isn't even made any more because it only lasted four years. Now they last for 10-15 years before they need to be replaced. The latest one I had replaced was so small compared to the first one I had.

Plus, don't believe everything you read.(except what I tell you) Ha!
The VNS has not worked for a lot of folks and for a lot it made things worse. But we are all different and what works for one may or may not work for someone else. For me, the VNS was a godsend. After my failed brain surgery, it has made my seizures much easier to control. I'm not saying it was easy or that we got the seizures controlled from the get go, but after trying different settings, we finally found something that worked for me.
You be the judge for what works for you.
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  #229  
Old 05-31-2014, 11:48 AM
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I'm still looking at all of this as a bump (or several bumps) in the road that will eventually be straightened out, and that the VNS will work for me. Of course it's kind of discouraging, but I want to keep the thread up to date and be honest about what's going on. I do have to remind myself, as you guys were saying above, that VNS is a relatively new intervention, and even a new category of intervention, so data are being gathered all the time. Cint, you were pretty much a guinea pig, and clearly we are not at a point where we know what the best parameters are and how to tweak it for individuals.
Thanks!

Onward and upward!
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  #230  
Old 06-05-2014, 10:40 AM
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OK, time for a report on yesterday's visit to the epileptologist: As y'all know I've been having problems with discomfort, hoarseness, choking (mostly on liquids) and, worst of all, increasing sleep apnea. I've been turning the vns off at night so I can continue to breathe!
I told all this to the doc, and she was kind of discouraged at all the side-effectsm as well as the fact that I've had more seizures in the past three months than I did in the same period last year. I told her about increasing my Lamictal from 400 to 500 mg. per day, and spreading it out more (1 at 0600, 1 at noon, one at 1800 and 2 at bedtime) to see if that would help with the extreme tiredness that has always come on when I've tried to increase the lamictal. I think it has helped, actually, because I've felt fine for the past few days and the exhausted feeling usually hits immediately.
As for the vns, she lowered the setting from 1.25 to .75, which is kind of a step back, but if it helps my body get used to it, allows me to leave it on all the time, and eventually lets us increase the current to therapeutic levels it will be worth it.
I told her I really don't want to try any other meds right now because I have had bad luck with them in the past. Lots of side-effects and no seizure reduction. She is in agreement with me that I try this for at at least a year or 18 months, but she said that if we don't get any reasonable results she will push me to consider surgery. I don't like the idea of that, but I guess I will cross that bridge when I come to it.
The good news is that most of the unpleasant side-effects seem to have diminished, and apparently I had no sleep apnea or weird breathing noises last night, so I won't have to worry about turning it off.
I'll be seeing her again in early July, unless something dramatic happens and I have to call sooner. I can't see that happening, but, as we all know, you can never be sure just what is going to happen with epilepsy!

Carry on!
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  #231  
Old 06-14-2014, 08:03 AM
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Well, another week has come and gone. I wish I could say things are better with the vns, but unfortunately they are not. The day after I posted the above update I started having the sleep apnea again, as well as the other snoring-type sounds. I have turned it off every night since then. During the day it's less annoying. At the lower current I don't feel it every time, but I still notice it probably 1/3 to 1/2 the time. It's mildly uncomfortable, I still choke occasionally, and as the day goes on and I talk more the hoarseness becomes more pronounced and more intrusive. When I swipe the magnet and hit myself with 1.5 mA it hurts like heck. I've decided not to use the magnet any more, since it never really did any good anyway. I've taken now to turning the vns at 6 or 7 in the evening to get a longer break from it.
As for the lamotrigine, I decided to increase it to 550 per day on the 6th, and I'm going to bump it to 600 today, still 4 times per day. Although I haven't had any actual complex partial seizures since June 2, I've had a number of the sort of "gasp" episodes which I count as "epileptiform activity", but not a seizure that I record. I think the 4 times a day dosing has fixed the tiredness problem because I'm not feeling drowsy at all! Wouldn't it be ironic if all I needed was an increase in meds and a different dosing schedule? I will have to wait a few months, though, to see if there is a real reduction or if it's just the natural fluctuation of seizure frequency. Last June, with no vns and 400 mg. per day of lamotrigine, I only had 14 seizures, and had a total of 43 in April, May and June together. I've had 8 so far this month and a total of 44 since April, so there really isn't an improvement, is there? Now that I've started using SeizureTracker to look for patterns I notice that I've had fewer seizures in the spring and summer.
OK, enough for now. Time to drink more coffee and practice the piano.

Carry on, my friends!
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  #232  
Old 06-14-2014, 10:00 AM
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It's odd that you mention the seasons. My old epileptologist, 15 years back, asked me whether I got sleepy from the cold. He said it was the epilepsy, although he didn't give me any detail.
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  #233  
Old 06-23-2014, 11:03 AM
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I looked up what medicare and Medicaid will cover for me yesterday and it was 2 years and 2-3 meds. I'm very thankful as that means I can have mine.
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  #234  
Old 07-03-2014, 10:22 AM
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Well, the good news is that I have been seizure free for a month! The not-so-good news is that it almost certainly had nothing to do with the VNS or with much of anything that my epileptologist did. I kind of feel like I am back to being my own doctor.
As I have said in earlier posts here, the vns has been causing a number of side-effects, including sleep apnea, a fair amount of hoarseness, trouble breathing, and choking on liquids if I happen to be drinking something, or even have saliva in my mouth when it cycles on! It also was only set at .75, so it wasn't a high enough setting to do much, and I was turning it off for 8-10 hours a day. Anyhow, I told my doc that I thought we should turn it off, at least for a couple of months, and see how things go with the changes I made in my medication regime. I emphasize that the changes were the result of research that I did, and her main contribution was that she had ordered a lamictal level to be drawn, which is the first time in probably 20 years that that has happened. I found out I was at the bottom of the therapeutic range so I had a lot of room to play with.
I am going to start another thread about my meds and about SeizureTracker, which is what helped me figure out how to change my med schedule and dosing to eliminate the side-effects I was having. The epileptologist was very impressed with all the information on my seizures I had gotten from SeizureTracker. She had never heard of it, which was disappointing. I think I mentioned that she had also never heard of face-blindness (prosopagnosia) until I told her about it, even though it is closely associated with temporal lobe epilepsy.

Well, enough of that for now. I have places to go and things to do so I had better get to it.

PS: The vns has been off for about 2 days now and I can't say that I miss it.

Onward and upward!
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  #235  
Old 07-03-2014, 10:59 AM
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Oh, dear, Arnie, this is bad news on two counts--the VNS, obviously, but also the epileptologist. Never heard of face blindness? That's pretty crazy. It does sound like all those side effects are too much to tolerate. Have you asked the Cyberonics guys if they usually disappear at this point with other patients? I'd love to hear what you've gained from Seizuretracker. If your new thread is not in the kitchen, please will you give us a link here?
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  #236  
Old 07-03-2014, 11:18 AM
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Thanks for the good wishes, Kirsten. I haven't talked to the Cyberonics people, but from what I have read and the people I have talked to here and what my doc said, the symptoms should have abated by now, especially on such a low setting, but they seem to be getting worse. I will start the Seizuretracker thread in The Kitchen in the next day or so. I will probably be kind of busy for a while but I want to get that one going, especially because I think it was someone here, (I don't remember who! ) who first told me about Seizuretracker.

Catch ya later!

For all of you who live in the US, have a great holiday weekend and don't blow your fingers off with a firecracker!
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  #237  
Old 07-03-2014, 11:32 AM
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Arnie, I am so sorry that the VNS did not work for you.

Were you told that the VNS works by the rule of 3's? 1/3rd it works great for epilepsy. The second third it works somewhat but not completely. The third third it does not work for at all.

I am very sorry that you fell into the last third. I was hoping it would work for you.

I did not like the odds, so I never had a VNS implanted in me.
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  #238  
Old 07-03-2014, 11:49 AM
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Originally Posted by arnie View Post:
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Me neither.
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  #239  
Old 07-03-2014, 02:05 PM
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I was hoping I would be in the 2/3 that had at least some improvement because I would have liked to been able to decrease my meds. Not only did it not do anything for my seizures but the side-effects were getting worse instead of better. (I know, though, that had I been able to get it to a higher setting for a longer period of time it might have worked on the seizures, but, oh well.)

I obviously won't have it taken out so at some point I may give it a shot again. We'll see.
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Old 07-03-2014, 07:48 PM
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So sorry you have not seen improvement with the VNS. What is the plan now?
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