Know Anything About It?

[UFC]

I went into the neurologist's office a little while ago and got yelled at for not taking my meds [I know, I am a terrible person].
I asked if there was an alternative and he said, of course, surgery.
I only have absent seizures and occasionally grand mals so I thought that was a bit excessive.
He told me about something relatively new [I think] called vagus nerve stimulator.
I researched it a bit and really want to have it done.
My mom is extremely paranoid and doesn't want to do anything unnecessary.
Basically I was wondering if anyone knew anything about this, had it done, or knows someone who had it done.
Anything is helpful, thank you so much ^_^

 

[RobinN]

I think there are more alternatives than you have been told about.
My daughter only had tonic clonic seizures, for the past two years. She was originally put on meds for it and we had terrible results. I wasn't willing to put her through that in the hopes that it would get better.

She is now med free, and she has finished her first 20 sessions of neurofeedback. I have written a journal of the experience below, and will continue writing as we do the additional treatments at home.

I think you should consider all alternatives before implanting something in your brain. There are many negative results from this treatment. Far too many for it to be a consideration for my daughter. I actually would choose surgery I think, before the VNS.

 

[skillefer]

There are a lot more alternatives then VNS. Stop and think. You're talking about cutting your head open. That, to me, is a bit extreme if you're only having absence and an occasional grand mal. And it doesn't work for everybody.

Seriously, if you don't want to take meds, then look into the alternative treatments. But if your meds work for you, and the side effects aren't bad, then consider taking the meds responsibly.

 

[speber]

Well, you're not really 'cutting your head open'.....

...but you are placing a metal coil around your vagus nerve that can give you grief in MANY ways!

1) it may not help at all!

2) if you decide to have the VNS removed, it is my understanding the first option is to actually LEAVE THE METAL COIL IN YOU!!!.......not for me!



The VNS stimulator works for MANY people...don't get me wrong...I am ALL FOR relief from what ails you! But I am a bigger proponent of:

• knowing what the reprocussions of ANY ALTERNATIVE CHOICE are... and feeling fully comfortable with this before 'jumping in'!
• fully researching the available options. I've become all to aware that many docs are too quick to throw one or two options ONLY at you and stop there due to their OWN failings! Do your research! It's YOUR body! We're here to help however we can...usually by pointing you to others who have similar experience.

Check out Birdbomb's ...
...she's got personal experience I can't speak for!

Peace
Speber
:rock:

 

[brain]

There's a lot of alternatives and choices still around,
I was born with it, and I've not had surgery yet. And
like Bernard (The Host) says, "The Well Hasn't Run Dry
Yet ...."

But I must imply, I've been yelled at, scolded at, bantered
at, yadda, yadda, yadda - by Neurologists & Doctors for
decades. You might consider "Making mountains out of
molehills" a good form of an illustration.

However when I look back - I realize now; they WERE right
for I didn't know or understand these things, so as times
rolled on, I became very precise and exceptionally careful
and "Being on the dot" would be the best way to put it.

It's very important to follow your Neurologist or Epiletologist's
instructions right down to the core; even if it means when he
or she says take this at this such and such time, they mean
for you to take it on such and such time - not when you feel
like taking it or otherwise it knocks everything off cycle and
it causes "humps" (gaps where the medication(s) begins to
wane off) or "peaks" (where medication(s) is at its highest level).

If you take it when you're not scheduled to take it, you run
the high risk of having gaps and extreme peaks; putting your
own self at a risk for seizure(s) or pushing your seizure threshold
up, the very thing the Doctor wants to avoid. The Doctor cannot
monitor you if you're taking the medication(s) not according to
their plan set up for you.

And plus - if the Doctor says "Do not do this, or that". He or She
means do not do this or that. Example, some people like to drink
alcohol, and alcohol has a known effect on AEDS
and in turn, if the Doctor says "NO" but you are doing it anyway,
and experiencing seizures; you're only frustrating the Doctor and
only causing complications of being non-compliant.

This is only an illustration and example, not directed at you or
anyone else for that matter - but to give you an idea of how
critical and important it is to have a close established ties and
rapport with your Neurologist or Epileptologist. You have to work
together as a team, or otherwise it just won't work.

All in all - the final point perspective is: It takes patience and time.

--------------------------

I hope the above post I made will give you some clarifications
and ideas of everything in generalized short viewpoint; but not
as a whole ball park field. Another area to look besides the VNS
website below is also clicking on the Epilepsy Foundation Logo
below to find out more and clicking on the COPING WITH EPILEPSY
RESOURCE CENTER and learn more about alternatives that are
available as well!

Hope this all helps!

 

[Nenne]

hey,

Im also thinking about it! im not really sure what to do, but where i came from we dont really have any other options then VNS, surgery or meds. But as everybody says u should think about it! is it worth the side effects? i have made a list and im talking to my family about it and soon im gonne meet up the doc and im gonne write check list what to ask and stuff!!!

if i had other choices like neurofeedback i would have tried that first but now i dont so thats i guess why im very drawn to VNS because as u said surgery is a bit risky. And seriusly i like my brain as it is.

 

[alivenwell]

For me, I take medication every day, and all day long. On busy days, I honestly do not recall if I have taken the latest dosage.

I have to peek in one of those pill containers with pre-counted medication for the current day. For the sake of a back-up supply, this container houses six additional days worth of medication.

Along with stress management (a good exercise), I have had complete control of seizures which can include the type that you describe. I have no VNS either.

 

[UFC]

It goes in around the chest, not your head ^_^
Apparently I would have a sick nasty scar.
The reason I would do something so serious is that I don't have seizures every so often, I have at least twenty a day.
The less I take my meds, the more frequent I have them and if I practically never take them, I get a grand mal.
Usually in the morning while in the shower--the source of many jokes in my family *head shake*
Anyways, what exactly IS neurofeedback?
Like, definition wise...but, you know--seventeen year old speak XD

 

[RobinN]

While exercising the brain, it takes it from instability to a more stable place. Imagine going to the gym and only lifting weights on one side of your body, and ignoring the other side. This trains the brain to use all areas more efficiently. There are no scars.

http://youtube.com/user/othmerk

 

[UFC]

Oh, that sounds kinda cool.
Is it a very long process?
Like, what does it entail?
Totally calling up Dr. Dude tomorrow, thanks guys ^_^

 

[RobinN]

Thirty minutes + time for hellos and good byes
They run through a "game" a number of times in that time frame.
My daughter gets to sit in a nice comfy chair.
We keep a journal of any differences in sleep pattern, or emotional stability over the week, and discuss it when we arrive.

 

[Bernard]

You can also read more about neurofeedback in the links in my signature.