Home | Contact Us | FAQ | Search & Site Map | Link to Us
Sign In | Join | Other 45 Sites in Network
Home
Discussion Groups
General
GeneralCardiologyVisionDentistryPharmacyLaboratoryNutritionAlternative
Diseases and Disorders
AIDSAlzheimer'sArthritisAsthmaCancerBreast CancerDiabetesEpilepsyGlaucomaHepatitisHerpesLupusProstate BPHProstate CancerProstatitisSinusitisTinnitus

Medical Forum / Diseases and Disorders / Epilepsy / December 2005

Tip: Looking for answers? Try searching our database.

Seizure free - at any cost?

Thread view: 
Enable EMail Alerts  Start New Thread
Thread rating: 
ComradeCharlie - 30 Nov 2005 12:59 GMT
Yesterday I received a letter from my neurologist, telling me that after
the meeting we had a month ago, she wants me to go on Keppra on top of
the Trileptal I'm taking now. In that meeting I told her how tired I
feel all the time, how difficult it is for me to focus on anything for
very long and is there something we can do about that?

Now I have the answer. And it disappoints me. I hadn't expected it to be
that I have to go on /more/ medicine. I was hoping that we could lower
the dosage I'm taking now (1800mg/daily of Trileptal) instead of adding
yet another drug (eventually 1000mg/daily of Keppra).

This has brought me to think that the doctors' primary aim is to get
patients seizure free, no matter what. I feel as though I'm in a daze
most of the time, that the brain fog doesn't go away. I used to be quite
artistic; drawing, painting, writing. These days I can barely summon
enough energy to pick up my camera and go outside to take some shots.

As it stands, I have 4-5 nocturnal seizures a year. For me, that's not a
lot. I can live with it. I can't live in that constant brain fog. Has
any of you had similar feelings? That your doctors want you to be 100%
seizure free rather no matter the cost? And what have you done about it?

- Charlie

Signature

http://www.charlotte-rasmussen.net/

G.Ross - 30 Nov 2005 16:27 GMT
> Yesterday I received a letter from my neurologist, telling me that after
> the meeting we had a month ago, she wants me to go on Keppra on top of the
[quoted text clipped - 18 lines]
> free rather no matter the cost? And what have you done about it?
> - Charlie

Hi.  In my case I wanted to be seizure free to stop waking up in Emerg.
after walking into traffic, and losing total awareness of where I was or
what I did during a Complex Partial type.
   I'd expect (and others here likely have experience with your 2 pills, as
mine are different),  that the Doctor would slowly add the New Pill but
**reduce the First one as this was happening.  The second might be less
prone to producing the Brain Fog as the First, but you might still need some
of the first to control the type of szrs. you are having.
 (Is that NOT the impression you got from the letter she sent?   I would
expect if she wanted to Add the new pill on top of what you are taking, that
she'd list why that would help with your Primary Concern, as a patient, to
get rid of the Brain Fog, rather than just get 100% seizure control.)

   Do you know the 'type'  of seizure you are having (other than just
Nocturnal, as those happen with several of the types).   Were they Grand
Mal, Complex Partial (mine) or another name?   Even whatever they call that
in Denmark, might help others here reply with experiences or suggestions.
What might work for e.g. a Simple Partial seizure, might be totally useless
for a particular type of Complex Partial or Grand Mal.

   How long have you been using the First med. you listed at Para. 1 above?
If it's been a long time and you're still having seizures (i.e. the
nocturnal ones),  perhaps the Dr. is trying to reduce both the Nocturnal
szrs. *and the Brain Fog that the first Med. might make worse, by reducing
it and adding the Keppra.  I had a new pill added in 1996, but with
*reduction (slowly) of the first Primary pill (Tegretol)  for my type.   I
had been told to 'hope for'  2-3 szrs. a month -- not nocturnal ones, though
I had those too, in 1993.   Last 2 I had were Dec. 97, June 98.
  Not everyone gets full control, but with many of the newer pills, they're
often targeted more to particular areas of the brain and particular seizure
types, and it might look like they're tinkering with our brain, when they
might be trying to find the one that works for our type.
   Did you tell her you are only having the Nocturnal types, and that you
are concerned that the added Med. and doses, you felt, were contributing to
loss of quality of life in order to 'just control' the few seizures you were
having?   (Some Doctors don't necessarily know that, unless we tell them
what we'd like to see as part of *our quality of life.   She might be
assuming there's a risk of the nocturnal seizures getting worse or causing
other internal damage, based on her training, if they're not controlled, and
not realize you are still experiencing side effects you don't like?  )
 With respect to the 4-5 Nocturnal seizures only,  if they are as strong as
mine were .... you'd need a discount on Rubber Sheets :-< .   I was at point
where I'd have liked to have more during the day when someone was around,
than have my particular type Generalize into something stronger, as no one
was around to tell me if it was only a single seizure or if I was having
multiple ones that could have been more serious than I realized. (*My type,
I was not aware after I entered 'the Twilight Zone'  what happened next, so
I was only able to tell the Neuro I had multiple seizures from those who saw
my seizures happen. )

  Still,  if you feel the symptoms are being too disruptive, you can ask
the Dr. about either using Another (!!) second medication, or replacing the
First one -- depending which might be contributing to the Brain Fog etc.
symptoms.   Those symptoms could *also be result of whatever condition is
triggering yours?   I couldn't tell that (yet) from what was above.  Did you
experience that Fog you described only with this new pill or was it part of
what you had when the original seizures started?

   Let's see what others have to say too.  (This is an International Group,
so you might get replies over next 2-3 days as the various timezones see
your message.   There's likely someone around here who's had experiences or
frustrations similar to your's who might have some other comments.)  I'd
especially like to see other's experiences with those particular pills, as
we have a lot of readers who are using those, and there might be ways to use
them but without the Fog.  Sometimes just altering the timing of the doses,
but keeping the same levels, can help.  /G.
Dave ©¿©¬ - 01 Dec 2005 16:44 GMT
Howdy Charlie!

A doctor might want all of his patients to be seizure free just because it
looks good on his record.

Doctors often don't take quality of life  issues into consideration.

IMO: There is no point to being seizure free if you are going to have to be
a zombie for the rest of your life!

Everybody has to decide for themselves where the break-even point is between
being seizure free and being able to function and interact with the rest of
the world.

Signature

Dave ©¿©
"Ego sum quis Ego sum quod ut est quicumque Ego sum"

http://www.howdydave.com

> Yesterday I received a letter from my neurologist, telling me that after
> the meeting we had a month ago, she wants me to go on Keppra on top of
[quoted text clipped - 19 lines]
>
> - Charlie
Patsy and Darryl - 04 Dec 2005 08:05 GMT
Hi Charlie,
In my opinion the docs would rather we kept having seizures, so they
can keep plying us with more meds from which they make good money. I
don't believe they give a flying frog whether our quality of life is
crap.
They currently have me taking four different anti-ep medications = 115
pills per week. You better believe they make good money from that.
After my surgery, I was virtually seizure free, but they decided in
their wisdom to put me on one more med and things turned to custard,
so now I'm back to where I was prior to surgery and still have my head
in a mess cos of all the drugs I'm on.
Despite all the meds they have me swallowing down, I spent last night
having uncontrollable seizures, one after another for hours in front
of my kids. But never mind that the pills aren't working, at least the
doc gets his profit from prescribing them for me. Never mind the fact
that I can never think straight, can't finish a sentence when talking
to my kids, can't drive them anywhere, am unemployable and have to
live out in the country so I don't upset neighbours with my screaming
every day when I have seizures. At least the doctor has a nice house
and nice car because he gets to make money from prescribing mind
numbing drugs.
Darryl.

> Yesterday I received a letter from my neurologist, telling me that
> after the meeting we had a month ago, she wants me to go on Keppra
[quoted text clipped - 23 lines]
>
> - Charlie
bugs@bugs.com - 05 Dec 2005 03:10 GMT
Wow what a varying opinion on this subject, and it is all great. I am not on
all that much med's but still more than I would like to be however I would
agree to take more if they could stop the medicines. I don't care if the
doctors make more money but I can see Patsy's point of view very well. I
would be very pissed if I were in her shoes having the surgery and then the
doctors putting her on more med's that caused her to have more seizures.
This makes me wonder is there really a cut and dried answer to this question
you posed here. I don't think so, I believe it is up to each and everyone of
us as individuals to work with our doctors.

Let me also say this I don't know how it is out of the states but I know in
the US the doctors will try to play God with our lives and it is up to each
one of us to stop them and believe it or not we have the power to do it. I
don't put up with the BS that the Doctors try to throw at me and they know
it. I will give a Doctor one chance and one chance only, I also let them
know that up front. I tell them in these exact words pardon me but this is
the phrase I use "I hate f.cking doctors" now if you want to work with me we
can try. It shocks them to no end but it lets them know where I stand and
they usually don't try a bunch of BS on me. If they want to do something
they will ask my permission. Another thing I don't do is sit in a waiting
room for hours waiting to see a doctor. I have an appointment and I give
then 1/2 an hour after the appointment time if I am not in the room I get up
and leave, they find that out and guess what I never wait at any of my
doctors, "ANYMORE!" I have walked out at least twice on all of them and they
tried to charge me for the visit, I refused to pay and told them I would
send them a bill for my time having to wait, they now give me appointments
when they know I wont have to wait.

Don't let your doctor do something to you unless you are comfortable with
it. I had a doctor change my med's once and I was seizure free at the time
but she didn't like my med's so she changed them against my will and I have
not been able to get them under control since. I have had numerous seizures
and don't like it. I can no longer drive because I have had 5 wrecks and
totaled 3 vehicles. I sleep in the middle of the bed for fear of falling out
of the bed during a nocturnal seizure. Many things in my life have changed
because I gave into this Doctor but my friend I will never give into another
one. They do it my way or I find one that will. Now I am not saying I know
better because I don't they ask and we discuss it first, that is my way, if
I don't like it we look for other options. Just because they suggest
something doesn't mean it is gospel. Just because I suggest something
doesn't mean it is gospel either, we work together. But since I am paying
the doctor I am the Boss.

If you don't like what your doctor is doing find another one.

Signature

I wish you all the best
Tim Wise

www.onepest.com
www.askourpros.com

needhamleonards - 05 Dec 2005 23:30 GMT
I came to the same conclusion, and accept it. For a while I had hopes that
my neurologist could do something more, like find the cause of my seizures,
but finding the cause of an individual's seizure is highly problematic.
Apparently the understanding is that, if there isn't a cure, at least we can
try for prevention. I'm happy my seizures are controlled, there are side
effects, in my case mild, but they're preferable to the alternative.
Jack

> Yesterday I received a letter from my neurologist, telling me that after
> the meeting we had a month ago, she wants me to go on Keppra on top of
[quoted text clipped - 19 lines]
>
> - Charlie
 
Sign In
Join
My Latest Posts
My Monitored Threads
My Blog
My Photo Gallery
My Profile
My Homepage

Start New Thread
Enable EMail Alerts
Rate this Thread



©2008 Advenet LLC   Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.