--- In adultswithepilepsy@yahoogroups.com, Monica
<heismineandiamhis@y...> wrote:
> Dear Annie,
> It is my understanding that people are most likely to
> get seizures as they start to fall asleep and when
> they start to wake up because the brainwaves change at
> those times.
>
> I do seem to get more seizures (complex partials)
> while asleep than awake.
>
> Also, I have relatively good seizure control for 6
> months at a time, then for 2 weeks I have many
> seizures, complex partials and tonic clonics.
>
> My mother also observes my having many absence
> seizures during the day.  Of course, absence seizures
> can not be observed while one is sleeping.
>
> I hope this helps a little.
>
> Yours truly,
>
> Monica
>
>
> --- a_hermans <a_hermans@y...> wrote:
>
> >
> > Well nobody's around so I thought I'd write a bit
> > about my situation
> > and hopefully someone can relate. I'm 23,married
> > with 2 kids and was
> > diagnosed with epilepsy when I was 20. I have
> > noctural seizures so if
> > I   start to fall asleep or within an hour of
> > falling asleep I go into
> > covulsions. It's made for some pretty stressful
> > nights. I thank God
> > that I don't have them in the day because I remember
> > when they first
> > told me I had this; I couldn't help but contantly
> > worry that I'd be
> > walking along and just hit the ground. I have
> > tonic/clonic seizures
> > that last about 3 minutes on average but some how
> > drains me for days.
> > I spent about 2 years trying desperately to find a
> > way to stop them.
> > Their were nights where I'd have  3 or 4 the most
> > being 5 I'd have
> > anywhere from 2-7 nights a week with seizures. I
> > thought I'd die or go
> > crazy. After 4 or 5 different drugs we started
> > looking into brain
> > surgery; within the month of going in for
> > prelimenary stuff. Our last
> > attempt was to combine some pills and though I had
> > absolutely no faith
> > in them, they reduced the frequency and intensity
> > dramatically. I'm
> > still working on getting rid of the smaller ones
> > that I still have.
> > Anyone else know anything about noctural epilepsy?
> >
> >
> >
> >
> >
>
>
> =====
>
>                                      Antonio and Monica
>
> Had you been having a lot of seizures before you came to this amount
  of control? How long have you been an epileptic? I had read quite a
bit about different types of seizures, but when I found out that I
have tonic clonics I focused mainly on that. I think I may be having a
different type of seizure now. Can you tell me what yours feel like?

>
>
>
>
> __________________________________
> Do you Yahoo!?
> Yahoo! Mail - Helps protect you from nasty viruses.
> http://promotions.yahoo.com/new_mailqq

Dear Annie,
It is my understanding that people are most likely to
get seizures as they start to fall asleep and when
they start to wake up because the brainwaves change at
those times.

I do seem to get more seizures (complex partials)
while asleep than awake.

Also, I have relatively good seizure control for 6
months at a time, then for 2 weeks I have many
seizures, complex partials and tonic clonics.

My mother also observes my having many absence
seizures during the day.  Of course, absence seizures
can not be observed while one is sleeping.

I hope this helps a little.

Yours truly,

Monica


--- a_hermans <a_hermans@...> wrote:

>
> Well nobody's around so I thought I'd write a bit
> about my situation
> and hopefully someone can relate. I'm 23,married
> with 2 kids and was
> diagnosed with epilepsy when I was 20. I have
> noctural seizures so if
> I   start to fall asleep or within an hour of
> falling asleep I go into
> covulsions. It's made for some pretty stressful
> nights. I thank God
> that I don't have them in the day because I remember
> when they first
> told me I had this; I couldn't help but contantly
> worry that I'd be
> walking along and just hit the ground. I have
> tonic/clonic seizures
> that last about 3 minutes on average but some how
> drains me for days.
> I spent about 2 years trying desperately to find a
> way to stop them.
> Their were nights where I'd have  3 or 4 the most
> being 5 I'd have
> anywhere from 2-7 nights a week with seizures. I
> thought I'd die or go
> crazy. After 4 or 5 different drugs we started
> looking into brain
> surgery; within the month of going in for
> prelimenary stuff. Our last
> attempt was to combine some pills and though I had
> absolutely no faith
> in them, they reduced the frequency and intensity
> dramatically. I'm
> still working on getting rid of the smaller ones
> that I still have.
> Anyone else know anything about noctural epilepsy?
>
>
>
>
>


=====

                                      Antonio and Monica






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Is there a specific time when someone has time to talk?

--- Melissa <melis2642@...> wrote:

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

I am wondering if any of you with complex partial
seizures would be
kind to explain to me what does it feel like and what
happens during
them.

I have had them for majority of my life but I can not
ever find the
right words to explain to the doctors or anyone about
what the
feeling is like.  I know everyones is different but
maybe there is
someone out there that has the same thing going on
with them. It gets
very frustrating trying to find the words to explain
them all the
time and the explanations from others may help me find
the words i'm
looking for.  Thanks for any help.




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Dear Melissa:

I don't know how helpful this will be to you; but for
what it's worth here's my description of the Complex
Partial Seizures I used to have:

The Seizures would start with extreme Vertigo.
(Vertigo is a form of dizziness that makes it seem as
though the world revolves around you - literally.  It
seems like you're sitting in the centre of a room; and
the room is spinning around you like a
merry-go-round.)
Seeing everything spinning around me at a high rate of
speed would then make me feel nauseous (like I wanted
to throw up).  So I would seek out a place where I
could sit down, close my eyes, and wait for it to be
over.  I found that closing my eyes helped me to avoid
some of the nausea; because when my eyes were closed I
couldn't see the room spinning around me.  The Vertigo
would last for approximately 20-30 minutes.  After the
Vertigo subsided I would experiance a form of
temporary amnesia for a period of about 30 minutes.
During that 30 minutes my short term memory would be a
complete blank; and I would not be able to remember
anything that happened within the 48 hours
immiediately preceeding the seizure.  Then my short
term memory would gradually return, and I would then
be able to go back to business as usual.  Before I was
actually diagnosed with epilepsy I used to refer to
these episodes as my dizzy spells.  At first I thought
that I might have a middle ear infection, because I
knew that vertigo was a symptom that was commonly
associated with middle ear infections.  So when I went
to see my family doctor about this problem I was
expecting him to prescribe some antibiotics for a
middle ear infection.
But much to my surprise, he found nothing wrong with
my middle ear.  Then after giving me a complete
physical he had to admit that he could find nothing
else physically wrong with me, and that he was
completely stumped.  He then decided to refer me to a
neurologist in the hope that a thurough neurological
exam might turn up something.

I suggest that you try something I did.  Get yourself
a notebook.  Then, immiediately after each seizure,
write down everything you can remember about the
experiance in detail.  After you've written accounts
of about 12-14 seizures in the notebook go back and
re-read them.  You should notice a common pattern of
events that occurs in every seizure. Then you can just
write down a description of that pattern on a separate
sheet of paper to give to you doctor.  Or you can just
give the doctor the whole notebook like I did when I
went for my appointment with the neurologist.




=====
Sincerely yours,
Ann Martindale
Telephone:  (416) 492-7172
Fax:  (416) 492-0271
E-mail 1:  annmartindale@...
E-mail 2:  ammartindale@...

______________________________________________________________________
Post your free ad now! http://personals.yahoo.ca

I am wondering if any of you with complex partial seizures would be
kind to explain to me what does it feel like and what happens during
them.

I have had them for majority of my life but I can not ever find the
right words to explain to the doctors or anyone about what the
feeling is like.  I know everyones is different but maybe there is
someone out there that has the same thing going on with them. It gets
very frustrating trying to find the words to explain them all the
time and the explanations from others may help me find the words i'm
looking for.  Thanks for any help.

hey,

Just wanted to share some info and see if I could help anyone else lower their
mortgage payments, I saved nearly $200 off my monthly payment!

Takes two minutes take a look.

http://agocras.net/azwh1








I posted this on adultswithepilepsy, if you dont want to be a member anymore
just email adultswithepilepsy-unsubscribe@yahoogroups.com

--- a_hermans <a_hermans@...> wrote:

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

Well nobody's around so I thought I'd write a bit
about my situation
and hopefully someone can relate. I'm 23,married with
2 kids and was
diagnosed with epilepsy when I was 20. I have noctural
seizures so if
I   start to fall asleep or within an hour of falling
asleep I go into
covulsions. It's made for some pretty stressful
nights. I thank God
that I don't have them in the day because I remember
when they first
told me I had this; I couldn't help but contantly
worry that I'd be
walking along and just hit the ground. I have
tonic/clonic seizures
that last about 3 minutes on average but some how
drains me for days.
I spent about 2 years trying desperately to find a way
to stop them.
Their were nights where I'd have  3 or 4 the most
being 5 I'd have
anywhere from 2-7 nights a week with seizures. I
thought I'd die or go
crazy. After 4 or 5 different drugs we started looking
into brain
surgery; within the month of going in for prelimenary
stuff. Our last
attempt was to combine some pills and though I had
absolutely no faith
in them, they reduced the frequency and intensity
dramatically. I'm
still working on getting rid of the smaller ones that
I still have.
Anyone else know anything about noctural epilepsy?




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Hi:

I've had nocturnal seizures since I switched from
having the comlpex partial variety to the Tonic Clonic
variety.  When I was having Complex partial seizures,
my seizures occured during the day. But since I
started having Tonic Clonic seizures all but one of my
seizures have occured at night.  I've also experianced
nocturnal  Status Epilepticus on a few occaisions.
When I have a bout of Status Epilepticus I generally
have clusters of four or five Tonic Clonic seizures at
a time.  Fortunately I have managed to get good
seizure control with medication; and I have been
seizure free for over 11 years now.




=====
Sincerely yours,
Ann Martindale
Telephone:  (416) 492-7172
Fax:  (416) 492-0271
E-mail 1:  annmartindale@...
E-mail 2:  ammartindale@...

______________________________________________________________________
Post your free ad now! http://personals.yahoo.ca

Well nobody's around so I thought I'd write a bit about my situation
and hopefully someone can relate. I'm 23,married with 2 kids and was
diagnosed with epilepsy when I was 20. I have noctural seizures so if
I   start to fall asleep or within an hour of falling asleep I go into
covulsions. It's made for some pretty stressful nights. I thank God
that I don't have them in the day because I remember when they first
told me I had this; I couldn't help but contantly worry that I'd be
walking along and just hit the ground. I have tonic/clonic seizures
that last about 3 minutes on average but some how drains me for days.
I spent about 2 years trying desperately to find a way to stop them.
Their were nights where I'd have  3 or 4 the most being 5 I'd have
anywhere from 2-7 nights a week with seizures. I thought I'd die or go
crazy. After 4 or 5 different drugs we started looking into brain
surgery; within the month of going in for prelimenary stuff. Our last
attempt was to combine some pills and though I had absolutely no faith
in them, they reduced the frequency and intensity dramatically. I'm
still working on getting rid of the smaller ones that I still have.
Anyone else know anything about noctural epilepsy?

I've never done this computer group/chat thing, but I've been having
frequent seizures for about 3 years now and it'd sure be nice to talk
to people who actually know what it feels like to be epileptic and the
problems it causes.

Dear Friends,

As my husband and I approach our first Christmas as a married couple,
we desire to find non-materialistic expression of the season.

Any ideas?

Thank you very much.

Yours truly,

Monica

Dear Friends,
My husband and I both have epilepsy.  This is the first time I am
with someone with epilepsy, although I have been with others of other
disabilities in the past.

I notice that when I am agitated, my husband is able to calm me down
and when my husband is agitated, I am able to calm him down.

The problem is when we are BOTH agitated at the same time, we tend to
have a sudden blow out style argument over next to nothing.

My husband is on mysoline and depakote with very good seizure control
and I am on Keppra and Carbatrol with partial seizure control.

Has anyone been on mood stabilizers and how effective were they?

Thank you very much.

Yours truly,

Monica

What up this massage  is for the guys I was doning some research on
dilantin and it causes erectil disfuntion my doctor never told me
this im going to rip him a new ass in jan when i see him

Hi,

Would you like the community to have a better understanding of how it
feels to be a young person living with Epilepsy?

If you are between the ages of 10 and 24 (or know somebody who is),
you can have your say in a University Doctoral Research study by
going to http://www.ozinfo.com.au/acepl.htm and completing the survey
online.

Thanks for any help you can give!

Allison Clarke

Hi,
I have bad credit
I was able to refinance at a really low rate
It only takes a few minutes to fill out the free form


http://pro-mortgage.biz/ajrhu
Please copy and paste the above link into your web browser.

This email was sent because you joined our group.
If you do not wish to recieve any emails, unsubscribe.
by sending a mail here adultswithepilepsy-unsubscribe@yahoogroups.com

Hi,
I have bad credit
I was able to refinance at a really low rate
The free form only takes a few minutes


http://pro-mortgage.biz/azwhu
Please copy and paste the above link into your web browser.

This email was sent because you joined our group.
If you do not wish to recieve any emails, unsubscribe.
by sending a mail here adultswithepilepsy-unsubscribe@yahoogroups.com

helo

life is always having ups and down let us get used to it

wish u all the best

madhu madhu





---------------------------------
Find local movie times and trailers on Yahoo! Movies.


[Non-text portions of this message have been removed]

Hi you guys, I, myself have been through the challenge of meds. But for about 4
months ago I went through surgery and everything is great. I'm still on my meds,
but when I was still mixing my meds and never found out what the best one was
for my body... One of the trial ones I had taken was Lamictal. I had taken it
for a couple of weeks. All of a sudden, I had become so tired, but I thought
that was because I was relaxing. I had taken a trip to Canada from the US.
Halfway throughout my trip, I realized there was a rash on my skin, especially
my arms. I thought it was nothing at first, so I ignored it. In the middle of
one night, I woke up with a temperature of 107 degrees. I thought it was a game,
I just thought the thermometer wasn't working... meanwhile I had 3 of them in my
mouth. I never took myself to the hospital, but I called the 24 hour nurse
hotline in Canada and they knew that the problem was from my meds. I just took
myself to a walk in clinic the next day, changed my
  meds, and everything was much better. Whatever happens, make sure you turn to
your doctor and have him/her change the dosage automatically so that more harm
won't come in the way. If you ever wanna chit chat, feel free...
kaosluva2@...  or my IM s/n is kaosluva2. ttyl.

~Lucy~

Anna <theatrerulz@...> wrote:

Hey Stuart,

I too am a newbie, just joined couple days ago. I was diagnosed w/
Epilepsy when I was 3 after having a Gran Mal seizure. Now I'm 27.
Currently I'm taking Topamax which I just switch to about a yr ago
after being on Depakote for about 15 yrs. Before that there were many
drugs. Dylantin, Tegratol, etc...

However, I have taken Lamictal at one time. (I assume that's what you
meant.) While I don't know exactly what it can cause I'll tell you
what I remember. I was on it for a couple of weeks and I can't take
it anymore b/c we found out I'm allergic to it. This was about 6-7
yrs. ago. I'd come home for spring break from college. Over the
course of the weekend I had chills, fever(at the same time),
vomiting, muscle weekness, I was VERY lethargic, and I developed
hives. I wasn't very communicative either, meaning I couldn't
remember the names for things and all I wanted to do was sleep. I
wouldn't eat couldn't keep anything down. My mother, who was a nurse
at the time in a hospital, went to work on the third night when the
hives showed up and looked in her drug books she had access to. She
said she saw the works "...can cause fatal reaction." And she called
home and told me to have my father get me to the ER. So I'm not
trying to scare ya or anyone else but if you start to experience any
of these symptoms, 1. get to an ER, 2. STOP taking that med which
they *will* tell you to do in the ER, 3. call your DR. Doesn't have
to be in that order. But that was the order I did it considering it
was a Sunday.

Hope this helps, sorry I can't tell ya more about the common side
effects of it.

Anna

--- In adultswithepilepsy@yahoogroups.com, "Stuart"
<tattyhead65@y...> wrote:
>
> Sorry, It's Lamical I take - not Dylantin.




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[Non-text portions of this message have been removed]

Many thanks for your support.  I've re-posted my original message
with the necessary correction - sorry, again, for the goof.  I'm glad
I found this group and hope I can be of some help and support as well.

"Hi everyone, I've just joined your group. To tell you a little about
myself, I'm 39 years old now and developed temperal lobe epilepsy at
the age of about 8 years old. I was born with spinabifida and
hydracephalus - then had meningitis at the age of four. I have two -
four seizures a month now. Can I ask if anyone knows much about the
side effects of Lamical please? I've just been through a very rough
patch of amnesia and I'm not convinced the medication was entirely to
blame. If anyone could chat with me regarding this, I'd be very
grateful. Many thanks."

Does anyone know if theres any side effect to dilantin when it comes
to sex

Hey Stuart,

I too am a newbie, just joined couple days ago. I was diagnosed w/
Epilepsy when I was 3 after having a Gran Mal seizure. Now I'm 27.
Currently I'm taking Topamax which I just switch to about a yr ago
after being on Depakote for about 15 yrs. Before that there were many
drugs. Dylantin, Tegratol, etc...

However, I have taken Lamictal at one time. (I assume that's what you
meant.) While I don't know exactly what it can cause I'll tell you
what I remember. I was on it for a couple of weeks and I can't take
it anymore b/c we found out I'm allergic to it. This was about 6-7
yrs. ago. I'd come home for spring break from college. Over the
course of the weekend I had chills, fever(at the same time),
vomiting, muscle weekness, I was VERY lethargic, and I developed
hives. I wasn't very communicative either, meaning I couldn't
remember the names for things and all I wanted to do was sleep. I
wouldn't eat couldn't keep anything down. My mother, who was a nurse
at the time in a hospital, went to work on the third night when the
hives showed up and looked in her drug books she had access to. She
said she saw the works "...can cause fatal reaction." And she called
home and told me to have my father get me to the ER. So I'm not
trying to scare ya or anyone else but if you start to experience any
of these symptoms, 1. get to an ER, 2. STOP taking that med which
they *will* tell you to do in the ER, 3. call your DR. Doesn't have
to be in that order. But that was the order I did it considering it
was a Sunday.

Hope this helps, sorry I can't tell ya more about the common side
effects of it.

Anna

--- In adultswithepilepsy@yahoogroups.com, "Stuart"
<tattyhead65@y...> wrote:
>
> Sorry, It's Lamical I take - not Dylantin.

Dear Josy,
   I was told the same thing. I'm sure my neuro didn't intend to do so, but he
scared me with the same advice. I'm 49 now, no significant other & no kids.
Everytime I had a seizure, grand mal, as a teen, MORE MEDS were perscribed.
Eventually, I was on 700 mg Dilantin Kapseals and 600 mg Phenobarb DAILY. As a
high school senior, I behaved like a drunk & the neuro wondered how I ever got
good grades in school & why I hadn't committed suicide?
    I flushed out my system & got down to 100 mg DAILY of BOTH Dilantin & Mebaral
(like Phenobarb). No more toxic reaction & well controlled. SEIZURE FREE FROM
1971 to 2000. Here's what no one will tell you. HORMONES! They are lulu's! When
you're pregnant or coming to menopause, those dumb hormones flux, your liver
metabolises differently & if your blood level goes from a normal 10 to 6 or 4 -
LOOK OUT! SEIZURE CITY!
  Believe me. Unfortuneately, I know. I'm 49, have had some form of epilepsy
(left front temporal lobe) since I was 2 &, in 2000, was put on different formsa
of Thyroid meds (Levothyroxine) Result: My metabolism was raised, liver function
was raised, liver enzymes were raised & my body was getting rid of Dilantin
FASTER than it could be replaced. Taking my meds at different times failed and
so did switching me to different thyroid meds. FAILED!
   When I got myself OFF thyroid meds & my neuro adjusted my Dilantin doseage
using blood tests - ALL WAS WELL. I'm controlled to this day. HOWEVER, I had to
look in a health food store & experiment to find the EXACT doseage of an amino
acid & supplements for my thyroid. NO ONE knew what to do as they NEVER heard &
COULDN'T CONCEIVE that an epileptic could get to be hypothyroid.
     I have to do their work for them. Now, I MAKE sure that ANY doctor & I see
eye to eye or brain to brain! The smart ones know it's best to learn from me. Of
course, take your meds regularly & tell your doc your concerns. If you & your
doc can't see eye to eye, keep searching if you can. woman's hormones will do
her in & that's why they have to raise your meds if pregnant, in puberty or
coming to menopause. You can also try to someone who specializes in the
endocrine system, if that's a possibility.
   Here's a couple of websites www.andrewsreiter.com  and I think
www.pharmacyonlinerx.com  or some combination of those terms. It may be a bit
frustrating, but the last site is one for checking what meds interfere with
yours. There's also the stress of family, pregnancy, finances, lack of sleep
with a newborn. If you get too stressed or tired, it may start  a seizure.
  I have zero to a teeny regret about not having a family of my own. I had enough
stress when my dad died in 1996. I was VERY CLOSE to him. I have enough stress
now with my 77 yr. old mom, who's survived a BIG heart attack, successful
cataracht surgeries, knee replacement, shoulder & knee pain. Emotionally and
perhaps, you do miss something when you don't grow personally or professionally.
You miss something when you don't have some type of caring cheerleader, be it
kids, significant other, faith, whatever.
    I'd talk more, but I'm getting hungry & I'm also getting over a bad cold.
I've blown my nose so many times, I'm afraid it'll fall off. Glad to talk to you
anytime. I'm not always on my laptop computer. I'll give you my email so, if you
wish, you can get me directly. Good luck on your end. I'm wondering, should
anyone ask this question to TV talk show host Sue Johanson on Talk Sex with Sue?
Yours,
   janet3743   janet.lynch@...
   ----- Original Message -----
   From: josy_schmidt
   To: adultswithepilepsy@yahoogroups.com
   Sent: Monday, November 08, 2004 5:19 PM
   Subject: [Adults with Epilepsy] pregnancy and epilepsy



   Has anyone been gone through a pregnancy that has epilepsy.  I have
   been thinking about trying to get pregnant, but I don't really want
   to be on medicine.  The doctors make it sound like there is no other
   option and that medicine is no big deal while pregnant.  I'd love to
   hear your opinion.
   Thanks,
   Josy




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[Non-text portions of this message have been removed]

Dear Stuart,
    Boy! Now I have egg on my face. Well, maybe my diatribe about Dilantin will
eventually help someone. I saw your correction. I only know about Dilantin
Kapseals, Phenobarb and Mebaral. I don't have personal experience with anything
else. My meds are processed through the liver. I don't know about Lamical. I've
heard that some people take it. I have no personal experience with it. Sorry.
Take Care.
janet3743  janet.lynch@...
   ----- Original Message -----
   From: Stuart
   To: adultswithepilepsy@yahoogroups.com
   Sent: Friday, November 12, 2004 4:28 AM
   Subject: [Adults with Epilepsy] Apologies



   Sorry, It's Lamical I take - not Dylantin.




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[Non-text portions of this message have been removed]

Dear Stuart,
   Dilantin is also known as Phenytolin. For any of its side effects, I
wholeheartedly champion Dilantin Kapseals. In my case, puffy gums or more hair
or even talking alot is better than a seizure anyday & I have a good
neurologist. It's IMPORTANT to CHECK BLOOD LEVELS often. I've been on different
levels of Dilantin Kapseals since I was diagnosed with left temporal lobe
epilepsy, in 1957, when I was 2. The 30 mg kind are white with a pink band in
the middle. The 100 mg kind have a red band around the middle.
  You SHOULD KNOW that Dilantin DOESN'T work & play well with thyroid meds or
liver meds. Your liver is going to be busy processing or metabolizing Dilantin
so NO ALCOHOL for you. NO beer either! If you don't drink so much the better.
Stay away from herbals. There is a risk, maybe slight but it's a risk, that
herbals cause seizures!
  If you see a neurologist, or other specialist, ALWAYS have your GP or family
doc NETWORK with your specialist about Dilantin or pre-existing conditions.
Don't take no for an answer. If a doctor REFUSES to network, keep going until
you find someone who will. Don't be ashamed to do that professional's work for
them! Just because someone paid a hunk of money to become a doc DOESN'T make
them HOLY or a know-it-all. You want someone who LEARNS FROM YOU & who YOU can
learn from.
I'm coming the rescue & I'm not an athelete. Ha! HA! Pull up a comfortable
chair. Here we go. I'm a 49 yr. old, single caucasian female who's had left
temporal lobe epliepsy since she was 2, in 1957. I live in Lou., Ky. From ages 2
to 8, I had petit mal seizures. from ages 11 to 17, grand mal ONLY ONE a YEAR.
How? I don't know. MIRACLE : SEIZURE FREE FROM 1971 to 2000, when my doc put me
on thyroid meds and IGNORED the fact that I've ALWAYS been on Dilantin Kapseals
and either Phenobarb or Mebaral.
    Ready? I'm a lady, but YOU want to look out for PUFFY GUMS, FACIAL HAIR MAY
grow rapidly, examine your eye pupils regularly. If your pupils seem dilated,
you have too much meds in you & you can either use a (excuse me here, please)
Fleet's enema or citrate of magnesia (sorry). If you take too much Dilantin, you
may feel like you're all wound up on speed or something. BE SURE to get your doc
or neurologist to REGULARLY check your blood levels. As long as your blood level
is AT LEAST a 10, NOT above or below, you should be OK. ALWAYS follow
directions.
     In my teens, I was on as many as 700 mg Dilantin Kapseals and 600 mg
Phenobarb DAILY & they wonder how I made it through school without hurting
myself or suicide. As a high school senior, I developed a toxic reaction to
Phenobarb. My neurologist apologized & caught it. He did blood tests & switched
me over to Mebaral. I flushed out my system & was gradually weaned down to 100
mg Mebaral & 100 mg Dilantin Kapseals DAILY. All was well & I was, somehow,
seizure free from 1971 to 2000, about THIRTY YRS.
Excuse me if the paragraphs aren't in order, but there's alot to cover. See,
when I was younger, it seems the remedy for my seizures was to increase the med
doseage & , by the time I was 17, I wound up acting like a drunk with a toxic
reaction. When I was put on thyroid meds, in 2000, they raised my liver
function, raised my liver enzymes & raised my metabolism causing my body to rid
itself of Dilantin FASTER than I could process it. Hence, my blood level sank to
4 & , for THREE YEARS 24/7, I had simple, partial seizures.
  Oh, the Dilantin does WAS raised to 500 mg daily-no help. Oh, the meds were
taken at different times - no help. Dilantin and ANY form of LEVOTHYROXINE DON'T
MIX. I CAN tell you that Dilantin NEVER caused amnesia in me & I've NEVER heard
of such a thing. Seizures may cause a bit of amnesia but, in my own life, I
haven't had that happen with dilantin. This helpful hint: Zucchini CLEANSES the
liver. Start liking zucchini. Believe it or not, cocker spaniels develop
epilepsy and my friend fed her epileptic (grand mal) cocker spaniel bits of
zucchini & the vet was surprised that zucchini caused Dilantin to be more
effective.
  You'll find that other treatments for things & any other meds you take for
things MUST be sculpted, if you will, AROUND your dilantin. When you take
dilantin, one size DOESN'T FIT ALL with regard to therapies or treatments. You &
Your doc MUST realize that. If epileptic women get pregnant, they must INCREASE
their meds during pregnant, due to hormones. There's a chance, they may have a
seizure. At midlife, hormones again can cause seizures. TAKE NO HORMONE
REPLACEMENT THERAPY OR REPRODUCTIVE SYSTEM HORMONES OF ANY KIND! It'll trigger a
seizure.
    If you develop thyroid trouble, try looking into a health food store for
natural, not kooky, alternatives. My neurologist says AMINO ACIDS, MINERALS AND
VITAMINS ARE OK. NO SOY OR BLACK COHOSH! NO HERBALS. My neurologist, his office
has kept me alive since I was 2, says "If you or I can't pronouce it. Don't take
it. Better safe than sorry!" The dose of Dilantin you take at 39 may be
different than what's prescribed for you at 50. I know men have hormones, too.
Hormones can take you for a loop! When you get to be 50, you may want to ask
about a supplement called DHEA 5. You take ONE 5 mg tablet DAILY - first thing
in the morning & it'll boost waning adrenal levels of adrione or something to do
with testosterone? I can't pronounce adrenal hormones ending is o-n-e. It helps
mood & memory & is OK with dilantin.
  Be glad to talk anytime. Depending on your location, you may want to look up
the Andrew Reiter Clinic in Santa Rosa, Calif. www.andrewsreiter.com  I think.
There are site that tell you what drugs will interact. Is it
www.pharmacyonlinerx.com   Some combination of that or maybe you can use a
search engine. The site may be a bit frustrating to use, but, before you pull
any hair out, hopefully you'll get where you're going. Again, except for some
gum puffiness - keep brushing, the hair issue may be different for guys - I LIKE
DILANTIN. NO MAJOR SIDE EFFECTS IF USED AS DIRECTED. Don't overdose or you'll
feel like you're on speed or too sleepy. Get your liver panels or blood levels
tested often. That's how you prevent a build up and prevent your liver being
eaten up.
   Again, sorry to be long winded. It's a shame that it takes us YEARS to get
information & that so many roadblocks are raised. I'm very, very sorry about
your other conditions & episodes. I'm also sorry that I can't be there in person
to help you. Oh, I should say that my last simple, partial seizure was 4/15/03,
my last grand mal seizure was in April of 1971 and, with my neurologist OK, I've
been driving since I was 23. I take my meds daily. I have a laptop, but I'm not
on my computer constantly. I left my email so, if you choose, you can directly
contact me. Take Care!
janet3743  janet.lynch@...
   ----- Original Message -----
   From: Stuart
   To: adultswithepilepsy@yahoogroups.com
   Sent: Friday, November 12, 2004 4:26 AM
   Subject: [Adults with Epilepsy] Dilantin Side Effects



   Hi everyone, I've just joined your group.  To tell you a little about
   myself, I'm 39 years old now and developed temperal lobe epilepsy at
   the age of about 8 years old.  I was born with spinabifida and
   hydracephalus - then had meningitis at the age of four.  I have two -
   four seizures a month now.  Can I ask if anyone knows much about the
   side effects of Dilantin please?  I've just been through a very rough
   patch of amnesia and I'm not convinced the medication was entirely to
   blame.  If anyone could chat with me regarding this, I'd be very
   grateful.  Many thanks.




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[Non-text portions of this message have been removed]

Sorry, It's Lamical I take - not Dylantin.

Hi everyone, I've just joined your group.  To tell you a little about
myself, I'm 39 years old now and developed temperal lobe epilepsy at
the age of about 8 years old.  I was born with spinabifida and
hydracephalus - then had meningitis at the age of four.  I have two -
four seizures a month now.  Can I ask if anyone knows much about the
side effects of Dilantin please?  I've just been through a very rough
patch of amnesia and I'm not convinced the medication was entirely to
blame.  If anyone could chat with me regarding this, I'd be very
grateful.  Many thanks.

Hi,

I don't know what anti-seizure drug you are taking, but this article
was in the paper today about pregnancy and epilepsy drugs.

Susan


--- In adultswithepilepsy@yahoogroups.com, "josy_schmidt"
<josy_schmidt@y...> wrote:
>
> Has anyone been gone through a pregnancy that has epilepsy.  I have
> been thinking about trying to get pregnant, but I don't really want
> to be on medicine.  The doctors make it sound like there is no other
> option and that medicine is no big deal while pregnant.  I'd love to
> hear your opinion.
> Thanks,
> Josy

--- In adultswithepilepsy@yahoogroups.com, "justin"
<goodoldmrwilson@h...> wrote:
>
> I 25 yrs old im on dylantin and cand drink beer anymore

hi justin i'm becky i'm 22 on topamax and keppra my doctor said it's
okay to have two alcoholic drinks a week but not on the same day, and
to make sure you know how you feel when you drink them first so check
and ask your doctor like i did and if they say it's okay do it at
home first.

I 25 yrs old im on dylantin and cand drink beer anymore

Well Ive had  2 seizures down at UMD hospital the way I figure it
I had to have a new shunt put in after 23yrs my parents  and
everyone says im and epileptic well if someone took something out of
you that been in you for 20 plus yrs how would your body react
and i had a seizure last november before my grandma died
they say you dont rember much after a seizure put i do i rolled off
the couch and hit the floor
Would this compare me with and epileptic

Has anyone been gone through a pregnancy that has epilepsy.  I have
been thinking about trying to get pregnant, but I don't really want
to be on medicine.  The doctors make it sound like there is no other
option and that medicine is no big deal while pregnant.  I'd love to
hear your opinion.
Thanks,
Josy