my vns experience

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One other thing about my recent appointment. She had told me on the phone after my first visit that she had looked at my supposedly normal MRI and said that she had seen a lot of abnormalities. When I was there this time she showed me the MRI and pointed out the things she had seen, which were very obvious when you knew what you were looking at. I don't remember all the terminology, but there were several irregularities; some "bright areas", a few big scars, the left side was noticeably smaller than the right and less full, etc. There was also what appeared to be scar tissue in the area that deals with facial recognition (the fusiform gyrus) which could explain my face blindness. It was not even close to an "unremarkable" scan which is what the previous interpretation had stated. Also, the scan from 2013 was clearly different from the one that she was able to access from 2007. Just another reason NOT to see a neurologist.

Cheers!
 
WOW Arnie, that is just the reason I abhor those docs. I am sorry that happened to you. I hope you can get to the bottom of this easily. Keep us posted.
 
If anyone else who has a vns would like to chime in with their experiences with the discomfort, hoarseness, etc., and when I can expect it to go away I would appreciate the input. Also, what current is yours set for?

On my last visit the current was increased from 2.75 to 3.00. I'm not sure how often it is set to go of. When the current is increased I may feel it every time it goes off for a day or two then I'm used to it and don't notice it at all.

I do notice that since it's been increased this last time that I might feel it go off. It's just a small tickle in my throat that I can barely feel and only realize that it's happening if I'm thinking about it. Any other time I don't know it's going off at all.

The only time that it hurts is when I use the magnet when I'm not having a seizure. I'll have pain on the left side of my throat and cough like crazy for a few minutes.

If I am having a seizure, depending on what type and how bad, I may or may not feel it when I use the magnet. This is one way that I know I'm actually having a seizure.

If I think I'm having a simple partial I'll use it. If I don't feel it go off then I am having/starting to have the seizure. If I feel it and start coughing then I'm not having a seizure.

When I'm having a complex I'm blacked out and someone else is using the magnet on me. One way that they know that I'm coming out of the seizure is that I'll start coughing after they use the magnet.

A few nights ago I was starting to have a seizure. My head was actually spinning, I had very bad double vision and I couldn't walk strait. I used the magnet on myself and the tickle was pretty strong but I didn't start coughing. I got into bed and I don't know if I went into a complex and fell asleep after or if I just fell asleep because woke up two hours later.

One side effect (if you call it that?) from the VNS is that my breath doesn't last as long. I may be singing something and can't make it through the whole verse without taking a breath. I only sing in the shower and when I'm cleaning though :lol: I clear my throat a lot too. I have monster burps that I know are caused by the VNS, my family thinks its they are something that I'm faking but I couldn't do that if I tried!
 
One other thing about my recent appointment. She had told me on the phone after my first visit that she had looked at my supposedly normal MRI and said that she had seen a lot of abnormalities. When I was there this time she showed me the MRI and pointed out the things she had seen, which were very obvious when you knew what you were looking at. I don't remember all the terminology, but there were several irregularities; some "bright areas", a few big scars, the left side was noticeably smaller than the right and less full, etc. There was also what appeared to be scar tissue in the area that deals with facial recognition (the fusiform gyrus) which could explain my face blindness. It was not even close to an "unremarkable" scan which is what the previous interpretation had stated. Also, the scan from 2013 was clearly different from the one that she was able to access from 2007. Just another reason NOT to see a neurologist.

Cheers!

I am in total agreement about not seeing "just" a neurologist based on my experience. One piece of that experience also relates to MRIs: I had two MRIs done by a neurologist and was told each time they were "entirely normal". About 6 months later I saw an epileptologist who said the MRIs were too blurry to adequately interpret and provided inadequate coverage of the frontal lobe area (of interest because my seizures were felt to be FLE). He did his own MRI which did show some explanatory abnormalities.
 
Not ignoring, just been incredibly busy since early April. Arnie, I do recall you had a question or two you had asked me. I will review those and posts in more depth since then and update here later. Just saw my own doc yesterday with some interesring results of my own too.

On a quick scan of the posts though, I saw "Vimpat" mentioned. While "the Jury" is still somewhat undecided on Vimpat for me (as I had switched over to it right around the time I had the VNS implanted), in comparason to Trileptal in regards to side affects it is like night and day! I am most certainly doing much better in that respect on Vimpat! You may want to consider Vimpat and discuss this more with your new doctor. However, while I do encourage everyone to continue to keep working towards finding what works for them, I also just want to make it clear to everyone that I am just just sharing how my experience with Vimpat has been, and recommending you speak with your doctor if you're interested in trying it, nothing more. (btw, both my PCP and Neuro, who has a real interest in epilepsy, suggested Vimpat as a an alternative to Trileptal, given the severe issues I was having with the latter)
 
Hi saythatagain. Thanks for the info on Vimpat, and I look forward to hearing the answers to whatever it was that I had asked you, which of course I have forgotten. One reason I don't really want to add anything else to the mix right now is that if I start on a new med and things begin to improve, I may not know if it's the med or the vns. Because of the way my seizures fluctuate it would probably take at least a couple of months to see if the vimpat had made a difference or if it was just the normal variations in my seizure frequency. I'm also a little wary of taking a relatively new med because of the uncertainty of long-term side-effects.
I will put another update here pretty soon because I have a couple of new things to share, but at this minute I have to get back to work. Thanks!
 
I know when I got my VNS everything was messed around with. The current and my meds. Luckily the meds were lessened but it took a while to figure what the good dosage and current should be. Even now the current is still getting adjusted.
 
How long have you had your VNS, Valerie? I am sure I knew at one time, but you know how our memories are. My hoarseness is kind of bad sometimes, too. Do you have problems with that? Any other words of wisdom at this point?
 
How long have you had your VNS, Valerie? I am sure I knew at one time, but you know how our memories are. My hoarseness is kind of bad sometimes, too. Do you have problems with that? Any other words of wisdom at this point?

I got my first VNS in May of 2007. I got my second VNS in Dec 2013.

With the first one my meds had to be messed around a good bit with to figure out what worked best with what current and how often it went off. It took a while to do this, probably over a year. I was put on less meds or lower dosages instead of having things increased. When I got the second one my meds weren't adjusted at all. All the time that I've had the VNS's, first and second, the current and timing have been adjusted, usually increased, depending on how many and how bad my seizures were. At my last visit about 2 months ago the current was increased again because I was having a lot of seizures.

I've been having a lot of seizures I know are caused by things that are going on in my life right now. My grandma passed away and I know that played a huge part in it. Depending on how many seizures I'll still be having I don't know if my neuro will want to change anything because he said he really doesn't want to increase the current any higher than it's at - 3.00. (I think that's what it is, memory's not that great as you can relate to)

I think I may have mentioned these in another post but he only problems that I know I have from the VNS are that I can't keep my breath going as long as I used to. The only way I really know how to describe it is when I'm singing a song I can't make it through a whole verse without loosing my breath. I read that this is a side effect from it.

Another problem, and I'm not sure if it's from the VNS or not but I never did it before I had it, is that I have MONSTER burps. I sound like a lion roaring. My family thinks I'm joking when I do it but I couldn't do it if I tried.

I don't have hoarseness but I think I read that it is a side effect of the VNS. I can't remember if I read the side effects on the VNS website or if I read them in the pamphlet that came with it. But there are a good bit of side effects that it comes with.

I have a printed out list of all my info on it that. It's saved on the computer too. I keep one the fridge so someone can grab in a hurry and one by the computer so I have all my info if I need it when I'm on here. I keep a list in my purse and all of my family has one too. It's all things that you are usually asked when you see a dr or if I end up in the emergency room.

It has on it:
- My name, birthdate, address and phone number
- Emergency contact with their phone number
- That I cannot have an MRI
- That I wear contacts/glasses
- Any other illness that I have/had other than epilepsy
- My PCP and his phone number and my neuro and his phone number
- Meds and anything else that I'm allergic to
- All of the meds that I take, including vitamins, what the dosages are and when I take them. I have written down the name brand and the generic version that I am on
- Any surgeries that I've had, the date I had them, the dr who did them with their phone number
- My pharmacy with their address and phone number
 
HI Val, Thanks for telling me that stuff again. Now that I read it I remember that you already told me. I guess I could have gone back through the thread and found it, unless you had said some of it in another thread somewhere. This memory stuff is really frustrating, ya know? (Of course you do!) That was one of the worst things about the neuropsych eval I had the other day (which I will do a thread on at some point). There were shapes I saw and stories I heard, and after only a couple of minutes a lot of the information from the stories was completely gone, and some of the pictures had completely vanished from my brain, while others were there, either partially or totally. That was both frustrating and discouraging. I know that I have had memory problems for a long time, but this is the first time I've ever actually been formally tested for it, and it's not fun to be officially slapped in the face, so to speak, with how unpredictable my memory really is. I guess that all of us have to do a lot of improvising and pretending to try to cover up for the gaps in our memory, right? Ah well, the show goes on, doesn't it? (That reminds me of an aria called "On with the Motley" from the opera "Pagliacci". Maybe that would make a good thread at some point.)

Onward and upward!
 
I don't know anything about the 'memory stuff' Arnie. Or maybe I just don't remember that I know about it? :ponder:

I've typed those things in a few times and I know that I've done it in more than one thread. I find that it's easier sometimes to ask the question over instead of spending an hour trying to find it in a different thread. Plus I like to type so it's no big deal that I did it all again.

I have to take those memory tests every few years. I can't remember (imagine that?) if it's for my social security or the disability payment I get from the company I worked for.

They showed me a list of numbers then showed me a list of letters. I was asked to tell what the numbers were and the order they were listed in. I was lucky if I could remember what one number was let alone what they all were and the order. They asked me to do the same with the letters after asking me the numbers and I don't think I could remember any of them.

They would read me a story then go on to do some other things. After that I was to tell them the story. The peoples names in the story, where it took place and that it was about. I could barely do that.

They showed me pictures of faces and asked me how they made me feel. Don't know what that had to do with memory exactly? During the first test I took one of the pictures was so funny that I started laughing with tears coming out of my eyes and couldn't quit. They actually had to stop the test until I could calm myself down. Maybe that made them think that I was partially crazy? Don't remember doing that but my family told me about it.
 
I'm not having too good a time with the VNS now, and I think I'm going to email my doc tomorrow. I don't want to wait a couple of weeks til my next appointment. The deal is that: 1) my hoarseness is getting worse. 2) I'm having more shortness of breath when the thing activates. 3) I have problems with choking if I am drinking when it kicks on, which is every 3 minutes. Sometimes I even choke on the saliva that's in my mouth. 4) Perhaps most worrisome is that I'm starting to have actual sleep apnea at night. For quite a while I was making odd breathing noises, but now I am actually stopping breathing momentarily. That just ain't acceptable, and I'm only at 1.25!
As usual, I hold out hope that this can be adjusted and these side-effects will go away, but it's hard not to get a little discouraged and wonder if everything I try is either going to not work or have bad side-effects or both. Probably both, cuz I still haven't come across anything that stops all the complex partials. Oh well. Time will tell.

Onward!!
 
Good luck with the email, and I hope your doctor responds quickly. Sounds more than a little nerve-wracking what you are going through!
 
I'm not having too good a time with the VNS now, and I think I'm going to email my doc tomorrow. I don't want to wait a couple of weeks til my next appointment. The deal is that: 1) my hoarseness is getting worse. 2) I'm having more shortness of breath when the thing activates. 3) I have problems with choking if I am drinking when it kicks on, which is every 3 minutes. Sometimes I even choke on the saliva that's in my mouth. 4) Perhaps most worrisome is that I'm starting to have actual sleep apnea at night. For quite a while I was making odd breathing noises, but now I am actually stopping breathing momentarily. That just ain't acceptable, and I'm only at 1.25!

Arnie,

I initially had a difficult time with the VNS, I had a few choking incidents that scared the crap out of my husband at the time. And breathing issues, too. One time back in early 2000 I think it was, I was suddenly short of breath and then couldn't breath. They said I turned blue and called 911. The paramedics gave me a breathing treatment and then my dr. gave me an inhalant for asthma. I've never had to deal with sleep apnea, tho. My main issues have been breathing, shortness of breath, and swallowing/choking. I had to basically re-learn to eat because I kept choking. I had to cut my bites much smaller and eat slower. But now that I've had the VNS since 1997, most of it has dissipated, except the shortness of breath when I am out walking/bike riding, etc. Mine is set at the highest setting, charging every 3 minutes for 7 seconds.
 
This memory stuff is really frustrating, ya know? (Of course you do!) That was one of the worst things about the neuropsych eval I had the other day (which I will do a thread on at some point).

That was both frustrating and discouraging. I know that I have had memory problems for a long time, but this is the first time I've ever actually been formally tested for it, and it's not fun to be officially slapped in the face, so to speak, with how unpredictable my memory really is. I guess that all of us have to do a lot of improvising and pretending to try to cover up for the gaps in our memory, right?

A lot of us have had the neuropsych evaluation done, so we do know how frustrating it is. I won't need to see a thread to remind me of the frustration. My memory problems even got worse after my temporal lobectomy. Talk about being slapped in the face, how do you think I feel? I have to pretend every day I go out that I remember things that happened just last week or the other day. Or names, or faces. Even remembering if I read this tomorrow. And when I was still married, my husband said to me once "That's unbelievable!" because I could not remember a movie we had seen several weeks ago. I could no longer live with that bully.
 
Boy oh boy, can I relate to what you are saying, Cint. How we have to "fish" when we are talking to people to see if we know them, if we have seen them recently, if they told us yesterday that a meteor had hit their house, whatever. What a stress that is! There will be times in my business when a good customer comes in and needs something (like he has a flat tire and needs it fixed) and if he doesn't have the money I tell him he can pay me next time he's in. When he comes back to pay me I never remember how much he owed me or even that he owed me anything. Fortunately I think most of the people I do that for are ones who will pay me anyway, and I don't usually do IOUs for more than 15 bucks or so, but the issue is more the memory than whether I lose a few bucks here or there.
It's not a natural way to live, but I guess we compensate as best we can, right?
As I know some of us have said here, (at least I THINK we have!) we can read books and watch movies over and over and still be surprised at the ending!
 
ooh, forgetfulness cover up tricks. I'm starting a thread about that.
 
I have to pretend every day I go out that I remember things that happened just last week or the other day. Or names, or faces. Even remembering if I read this tomorrow.

As far as names and faces go my memory is so bad that I've just gotten to the point where I say to the person "I'm sorry but I don't remember your name" or "How do we know each other". Usually though if the person tells me and goes into detail about those things and I still can't remember I'll just say "Oh yea, that's who your are!" and let them do most of the talking because I don't know anything about them. I think I'd be a really good actress because I do this so many times and the person always believes me.

I went to a movie with my husband once and a week later I didn't remember the name of the movie, what it was about and I didn't even remember that we'd gone!


As I know some of us have said here, (at least I THINK we have!) we can read books and watch movies over and over and still be surprised at the ending!

As far as tv shows, books and movies I'm the same way. I always say that there is no such thing as a 'repeat' tv show for me because I can never remember it. I watched my favorite movie the other night. I've seen this movie at least 10 times and could say all the words right along with the actors. I couldn't believe that I didn't remember much of the things that went on during the movie or even how it ended!
 
Arnie,

I initially had a difficult time with the VNS, I had a few choking incidents that scared the crap out of my husband at the time. And breathing issues, too. One time back in early 2000 I think it was, I was suddenly short of breath and then couldn't breath. They said I turned blue and called 911. The paramedics gave me a breathing treatment and then my dr. gave me an inhalant for asthma. I've never had to deal with sleep apnea, tho. My main issues have been breathing, shortness of breath, and swallowing/choking. I had to basically re-learn to eat because I kept choking. I had to cut my bites much smaller and eat slower. But now that I've had the VNS since 1997, most of it has dissipated, except the shortness of breath when I am out walking/bike riding, etc. Mine is set at the highest setting, charging every 3 minutes for 7 seconds.

I'm sorry to hear that you and arnie had problems with the vns like that. I didn't have any problems when I first got it. I'm still having seizures, which I knew that I was probably going to have, but they aren't as bad and not as many.

What is the setting of yours Cint? My neuro increased mine to 3.00 on my last visit and he said that he really doesn't want to go any higher. I can't remember what the on/off timing is, I think he may have increased that on the visit before last. I know he's told me at every visit but I keep forgetting to write it down - and I even have a note book in front of me!
 
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