Off to the Doctor Today

[Mr. Pibb]

Well I am off to the Dr. in just a couple of hours and I hope to come away with more answers than questions we'll see I have had epilepsy for a long time 40+ yrs. with controlled sz for most of my life if the Meds are working I am fine for the most part. But man do I hate having to take all the Meds. I am sure many of you can relate. Well this visit I hope to have more accurate info that I can have a hand Like the specific area affected of my brain all the specifics results from past EEG's mri' hopefully I walk out of there with a little more clarity so that if asked what type of E do you have I can say I have X located in Y and sorry but there are no other options for you ie surgery or other treatment the science world has much to offer and I am not afraid to be part of it Lord knows i've tried many Meds and yes I will probably take them for life but what if. Well time to go maybe when I get back I will have an answer or two.
Thank's for the ear Jerry

 

[Birdbomb]

Jerry you might want to make notes to take with you. If you have an outline of the issues to be discussed, at least with it written down, you won't forget! I do this myself and when I have surgery, I usually have a legal pad filled with questions.

 

[Bernard]

op:

 

[Mr. Pibb]

So It went okay today

This was a better appointment than the last we at least seem to be traveling down he same road and here is the best part in the same direction my questions for the most part got answered about the lack of MRI's or in his view no need for any more as nothing in my health has any drastic changes so why waste the time and money seems as if he actually might be looking out for me. On the issue on the E EEG same thing nothing has changed over the last so many years to indicate any changes. we both agree that I am one of those individuals that will need increased Meds as I get older not decreases as most bummer we have tried and it hasn't worked.

So up came the mention of VNS I mentioned this to the Dr. before the on E i am seeing now ( man do I wish he was around he was good at least understanding about E because like many of us here at cwe he has E and could relate first hand about what you were talking about as often he was dealing with the same issues) So back to the visit at hand this the second time VNS has come up I now have a packet about it a dvd and some other info and a nurse to talk to to get more info answers to my question I know that with the way my E is I will be on Meds for life I can live with that but if the VNS has a chance of working why not I realize it is no silver bullet but it beats lead
Jerry

 

[Birdbomb]

Well, Jerry, if you want to know about VNS, it's time to do your homework.

Download the both the Patient and Physician Manuals

Now READ them!

Put my site The VNS Message Board down as one of the places to visit. We have information and first hand personal experiences. What sets my board apart is I accept NO fundings of any kind from Cyberonics (the only maker of VNS), stock or subsidiaries. So what you read is the TRUTH and absolutely NO marketing puffery.

VNS is a crap shoot. You have about a 30% chance of it being a benefit for you. Surgery, no matter how invasive, should be the very LAST avenue to consider. Once you commit to this, you need to understand the electrodes that wrap around the vagus nerve are NEVER meant to be removed. In some rare cases, they have been, but the chance of detrimental damage is just too great.

Follow the banner to my site, register then ask any questions you want.

 

[Bernard]

Hey Jerry, sorry to hear that the docs are resigned to just increasing meds as the only treatment avenue (outside of the VNS).

The more I read about brain plasticity, drugs and such, the more convinced I am that AEDs are just a short term solution for dampening brain activity in a blanket fashion, but do nothing to help the brain retrain itself to work without seizing. I'd highly recommend you look into EEG neurofeedback or CBT as they offer the promise of helping the brain retrain itself.

If they don't work, you can always try the VNS, but IMO, the VNS is just a crude form of neurofeedback.

 

[brain]

Jerry:

I have to agree with both Birdy and
Bernard's postings. They are both
correct in both perspectives.

As unfortunate as it seems - FDA had
to go so far as to issue a WARNING on
VNS and in addition I've been in many
forums and boards; and if you would
only read - how many people regretted
and wished they'd never had the VNS
done. It would make you think twice!

I was encouraged to look into VNS, but
I did my homework online because my
Epi wouldn't answer my questions at all.
I'm glad I looked online; even though
he had informed me that there were too
many negative people online about the
VNS.


I WILL admit there have been a few
successful VNS operations - when it was
done properly and correctly; but when
you begin to look at the overall lifespan
and the battery life, and so on - the
pros and cons of everything and begin
to balance everything out - you begin
to wonder is it really worth it?

The truth is.... Neuroscience is
progressing very quickly. I will be very
blunt on this remark.

There is RNS Study ongoing right now
that's more advanced than VNS and
looks more promising than what is
available now, you might want to even
consider becoming a study case for
RNS as they're looking for people.

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

HERE'S A STORY:

But the way things are moving so
quickly think of it this way. Remember
how Windows 95 was considered so
"advanced"? And when Windows 98
came along - people hoarded it, and
Microsoft had a hard time promoting
the other latest versions because
people were so gung-ho and glued to
Windows 98.

Windows ME was garbage, 2000 was a
joke, then comes XP ... and Microsoft
begins to threaten to cut-off the
Windows Updates on 98! Well people
didn't like the Win XP; they wanted the
98. So Microsoft came up with the idea
of throwing in the "Classic" mode so
that people can revert to the Windows
98 Classic Mode and be on XP! (I'm one
of the guilty ones who runs on the
Classic Mode on XP :embarrassed

And this made many people happy, they
got rid of the Windows 98 and hoarded
the XP's ... and now Microsoft has
VISTA.... but people aren't ready to
give up their XP's yet.


The moral of the story above is - you
will always have people who will be
quick to jump the gun to every new
thing in sight, then you will also always
have people who are set in their ways.

The Solution is:
Proceed with caution and never move
out of desperation, no matter what!

 

[Mr. Pibb]

Options, options, options

Thanks all that have replied; Life is short and easy, right, well that was worth a try the frustrating part of this is when you mention to the Dr. that you would be interested in trying or knowing if having a veeg or what I have thought would be the cats meow is a unit that came home with me that was worn 24/7 mapped out me for x long. answer that I got more than likely to you their would be no benefit to that test as the piddling test of a 40 min EEG that said my brain activity was in the realm of expected result Never mind that when I was in the hospital for three days of observation do to a med levels problem know one thought that this might be the perfect time to see what the hell is going on Meaning an EEG extended Another story. My other option is to stop trying the different med and go back to the days of old when I took Mysoline 1000mg and 400mg of Dilantin they so far have been the best of the bunch but with all the new candies that are coming out one of them has got to be better than My and Di Lamictal had my first time day sz in over 25yrs, mine are nocturnal for the most part from that day forth trick or treat 1997 them on to tegeratal lost weight was difficult to get the level in check Keppra didn't work loss of hand strength and coordination got to the point that I couldn't pick up a soup can or a pop Zonegran great drug the best coordination that i ever had in my life could hold rock steady I shoot completive archery side affect while only minor was that I went tonic with it Zone turned out to be the only part of that med that had any meaning to it one could be in the zone if only didn't leave me stoned. spiders!! Back to the Mysoline Dilantin combo seems to be the old standby. Along comes Lyrica, my wife gives the green light and now that brings us up to date the levels a 600mg of lyica and 530 of Dilantin going fairly well although I'm wondering how long it will last only side affect that this med has is that never in my life have I or am having what I will call the twinges for lack of better way to describe it sometimes its like a pulse that I feel anywhere throughout the body only for a millisecond. reality is that I could live out this life of mine and it wouldn't be to bad the way that it is probably the best when on the old school Meds. Maybe I am fool to try these new Meds but hey why not there may actually might be one or two out there that makes life somewhat bearable. Technology is moving at us in leaps and bounds giving us options ( I happen to fall into the high risk taker portion of life things that I think would be great to do like jump out of an airplane or self contained underwater breasting apparatus both of which due to having epilepsy are out drat. ) Over the last ten years I have questioned the BS and have been told wait there are better advancements on their way question that I have to asked do I want to be part of the advancements or do I sit back and watch from the sidelines.

 

[Bernard]

Drug Resistant Epilepsy

Alternative Epilepsy Treatments

HTH!