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Medical Forum / Diseases and Disorders / Epilepsy / November 2005

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Bob Thompson - 03 Nov 2005 16:08 GMT
Greetings/La math duibh
Ciamar a tha sibh

I am writing this post on behalf of my daughter Emma.  (I always help her
when she uses the net; for obvious reasons).
She has been diagnosed with epilepsy for about two and a half years.  She is
now 14 yrs old and has started puberty
with all of its challenges; especially for a young female.

During her cycle; around 14 days after her period she is having fits
regularly and this is causing concern.  She is on 300mg
of Tegretol morning and night. She has Complex Partial Seizures with
complications.

Does any female member of the newsgroup have any similar experiences or has
any advice.  The medical profession here are
just umming and erring without a real clue making patronizing comments like
"well it is possible her hormone imbalances are
causing the fits so there might be a relationship".  After a fit she is
extremely light sensitive.

Their solution is just to up the dose of her medication - now let me tell
you about her medication.  Before she went onto her medication
she was bight; lively; full of life now she is dopey cannot get her to get
up in the morning - you look at her - into her eyes and can see
she is not fully conscious.  She gets frustrated by this herself and she
gets angry - very angry.  My wife and I worry!

Any advice from your experiences would be appreciated.

Gu'n ro' math agaibh
Mar sin leibh

Signed
Bob Thompson & Emmz
Julie - 03 Nov 2005 21:54 GMT
Hello Bob and Emma, and welcome to the group.  I was probably about the same age
as
Emma when I started having seizures.  But this was back in the 1960s and I lived
in a small
town in Alaska.  The doctors didn't do any tests, so I didn't realize I had
epilepsy.  I
thought I was just fainting.  This happened several times during my menstrual
cycle.  There
is evidence that hormone changes can effect seizure disorders.
http://www.epilepsyfoundation.org/answerplace/Life/adults/women/weihormones.cfm

Take care,
Julie Walton, Volunteer Webmaster
Epilepsy Foundation of Idaho
http://www.epilepsyidaho.org

> Greetings/La math duibh
> Ciamar a tha sibh
[quoted text clipped - 31 lines]
> Signed
> Bob Thompson & Emmz
Sofia - 06 Nov 2005 22:52 GMT
> This happened several times during my menstrual cycle.  There is
> evidence that hormone changes can effect seizure disorders.

Hi Bob. I wanted to tell you how although I started having absences
(petit mal seizures) at 9 years of age, and full blown tonic-clonic
seizures at 11 years of age, when I began my menstrual cycle, my seizures
always multiplied to a much higher level.

Like Julie, the reason I was given for why this happened was the effect of
hormone changes in the body. This rapid multiplication of seizures still
happens once every month today, just before, and during my menstrual cycle
because of these hormone changes, but nowadays, I simply mark them out on
my calendar so that both my husband and myself know that we should expect
and prepare for them.

All the best

Sofie

Signature

Please visit my deviantART page: http://sofen.deviantart.com/

Bob Thompson - 12 Nov 2005 15:13 GMT
Hi folks
(From Emma & Bob)

This is to thank those who made a reply with an example of their situations
from all of these private and public posts we have the message to keep a
diary of all relevant events and also we have received and insight into
what to expect

Emma has a question -
Her main doctor (her consultant - who is simply a paediatrician) was going
to put her on one type of AED - which she cannot remember the name of,
but then said to himself that it was really for someone at least sixteen
years old
and so he said that he would put her on tegretol.  But then another doctor
at
the hospital; after she had been admitted due to increase in frequency of
fits;
asked why the consultant had put Emma on tegretol at all.  Confusing and
worrying - Emma is under the impression it has something to do with her
being
under age for having children, etc.  But now she is worried about what
effects;
long lasting or otherwise; these things will have on her ability to conceive
when
she is older and married.

Special Thanks to Ann, Julie and Sofia

God Bless all

Emma (& Bob)

BTW - Emma's direct email address is simply Emma@zarahemla.demon.co.uk
P.S. it is still monitored by me so be warned - Bob

> Greetings/La math duibh
> Ciamar a tha sibh
[quoted text clipped - 34 lines]
> Signed
> Bob Thompson & Emmz
G.Ross - 12 Nov 2005 16:30 GMT
 If Emma is under a certain age (18?) her bones, teeth etc are still
growing and some people experience Tegretol robbing calcium in a (small?)
part of the population.  Most times they don't give it to 'kids'  until
they're olde, like me... probably over 20 unless there's good reason.
   Tegretol and some Other Anti Ep Drugs (AEDs), are absorbed into the
blood.  If she were later to become pregnant, the unborn child also would
have Tegretol in their blood.  One thing to avoid With Tegretol is Prompt
Withdrawal of the Drug except under a Doctor's supervison.  When a Fetus is
born, it doesn't have that option and could undergo other? problems with the
prompt removal of the Carbamazepine (Tegretol).   I think I had read also
that some of the AEDs can produce birth defects in a part of the population,
but don't have a link wrt. that, unless there's an advisory under the
Tegretol site about 'discuss with your doctor if you plan to become
pregnant'  sort of thing.
   Unless you get a website from your Chemist (or you could speak to them
about this too, as they might have other websites or printouts they can give
you),  you could search under the U.S. Ep. Foundation website, under
Medications and type Tegretol and search? or go?  at the search entry. Some
sites might list it under the Medical 'geek name'  Carbamazepine.  If
Tegretol doesn't turn up any hits (it should) on searches, you could try the
latter as see if the Med. name pulls info. in.
  Almost ALL of the prescriptions written now are Time Released versions,
either Tegretol CR, XR or Retard.   Those are designed to keep a stable
level in bloodstream, more reliably than the original Tegretol.   Many of us
just call it Tegretol since we know that it's part of that family.

   If you missed an older post, alcohol (including in some cough medicines)
and Grapefruit should not be used with Tegretol.    The EFA site is at
http://efa.org  .     Gordon.
(I don't think I replied already, as you appeared to want a gender-specific
reply at bottom here.)

> Hi folks
> (From Emma & Bob)
[quoted text clipped - 65 lines]
>> Signed
>> Bob Thompson & Emmz
Julie - 14 Nov 2005 19:31 GMT
Hi Emma and Bob, here is information from the Epilepsy Foundation here in the
USA about Tegretol.
http://efa.org/answerplace/Medical/treatment/medications/typesmedicine/tegretol.cfm

Hope this is beneficial.
Take care,
Julie

> Hi folks
> (From Emma & Bob)
[quoted text clipped - 69 lines]
> > Signed
> > Bob Thompson & Emmz

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