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Medical Forum / Diseases and Disorders / Epilepsy / March 2005

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seizure frequency ?

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twiggyfr3ak - 04 Mar 2005 00:11 GMT
Hi, i am wondering if anyone can tell me about my seizures. My doc has been
getting me and my partner to log down when a seizure happens. It has come to
us that i have around 0-3 a day from 4-7 days a week. the less i have a week
the longer the seizure is.
I am taking medication for this although it obviously isn't doing much.
Could anyone tell me whether this is alot of seizure frequency or ..well
not. These are complex partials.
Thanks for any replys.

Melx
G.Ross - 04 Mar 2005 00:52 GMT
> Hi, i am wondering if anyone can tell me about my seizures. My doc has
> been
[quoted text clipped - 8 lines]
> Thanks for any replys.
> Melx

Hi.   There are lots of us around here who have or had Complex Partial
seizures.  Many of us are now controlled with medications or other
treatments.
  Which pills are you using?  Some might have comments or tips on
particular pills. Several of them (like my Tegretol CR) are meant to be
taken at a fixed frequency and *not to miss any (many) doses, as some of the
pills can cause a 'withdrawal' effect if stopped abruptly.  Tegretol is one
of those, that's why I mentioned that.
   If you can find a post by Howdy Dave, he has his own website that he's
assembled over last 8? years.
   Another you should have on a bookmark I'll paste below.  Julie's Idaho
website has lots of general information, plus a First Aid chart for Seizures
you could print if it would help others around you.   There's a second one
for First Aid in Water if you like swimming or boating, that was added about
2 years ago.     Bookmark her site too, plus the first aid links if you
think they'd be of use.
   Both their sites have links to the Ep. Foundation of America general
site, but it's at http://efa.org   .    It has a Pills Glossary you could
look at to compare anything you got from your Pharmacy to what you're using.
(It was there that I first found out that Grapefruit Juice would conflict
with my Tegretol.  I already knew about alcohol causing problems for some
people using Anti Ep Drugs (AEDs) .  But as new information is available it
will turn up there, or here.)

   While I think of it too, with any pills you use, how long have you been
using them?  In other words is it 'only' 2-3 weeks, or 3-6 months of longer?
*Some of the pills take a few weeks to get to a stable blood level, then
(hopefully) might only need slight adjustments if they find something that
works for you.   Some of the pills, if you don't get adequate control, they
might add a second one and reduce the first, OR change to another pill or
two.  (I took from about 1993= onset to 1996/7 to get to above stable level.
I had been told to expect 2-3 seizures per month.  The last 2 I had were
late 1997 and mid 1998, plus one sometime mid. 2003.)
  If you have trouble remembering if you took a morning or night time dose,
I keep a 'log' where I write the time I take my scheduled dose, plus I got a
7-day Pill Case from the Druggist.   That latter also helps me to know 7
days in advance when I'll need a Repeat on my Prescription.  I always leave
at least one day's compartment open so I know which Day I'm at !! and I can
compare it with the log page to prevent taking 2 doses by mistake.
   Here's Julie's Idaho website that you should bookmark too.  G./

Hi Mary and G.R.  I've been busy lately, so just now reading this.
Thanks for helping others to find us at Epilepsy Foundation of Idaho.

Julie Walton, Volunteer Webmaster
Epilepsy Foundation of Idaho
http://www.epilepsyidaho.org
twiggyfr3ak - 04 Mar 2005 01:01 GMT
> > Hi, i am wondering if anyone can tell me about my seizures. My doc has
> > been
[quoted text clipped - 56 lines]
> Epilepsy Foundation of Idaho
> http://www.epilepsyidaho.org

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

Hi, i am taking lamotrogine (sp?) ..

thx
melx
G.Ross - 05 Mar 2005 03:42 GMT
>> > Hi, i am wondering if anyone can tell me about my seizures. My doc has
>> > been
[quoted text clipped - 52 lines]
> thx
> melx

I tried a couple of basic searches through that efa.org site at top, and it
pulled up some posts (on other groups?).   Nothing that I could see that you
might find useful, but you could check it yourself to see.    It *appears
that Lamotrogine took me to Lamictal on the charts, so if you do any
searches, e.g. under the medications site on efa.org site (above) you could
try enter lamictal and see if there's anything of use.
  (Your Pharmacy might be able to tell you if there's a Website for the
Manufacturer of your pills if you called them?  Many of the main
manufacturers have their own information sites, on pills they make, where
they might put additional information beyond the basic stuff your Pharmacy
might give with a basic prescription.  *If you find anything, post it here
too, as there are lots of Lurkers who read the group but are too shy to
post, and the information could help them too.)

   *I Know there are people 'around' who use Lamictal.  Barb posted earlier
that she was only able to use it a short time, for Complex Partial type
seizures (same type of seizures that I have, but I use Tegretol and Frisium
to control mine).
  There *might be more replies after the weekend, or later anyway.   Some
people only read the group 3-4x a week, so while there are no replies so
far, there might be something show up between now and e.g. Tues. In the
meantime if you want to look at the efa.org site (above), there's a link to
medications down one of the options then you can type in the Med. Name (try
lamictal), and 'search' or 'find'.  Whatever the seek button is, it's
obvious behind the slot where you type in the med. name.
   Some of the pages have a Printable Option if there are a lot of graphics
on the page, and you can click that first to get a Text only page if you
wanted a hardcopy to print or file for later use.

  I'll keep a note on this and if I find another link over next few days,
I'll post it here (I left a bunch of links I had found on the olde computer
I have disconnected here :-<  that I didn't bring to this newer one).
   Keep checking from time to time, as others might comment shortly,
especially now that they know that you're interested in **Lamictal questions
related to seizure frequency and other's experiences with it.
 I left what I thought was the main part of your questions at Top here, in
case they didn't see your earlier post that it's taken from.  *Some pills
depend on taking them at a fixed rate each day (you probably know) to keep a
working level in your bloodstream.   That's how Tegretol and Dilantin work,
and I assume most of the Anti Ep Drugs.
 The Pill log is a good idea since you might see some pattern or
interaction that you wouldn't notice otherwise.   (A few of mine happened
when I changed the juice type I was using with Tegretol, *then when I went
online, I found out that Grapefruit Juice conflicts with Tegretol... Funny
that, those were the times I had used Grapefruit juice with the AM or PM
doses, and less than 12 hours after that I had a seizure.   Once I stopped
that, the last of my seizures stopped.   They were nearly controlled by that
point though.     G./
Pauline Kramer - 06 Mar 2005 21:44 GMT
i  am on lamical too..what r the side effects if any...this goes for
keppra
Michael - 07 Mar 2005 16:40 GMT
I have been taking many different medications since my seizures began in may
99. Only in Sept of 2004 did a pharmasist suggest I try keppra because it
controlled his wifes seizures immediantly. I lived(?) for five years without
being able to control until I started keppera.

I suffered partials or petit mauls several times daily. Full gran mauls at
any given time. I have been scared homebound since. I have no aura(?) to
speak of of before they occur I just hit the floor and go in my little
routine. I have learned to keep furniture arranged in such a way so as to
give me room to fall.

I still seem to be suffering seizures at night while sleeping. I have the
bites in my mouth still and exhaustion in the morning. As of the last
several weeks I have noticed my left side (effected from the stroke in 98)
has become extremely sore and my muscles really ache. I have tried to
exercise but it seems to make them hurt more.

Good Luck

Peace

Michael

>i  am on lamical too..what r the side effects if any...this goes for
> keppra
G.Ross - 07 Mar 2005 17:15 GMT
>I have been taking many different medications since my seizures began in
>may 99. Only in Sept of 2004 did a pharmacist suggest I try keppra because
[quoted text clipped - 9 lines]
> I still seem to be suffering seizures at night while sleeping. I have the
> bites in my mouth still and exhaustion in the morning.

** Our guards tend to be lower? while we sleep, so some types of seizures
can happen then, which wouldn't always happen during daytime while we're
alert.  Does your Doctor know you have seizures still at night?   They might
adjust the night dose up, e.g. on alternate nights, of whatever it is that
you take, so you're staying controlled all night, plus keep stable blood
levels of whatever you're using all night.
  2)  There's a 'mouthguard' you can get for nocturnal seizures.  If you
have a Dental Plan (insurance) the Dental version is called an Occlusal
Splint and costs about $200? for the impressions and first 'splint',  then
newer splints can be made from above impression taken as part of the '$200',
as needed, for about next 3 years at about $40. each.  Your Dentist could
give you a more accurate estimate local to you.
  *An alternate my Dentist suggested for Kids (since their jaws and bones
grow so quickly) that you could use that's cheaper is here ->
  He said to go to a Sports Store and buy the kind of Mouthguard they sell
for Hockey or Rugby players.   It's a soft plastic insert that covers both
the top and bottom teeth.  Cut it in Half (horizontally)  since you only
need cover the Top Teeth to prevent damage to teeth and tongue.   Now you
have 2 mouthguards, that will last 4-30 months depending how many nocturnal
seizures you are having.    (I needed a new one about each 6 months in
1993-5, but last one I had made was about 2001 or 2 -- that's why I don't
know the current cost more accurately and they'd vary somewhat depending on
what the local Dental Costs might be.)
   It might take you 2 or 3 nights to get used to the 'insert' but after
that it's Excellent for protecting tongue and teeth from damage caused by
grinding actions and nocturnal seizures.      G./
  (Are the muscle aches described below happening during the night too? or
at other times?   If they are hurting mostly when you first awake or during
the night, you're likely clenching or tensing muscle groups while you sleep.
*That should also be told to the Dr. who prescribes your pills, since the
Night Dose needs adjusting or possibly a 2nd pill added with it, to keep the
Nocturnal Seizures from happening?  ) //

As of the last
> several weeks I have noticed my left side (effected from the stroke in 98)
> has become extremely sore and my muscles really ache. I have tried to
[quoted text clipped - 6 lines]
>>i  am on lamical too..what r the side effects if any...this goes for
>> keppra
CyberCafe - 04 Mar 2005 02:44 GMT
> Hi, i am wondering if anyone can tell me about my seizures. My doc has been
> getting me and my partner to log down when a seizure happens. It has come to
[quoted text clipped - 6 lines]
>
> Melx

I was just sitting here figuring out how many seizures I had at my worse
time in a 24-hour period and it comes out to about 11 of them (I
calculated in five during sleep although that number might have been
higher when they did the portable EEG test.  Just can't recall right now).

That's an interesting observation on the "the less I have, the longer
the seizure is."

Personally, I think the number of seizures you are having is wayyyy more
than I would care to have.

Tegretol worked great for my complex partial seizures but had an
allergic reaction and was switched to Dilantin.  Dilantin gives total
control for me unless I get sick.  Also had an episode of what my
neurologist thinks was a drug interaction with another medication late
last fall (seizures reappeared).  Blood level was too low, so they upped
the dose to 800 mg (long story about the dose as my insurance company
was uncooperative, so now I pay for the additional dose out of my own
pocket).

Initially, after I was first diagnosed, it took about a year to
establish the effective dose.

Barb
Dave ???? - 05 Mar 2005 17:15 GMT
Howdy Melx!

Everybody is different!

Seizure frequency is all a matter of personal perspective:

Folks who have had their seizures under control might consider 1 or 2 a
month to be a lot.

Others may have more than 100 every day!

www.keppra.com has a downloadable seizure log on their "Patients and
Caregivers" page.

I don't put a whole lot of faith in other people's success or failure with
any particular medication. Just because something works for one person
doesn't mean that it will work for the next.

Signature

Dave ????

http://www.howdydave.com

> Hi, i am wondering if anyone can tell me about my seizures. My doc has been
> getting me and my partner to log down when a seizure happens. It has come to
[quoted text clipped - 6 lines]
>
> Melx
twiggyfr3ak - 06 Mar 2005 02:38 GMT
Thx every1 for their posts. i have looked at the sites.. great help!
Melx

-------------
> Howdy Melx!
>
[quoted text clipped - 32 lines]
> >
> > Melx
Chris aka Rewired - 07 Mar 2005 19:34 GMT
If only doctors can understand that. I went for 1000+ to 1-2 /yr and
his thing is. Let's try this other medication or maybe add a couple of
more. We can get you down to none.
I told him that I am fununctioning higher than I ever have and will not
go back to the zommbie state again. I reminded him that when he wants
to start paying me and buying my meds along with keeping me employed, I
will do all those meds.
I got rid of my last doc becasue he wouldn't listen.

I have been on Tegratol for 30 yrs now, where many can't take it 30
days. I can't take Neurontin but my wife takes clsoe to 4000 mg for
back pain. 900 threw me for a loop.

Chris

Snipped from Dave "Seizure frequency is all a matter of personal
perspective:"
 
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