What do you mean?? Could you be a little more specific?

Army Vet

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So I've been seeing this new VA neurologist for about 6 months now. I like him because he is trying some new stuff (definition of insanity: doing the same thing over and over again and expecting different results) and changing some settings on my VNS. I've seen him 3 times now. One via camera and two in person. I have one this Friday and am interested what he has planned this time (probably to bump my VNS up).

However, every time I have seen him in person, I have to describe my most seizures (who, what, when, where, why). Sounds reasonable. He needs to know details so he can make an analysis. Okay, I was here, just got through doing such-n-such. I was with my mom. Lasted about 90 seconds etc (of course I gave him more details than that; just demonstrating). I remember having a "weird" feeling like I was there, but didn't have control of my body. Light headed. Feeling some "fear" (kinda like that feeling the exact moment you start to go down a roller coaster). I believe it was an aura. Gave him as much detail as I could both from words and memory. I asked my mom later if I had a seizure because I remember the aura, but wasn't sure and DEFINITELY did NOT remember any of my movements during the seizure. She confirmed. Lasted 90 seconds and I chuckled and/or picked at my clothes and was non responsive (my usual symptoms).

So I told him everything I could remember and had stored on my phone plus what my mom had told me. Of course with COVID, the VA does NOT allow anyone other than the patient 🙄 So after telling him everything that I could in as much detail and what does he say?

"What do you mean, weird feeling??"

Huh?!

He was referring to my description of my aura! Or at least what I believe was an aura. Well I just told you doc! (see above description) and said so. And repeated what I had just said.

"Could you be a little more specific?"

No, not really. I can't put it into any other words that fit my vocabulary lol.

Anyway, has this happened to any of you? Any recommendations? Again, I like the guy, but it's kind of annoying when I have to repeat myself about something very strange and don't even like to talk about since it feels so weird, not to mention very, very difficult to describe.
 

CQ:)

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I think I understand where you're at they want to know what your auras are so it can help them more. I'm assuming you dont remember much or it is pretty much impossible to desicribe.

Before my surgery my aura was a seizure like dream and my old neuro actually got used to me calling my seizures funny feelings.
He did like alot of detail though

When I was referred to the epiologist he asked me to desicribe the aura, i said i can never remember it until i have the seizure but it involves people so he asked different questions about it eg real people, fictional people, people i knew so i had to try to answer as well as I could.

But now I'm through the epilepsy clinic, they have all they need so all my neuro wants to know each follow up is total of seizures, any changes or concerns and total headaches.
 

Sabbo

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I also know what you mean. I used to try & describe "weird feelings" I'd have--nobody could understand them. When I (finally) had one during an EEG, they were able to diagnose them as simple partials.
 

Porkette

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This sounds just like an aura. When I have my aura seizures I start to see colors of the rainbow flashing back and forth from one eye to the
other and then I get a nervous feeling in my stomach like butterflies and I'm aware of what's going on the entire time, after that
I will blank out and have either an absence or complex partial seizure.

Years ago my neuro told me the moment I started to feel an aura seizure start to tighten up all the muscles in my body and
make my hands into tight fists and if I do it quick enough it will stop the seizure. Give that a try and see if it helps.

Wishing You only the Best and May God Bless You!

Sue
 

valeriedl

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So I've been seeing this new VA neurologist for about 6 months now. I like him because he is trying some new stuff (definition of insanity: doing the same thing over and over again and expecting different results) and changing some settings on my VNS. I've seen him 3 times now. One via camera and two in person. I have one this Friday and am interested what he has planned this time (probably to bump my VNS up).

However, every time I have seen him in person, I have to describe my most seizures (who, what, when, where, why). Sounds reasonable. He needs to know details so he can make an analysis. Okay, I was here, just got through doing such-n-such. I was with my mom. Lasted about 90 seconds etc (of course I gave him more details than that; just demonstrating). I remember having a "weird" feeling like I was there, but didn't have control of my body. Light headed. Feeling some "fear" (kinda like that feeling the exact moment you start to go down a roller coaster). I believe it was an aura. Gave him as much detail as I could both from words and memory. I asked my mom later if I had a seizure because I remember the aura, but wasn't sure and DEFINITELY did NOT remember any of my movements during the seizure. She confirmed. Lasted 90 seconds and I chuckled and/or picked at my clothes and was non responsive (my usual symptoms).

So I told him everything I could remember and had stored on my phone plus what my mom had told me. Of course with COVID, the VA does NOT allow anyone other than the patient 🙄 So after telling him everything that I could in as much detail and what does he say?

"What do you mean, weird feeling??"

Huh?!

He was referring to my description of my aura! Or at least what I believe was an aura. Well I just told you doc! (see above description) and said so. And repeated what I had just said.

"Could you be a little more specific?"

No, not really. I can't put it into any other words that fit my vocabulary lol.

Anyway, has this happened to any of you? Any recommendations? Again, I like the guy, but it's kind of annoying when I have to repeat myself about something very strange and don't even like to talk about since it feels so weird, not to mention very, very difficult to describe.
Because of COVID and I believe it's because I have epilepsy, I am aloud to have one person to come in to dr visits, all types, with me. I need to have another person with me because half the time I'm unable to answer questions asked because I don't know what the answer is - especially visits with the neurologist. Before COVID I could have more.

I don't know if it is because it's the VA but I'd ask about it. Letting them know you have epilepsy and explaining why you need to have someone else at visits with you.
 

Army Vet

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Thank you all for your comments and suggestions. The appointment went better as far as having to be "more specific" than I could be with no one there to describe my actions. As expected, he turned my VNS settings up a little, set it to go off more frequently and for longer durations and we're going to see what happens from there. He told me it was set fairly low and not allowed to be nearly as effective with its capabilities. When he did it the first time I was holding on for dear life, waiting to be choked! 😱 However, he did it and I could feel a little tingle, but nothing like being gagged. I had been using my magnet throughout the month and built up more of a tolerance and he set it up again. I forget the setting, but it is still "below average" as far as it being more effective (granted everyone is different). I seriously believe my previous doctor was going up a couple of levels at one time. Maybe he didn't know what he was doing?? Maybe he didn't want to get rid of a patient who had the VA paying him?? Who knows lol. I don't feel "cheated" per se, but it does make me wonder why this happened... anyway, water under the bridge.
 

valeriedl

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As expected, he turned my VNS settings up a little, set it to go off more frequently and for longer durations and we're going to see what happens from there. He told me it was set fairly low and not allowed to be nearly as effective with its capabilities.
When you get a VNS the settings are low. It is slowly worked up to find out where it works best for you. Your neuro might want to see if you are able to get off of any meds also since you have a VNS. I got my first VNS in 2007, I had to get a second in 2013 because the battery died in the first. My neuro did this when I'd originally gotten my VNS and it took a good while to figure out what settings worked best and meds with it too. We were hoping to get off of all my meds but I was able to get off of one by doing this.

When he did it the first time I was holding on for dear life, waiting to be choked! 😱 However, he did it and I could feel a little tingle, but nothing like being gagged. I had been using my magnet throughout the month and built up more of a tolerance and he set it up again.
I'm not sure what you mean by this? At first, and any time when the settings are moved up, you will feel a small tingle in your throat. It might be a few hours or a few days then you get used to it don't feel it anymore. Any time you use your magnet you do feel the tingle and it is very strong. I don't know what you mean by building up a tolerance?
 

Army Vet

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I'm not sure what you mean by this? At first, and any time when the settings are moved up, you will feel a small tingle in your throat. It might be a few hours or a few days then you get used to it don't feel it anymore. Any time you use your magnet you do feel the tingle and it is very strong. I don't know what you mean by building up a tolerance?
Hi valeriedl,

Only took me three months to respond 😂😳

By building up a tolerance I mean that it somewhat felt like someone kinda stabbed (jabbed) me in the neck at first. The more I swiped the magnet, the more I got used to it. I see him again in about a month. The magnet is set one notch higher than the current setting it's on all the time. My previous doctor set it up to where instead of a small jab it felt more like a karate chop to the throat and made me gag for a minute. That's where my current doc set it up some and then recommended that I swipe the magnet a few times a day to get used to (tolerate) the upper setting. This made it to where I could build it up some and possibly make it more affective and hopefully get off some of my meds.

I just posted a thread about drowsiness. Maybe I can get off a med or two and help my overall being as you stated. We'll see.
 

valeriedl

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How are things working for you with the VNS now Army Vet? Has it helped reduce the number of seizures you're having? How often are using the magnet now? Is the magnet helping stop seizures when you use it?

Hope things are going good!
 

Army Vet

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Hi valeriedl,

I’m pretty sure the VNS has helped since I got it. I was having simple partials all the time throughout the week when I first started back in 2009. Then in six months lamictal helped and I was seizure-free for about three years. Then they came back and haven't gone away since 2013 with multiple medications tried (still on three right now). Once I got the VNS in Dec 2015, they got better. Instead of 3-4 (or more) a week, now it's about 3-4 a month.

Just saw the doc this Friday. He noticed the battery is flirting with death. So he is putting an order in to the VA for a replacement. This one will be an upgrade since it is going to detect heart rate as well. Go from 75 bpm to 120 quickly, something must be wrong. Gradually go up as if you're exercising, then nothing will be detected. Supposedly going to have it done in December because he wants to have me back by January to check the settings. He also bumped up the amps again as expected. I still use the magnet to "build up tolerance" and it's doing better.

Anyway, it's going to be an interesting couple of months coming up.

Hope all is well.
 

valeriedl

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When my battery got bad and he gave me the new VNS I can't remember what the settings were that he started with. I think he did still have to play around with the VNS settings to find out which one worked best. I still have to use the magnet too. My number of seizures are about the same as yours too.

I don't think mine has anything to do with my heart rate. I'd ask him why it does, I'm curious. Let me know when you find out. Ask him why he's going up so quickly too, is there a reason?

Hoping these next few months are going to be good!
 

Army Vet

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From my understanding, the heart rate, for some people, jumps higher out of nowhere right before a seizure. Unlike exercising, where it gradually goes up at a steady pace, seizures make some people’s heart rate jump up out of nowhere. Therefore the VNS will monitor this and depending on what they set the sensitivity at (ie a 30% change within 10 seconds; I don’t know how realistic these numbers are, just pure examples) it will be the equivalence of swiping the magnet.

As for him going up so fast, he said it was set fairly low. How low is low, I dunno. As mentioned before, my first neurologist was doing (or not doing) something that made it go up too fast (or something) and therefore stopped increasing it from there. I meant to ask him what it was being set to this time, but we got to discussing about the replacement and I forgot about it.

Reading up on it, 1.5 to 1.75 mA would be a “standard” setting for the output. I think I was at 0.25 or 0.50. I forget. I know everyone is different, but I tend to agree with him that it seemed kinda low. But as I’ve said many other times, supposedly the next step (a 0.25 mA increase) was making me suffocate. So I think the other doc went up a 0.5 mA increment in one visit instead of 0.25 mA. As for doing it too fast, my appointments have been 4-5 months apart. Usually 3-6 months is a standard increase time.
 
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