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Medical Forum / Diseases and Disorders / Epilepsy / August 2005

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"The Heat"

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precious - 21 Jul 2005 18:08 GMT
anyone relate seizures with the summer heat?

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Money doesn't just talk, it swears.

-=Biscuit=- - 21 Jul 2005 18:52 GMT
precious <georgek@humboldt1.com> delighted us to no end by taking a
lime green crayon and scribbling in news:georgek-
44693E.10081021072005@corp.supernews.com, on the hallowed day of
Thu 21 Jul 2005 10:08:11a:

> anyone relate seizures with the summer heat?

I know that since changing meds (to the evil Neurotin) my fiance`'s
having a *terrible* time with both heat and light. And it's sad,
since he used to *love* the sun. When he first moved here, he
couldn't be outside enough.

I hate what that drug has done to him :(

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-=Mara=-

Come to the dark side....we have cookies.

I reject your reality, and substitute it with my own!

Mary Fisher - 21 Jul 2005 21:06 GMT
>> anyone relate seizures with the summer heat?
>
[quoted text clipped - 4 lines]
>
> I hate what that drug has done to him :(

Has it had no good effects at all?

Mary
-=Biscuit=- - 22 Jul 2005 04:09 GMT
hallowed day of Thu 21 Jul 2005 01:06:25p:

>>> anyone relate seizures with the summer heat?
>>
[quoted text clipped - 8 lines]
>
> Mary

Not that I have seen....no. It's completely changed his personlity
so that he doesn't care about anything...and he's giving up. On
everything.

I realize different medications react differently on different
people...but this is like watching someone change from street
drugs, and not be able to help them.

He's says it's life....that he's tired of fighting, and I
understand that feeling, but...he didn't feel this way when he was
on Tegretol. He was a fun, loving, postive, upbeat person. Someone
I thought I'd be spending the rest of my life with. Now thanks to
neurotin...

I'm sorry. I'm running off at the mouth / fingers. He suggested
months ago I start posting here, for support, so it's not like I'm
talking behind his back, but it feels that way :(

Signature

-=Mara=-

Come to the dark side....we have cookies.

I reject your reality, and substitute it with my own!

Mary Fisher - 22 Jul 2005 10:29 GMT
>>> I hate what that drug has done to him :(
>>
[quoted text clipped - 5 lines]
> so that he doesn't care about anything...and he's giving up. On
> everything.

So why does he continue with it?

Mary
-=Biscuit=- - 23 Jul 2005 03:30 GMT
hallowed day of Fri 22 Jul 2005 02:29:38a:

>>>> I hate what that drug has done to him :(
>>>
[quoted text clipped - 7 lines]
>
> So why does he continue with it?

He started tapering off, as of last Monday. But as he's explained
to me, taking a drug that alters your thinking...stops you from
thinking clearly.

He's tapering off of it VERY fast, but oddly enough I haven't seen
him have seizures of any type, not even absence ones or partials
like he was having in his sleep. And the less he takes, the more he
seems like "him"...but the overwhelming depression is still there.
:(

He's called his doctor...who's no help, in my opinion.

ANyway...thanks for listening.

Signature

-=Mara=-

Come to the dark side....we have cookies.

I reject your reality, and substitute it with my own!

G.Ross - 25 Jul 2005 21:48 GMT
> hallowed day of Fri 22 Jul 2005 02:29:38a:
>>
[quoted text clipped - 21 lines]
> He's called his doctor...who's no help, in my opinion.
> ANyway...thanks for listening.
How difficult is it for him to change Doctors?   If he's dropping the
levels of his AED without the Dr. supervising it, he might get side effects
that should be watched for.   That's not his job (or your's), it's the
Prescribing Doctor's.   I expect that's why Malpractice Insurance is so
costly.
 Have you ever talked to the Doctor, and would he (your fiance) want you
to? Perhaps the Doctor is not aware of the way he's reacting to the
Medication, and often an outside witness is a more reliable source of how
we're behaving than we might be ourselves.
   Alternatively, if he's got an appointment with his Doctor soon, you
could compose a description (like you did above and earlier), of the
behaviours you're concerned about, and how the Med. has changed his
personality.   Make sure you include the part above and on earlier posts
about him not caring and giving up on everything -- that should be something
the Dr. should be made aware of, as some of those things, including
depression, can be a negative warning with some of the Anti-Ep. Drugs, and
might signal a need to change (again! :-<  ).
    I think it was 'Howdy Dave' when he was posting more, who said he had
to try something like 6? or 7 Meds. over the course of many years before he
found the ones that worked for him.

  Another thing -- are you near a large city that has an Epilepsy
Association, and would he be willing to go to 2 or 3 'group' sessions that
some of them have either afternoons or evenings to discuss (among people in
like condition)  what it's like and how they're feeling about having to live
like this?   The one near me has consultants who meet one-on-one with either
newly diagnosed people or people and their family members.   If he's been
coping in various forms with this for a number of years, he may not be
interested in that, and thus might not get anything out of it.  /G.
Dave ©¿©¬ - 26 Jul 2005 07:37 GMT
> > hallowed day of Fri 22 Jul 2005 02:29:38a:
> >>
[quoted text clipped - 50 lines]
> coping in various forms with this for a number of years, he may not be
> interested in that, and thus might not get anything out of it.  /G.

Howdy!

Actually, more like 10 or 15 meds over 35 years without ever finding
anything that gives me TOTAL control.

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Dave ©¿©¬

http://www.howdydave.com

G.Ross - 30 Jul 2005 04:48 GMT
> "G.Ross" <> wrote in message
*******<  >*************
>>      I think it was 'Howdy Dave' when he was posting more, who said he
>> had
>> to try something like 6? or 7 Meds. over the course of many years before
>> he
>> found the ones that worked for him.
 /G.

> Howdy!
> Actually, more like 10 or 15 meds over 35 years without ever finding
> anything that gives me TOTAL control.
So,   That's what I need to do to get you to show up.  I'll have to remember
that.  There were some questions scattered over the last week or so that I
thought you'd have more experience or history with than some of us who were
trying to provide answers at the time.
  I had even thought that when the percentage of posters who were women
exceeded 70% that That would be Bachelor bait, but no, it was Quiet here...
:-<      /G.
Dave ©¿©¬ - 30 Jul 2005 06:05 GMT
> > "G.Ross" <> wrote in message
> *******<  >*************
[quoted text clipped - 15 lines]
> exceeded 70% that That would be Bachelor bait, but no, it was Quiet here...
> :-<      /G.

Howdy GR!

I've been gettin' pretty deep into my yoga lately.

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Namaste

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

http://www.howdydave.com

G.Ross - 30 Jul 2005 15:54 GMT
> "G.Ross" <> wrote in message
>>
> Howdy GR!
> I've been gettin' pretty deep into my yoga lately.
What, like "Om ma gosh, I found yoga helps? "   :-<  G./
Dave ©¿©¬ - 30 Jul 2005 17:19 GMT
> > "G.Ross" <> wrote in message
> >>
> > Howdy GR!
> > I've been gettin' pretty deep into my yoga lately.
>  What, like "Om ma gosh, I found yoga helps? "   :-<  G./

Howdy GR!

Actually, I don't do the OM routine...

I'm into Jnana yoga! Jnana is "yoga in your head."

For anybody else who might have given any thought to yoga, don't forget that
Hatha isn't the only option...
there is also: Raja, Bhakti and Jnana.

Signature

Namaste

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

http://www.howdydave.com

John Porter - 03 Aug 2005 10:08 GMT
"G.Ross" <gaross@rogers.com> wrote in news:ffydnQMrY8kvCHbfRVn-
1Q@rogers.com:

>> "G.Ross" <> wrote in message
>>>
>> Howdy GR!
>> I've been gettin' pretty deep into my yoga lately.
>  What, like "Om ma gosh, I found yoga helps? "   :-<  G./

I have not tried yoga ( yet ) but I have tried basic meditation some
simple mind relaxing hypnosis things I found from a good sorce ( most
free )! But I am kind of shy about " watching " flashing lights " and
spinning wheals!  I get ' nuph of that stuff at the movies! I will be 50
on Aug 6 but I look, feel and act more like 30+ ;-) the only hitch is my
epilepsy that I got just before my last year of High School!  - I still
don't rember how I got though that one LOL!

John - in Honolulu!
-=Biscuit=- - 03 Aug 2005 22:11 GMT
25 Jul 2005 11:37:55p:

> Howdy!
>
> Actually, more like 10 or 15 meds over 35 years without ever
> finding anything that gives me TOTAL control.

wow...

Signature

-=Mara=-

Come to the dark side....we have cookies.

I reject your reality, and substitute it with my own!

-=Biscuit=- - 03 Aug 2005 22:09 GMT
Mon 25 Jul 2005 01:48:44p:

>> hallowed day of Fri 22 Jul 2005 02:29:38a:
>>>
[quoted text clipped - 22 lines]
>> He's called his doctor...who's no help, in my opinion.
>> ANyway...thanks for listening.

Sorry for the delay in replying...life got a little "beyond
stressful" for a bit there.

>  How difficult is it for him to change Doctors?

It's possible, but there's a couple of issues with that. One is
that to get this HMO (Kaiser) as a medigap insurance, he had to
sign-over his medicare benefits to them. He only "gets those back"
if he formally cancels his Kaiser coverage.

He has 3 very serious medical issues to deal with, only one of them
being the epilepsy, and he sees 3 different doctors at Kaiser. The
neurologist is actually the best in the lot, and my SO seems to
have a good rapore with him.

He also, until a couple of days ago, didn't *want* to look at other
options, and I can totally see his point. The beraucrisy and BS
that comes with trying to get treated through an HMO is mind-
boggling. His other 2 doctors are basically are refusing to treat
him for those conditions...and that can be and was very
overwhelming.

However...he is now willing to look at other options, and I'm more
than willing to help him to the research. I've suggested finding a
private physician and paying "retail" for a consultation until he
decides if dropping Kaiser is worth it to change doctors. *I* think
it is, as I never dreamed that a large medical organization would
make medical decisions based on $$$ and not on what will prolong
the patients life.

Yes, I know...I'm naive.

>  If he's  dropping the
> levels of his AED without the Dr. supervising it, he might get
> side effects that should be watched for.   That's not his job
> (or your's), it's the Prescribing Doctor's.   I expect that's
> why Malpractice Insurance is so costly.

Yes, I agree it wasn't the best way to do it. Kids...don't try this
at home!!! Have I forgot to mention his real name is "John Wayne"?
:)

>   Have you ever talked to the Doctor, and would he (your
>   fiance) want you to?

His first trip to see this doctor he asked me to be there (and I
was happy to go). Not having been through this sort of meds change,
I didn't know what to expect. Now I know the questions to ask! And
some of this is in my fiance's difficulty in even talking with
doctors about his illness, which he's told me is fairly common
among epileptics. He has trouble even saying the word outloud, even
to a doctor. So, in all fairness to his doctor, when he would call
the doctor and say "I'm not doing so well", the doctor doesn't
really have a clear view of HOW BAD he's doing.

Since the relationship with this doctor is new, the doctor doesn't
know that my fiance's head needs to be about splitting open before
he'll say a word of being in pain. He sees the neurologist again
tomorrow, and we're going in together. And if it's ok with my SO,
I'm going to tell the doctor how bad he got...because I don't think
the doctor quite got it.

> Perhaps the Doctor is not aware of the way he's reacting to
> the Medication,

Agreed, very much. Not because the doctor doesn't care (though I
can neither confirm or deny this, just trying to be objective), but
because "I'm not doing so good" isn't very descriptive.

> and often an outside witness is a more reliable
> source of how we're behaving than we might be ourselves.

THANK YOU!
God bless you for saying that, just to confirm my own reality :)

>     Alternatively, if he's got an appointment with his Doctor
>     soon, you
[quoted text clipped - 6 lines]
> a negative warning with some of the Anti-Ep. Drugs, and might
> signal a need to change (again! :-<  ).

Yes, and again, thank you. He's been completely off the neurotin
for 5 days now, and even in that short amount of time...I've seen
the man I love come back into his body. The side effects of the
withdrawals have been horrible for him, and yet he's doing so much
better than I ever expected.

No grand mals, just a little shakes (which he's had on every med).
We both know it wasn't a good idea to ramp down so quickly and
without a doctor's supervision, and I certainly wouldn't want to
give anyone reading this the idea that doing that was the right
thing to do...but he did it.

>      I think it was 'Howdy Dave' when he was posting more, who
>      said he had
> to try something like 6? or 7 Meds. over the course of many
> years before he found the ones that worked for him.

Yeah, I've read that in many of the support forums, as well as my
fiance sharing his experiences, and the fact there's only a limited
selection of meds he CAN take, because of his other medical issues.

>    Another thing -- are you near a large city that has an
>    Epilepsy
> Association, and would he be willing to go to 2 or 3 'group'
> sessions that some of them have either afternoons or evenings
> to discuss (among people in like condition)  what it's like and
> how they're feeling about having to live like this?

Oh heck yah!

I looked up a list of support groups (as did he a couple months
ago), and I was *thrilled* when he said he wanted to go last week
:) Unfortunately, the group we went to had been cancelled 2 months
prior, and the epilepsy foundation hadn't updated their list. But
there's another in a week closer to home (this one was an hour
away, but heck, the drive was nice!).

>  The one
> near me has consultants who meet one-on-one with either newly
> diagnosed people or people and their family members.   If he's
> been coping in various forms with this for a number of years,
> he may not be interested in that, and thus might not get
> anything out of it.  /G.

Exactly...even though *I* would get something from it...I was
waiting until *he* wanted to go. I've been in a support group for
family and friends of alcoholics for 15 years, and I know it's
impossible and fruitless to help someone until they themselves want
the help.

Things are much, much better for us, for me, and for my fiance,
now. I can't be sure...but I think we're through the worst of it.
Once he got the neurotin (mostly) out of his system...he saw that
what I'd been saying about what I was seeing in him/his behavior
was true. I explained to him then and now, that I have nothing to
benefit by telling him anything other than the truth...but I
understand how much trust that takes, and that will take time.

S'Ok...I plan on being with him the rest of our lives...and I'm a
patient woman...I can wait ;-)

Thanks "G"...for everything. You're a good egg, ya know?
:)

Signature

-=Mara=-

Come to the dark side....we have cookies.

I reject your reality, and substitute it with my own!

G.Ross - 21 Jul 2005 22:27 GMT
----- Original Message -----
From: "-=Biscuit=-" <mara@no-address.com>
Newsgroups: alt.support.epilepsy
Sent: Thursday, July 21, 2005 1:52 PM
Subject: Re: "The Heat"

> precious <georgek@humboldt1.com> delighted us to no end by taking a
> lime green crayon and scribbling in news:georgek-
[quoted text clipped - 9 lines]
>
> I hate what that drug has done to him :(

*G* Was he sensitive to light before?   Some types of szrs. have more
sensitivities to that, air pressure changes (mine), heat or cold,  crowds,
strobing etc.
  (My Tegretol has an advisory about being careful with Sunlight exposure
as we might burn more easily than if we weren't using it?  from memory.)
  I've never used Neurontin, but why do you think it's 'that drug'  that
has made the changes?    Some of the causes that produce the seizures can
affect either bloodflow or neuron functioning, and it might happen with or
without the med.  Don't you think?   G./
-=Biscuit=- - 22 Jul 2005 04:15 GMT
Thu 21 Jul 2005 02:27:53p:

> ----- Original Message -----
> From: "-=Biscuit=-" <mara@no-address.com>
[quoted text clipped - 17 lines]
>
> *G* Was he sensitive to light before?

No. He used to joke about being "solar powered."

>  Some types of szrs.
> have more sensitivities to that, air pressure changes (mine),
> heat or cold,  crowds, strobing etc.

Yeah...those have all been a problem for him now. And I do
understand that any meds change is going to have some problems and
take some time for the brain to adjust. I never dreamed it would
turn him into a different person.

>    (My Tegretol has an advisory about being careful with
>    Sunlight exposure
[quoted text clipped - 3 lines]
>    drug'  that
> has made the changes?

Tegretol stopped working for him and he was going toxic. But on
Tegretol, he was a different person than on the neurotin. Basic
components about his personailty are different now. Bad different.

>   Some of the causes that produce the
> seizures can affect either bloodflow or neuron functioning, and
> it might happen with or without the med.  Don't you think?  

Anything is possible, but even after a few bad seizures while on
Tegretol, his personality was still the same. After a month - 6
weeks on Neurotin...he's changed to someone with no emotions and no
will to live.

-=Mara=-
Beck - 22 Jul 2005 10:49 GMT
I don't have problems with heat, but I definitely have mood changes and the
things my doc calls Petite Mals during overcast/cloudy days.
Beck.
> anyone relate seizures with the summer heat?
CyberCafe - 22 Jul 2005 18:35 GMT
> anyone relate seizures with the summer heat?

Been lucky so far and haven't had that problem yet.  Makes sense that
heat could contribute indirectly to provoking seizures.  It's stuff like
poor sleep due to the heat could make things worse.  I don't know if a
person's sun exposure would do anything as far as AED drug reactions,
but I know at one point when I worked for a sheltered workshop they had
to pull some clients off outdoor summer work because some people were
having drug reactions due to sun exposure.  After reading your question,
I looked on the internet and some sites are indicating heat can
contribute to less seizure control because of the changes in your body
that can happen during extreme heat.  Stuff like increased body core
temperature, dehydration (electrolyte loss/changes can affect brain
function), etc.

Sometimes medications can degrade or lose stability when outside of a
specific temperature range. Just looked up my drug, Dilantin, at
rxlist.com and max storage temperature is 86 degrees.

Barb
pipercub49 - 23 Jul 2005 18:49 GMT
OK when it is hot out you drink more and it dilutes your AED meds and
then they do not work as well. Also I am on Zonegran and it is known to
cause heat stroke so I have to be careful in this hot weather. But then
I also can't over due it with the water cause it will make my Dilantin
level go down and cause more seizures. Don't you think all medacations
are going to have some type of side affects. But then seizures can have
even worse side affects so you got to weigh the pros and cons and find
the meds that will work best for you with the least side affects. It
would be great to be able to take a medacation and have it stop a
seizure and that would be that but it just is not going to happen. The
best a person can do is to make sure they have a Dr. that will try to
control their seizures with the least amount of medications. I have a
DR. like that who listens to me but is at this time unable to control
my seizures with only 1 or 2 meds. I even went else where to see
someone else and right now I am on  4 AED meds.I was on Neurotin and it
was horrible and my Neurologist took me off of it. The Dilantin makes
me tired but I can live with that. The Keppra makes me sad at times but
I am slowly being taken off of that. the Klonopin I just take a night
and I don't think it really affects me. the Zonegran Has really
lessened my seizures alot. But this summer I can really not handle the
heat. And the heat has never bothered me before. But Iam down to 2
seizures a week as to 3 -5 a week. so I just will stay out of the heat.
Mary F.
Mary Fisher - 23 Jul 2005 20:17 GMT
> OK when it is hot out you drink more and it dilutes your AED meds and
> then they do not work as well. Also I am on Zonegran and it is known to
[quoted text clipped - 19 lines]
> seizures a week as to 3 -5 a week. so I just will stay out of the heat.
> Mary F.

Most conditions in Life are complicated.You seem to be managing yours to the
best effect and for that I congratulate you.

I'm even more pleased that you're not complaining :-)

All life, whether we have epilepsy, cancer, broken legs or whatever, is a
challenge to overcome those things as well as possible.

The alternative is not good at best, unthinkable at worst.

The other Mary F>
BillX - 24 Jul 2005 18:20 GMT
Your comment about drinking more fluids on hot days diluting your AED
is an interesting concept.  I was told that the molecules in AED are
too large to be secreted in the form of persperation.  Perhaps
increased fluid volume illicits a diaretic response and some of the AED
is secreted through that channel?

Despite being on a combination of Dilantin/Keppa I'm still having 1-3
simple partial seizures per day.  Running long distances really
aggrevates my problem so perhaps there is something to this increased
fluid intake thing.
G.Ross - 25 Jul 2005 05:17 GMT
> Your comment about drinking more fluids on hot days diluting your AED
> is an interesting concept.  I was told that the molecules in AED are
[quoted text clipped - 6 lines]
> aggrevates my problem so perhaps there is something to this increased
> fluid intake thing.

Probably most of the AEDs pass from the stomach into the other organs or
bloodstream within 1-2 hours after they are taken, so increased water use
after that point doesn't dilute the level of medication much at that point.
 In your case though, you're Running long distances, so your metabolism,
heart rate and other functions are probably doing more to flush your blood
levels faster than those of us who aren't doing long distance running. Also
when you do your Running, relative to when you take the Medication dose,
might have more of an effect on how it's metabolized than the rest of us.
(Except when it's a lot about 30 degrees C (86F) and high humidex, I often
walk 3-6 miles a day, and have since before I was having seizures.  I expect
that I'm used to that fixed rate, since I haven't needed a dose adjustment
for about 10 years.)   G./
jacque1in@yahoo.com - 22 Jul 2005 19:04 GMT
We have to be very careful with my son getting overheated or he'll
seize.  We first noticed it a couple of years ago on a cross-country
car trip during the summer during a hot spell with no A/C.  He had
continuously little shaky jerks all through Pennsylvania, had a grand
mal when we finally got to Arkansas (even though we were in air
conditioning by then), and continued to have shakes all through the
return trip.  Since then, he's shown those series of small, shaky
seizures almost any time he's overheated, so we've learned to be
extraordinarily careful.  He's required to have air on the school bus
and we don't let him do anything for a long time outside in the summer
if it's too hot and humid (and we've had a LOT of hot and humid days
this summer.) For instance, going to an amusement park for the day on a
hot summer day in the sun is out of the question.  It's just asking for
trouble.

We're also keeping the house cooler this year because if he starts to
get overheated even at home, he'll start to tremor more and his grand
mal rate goes up.

So, yeah, definite relationship between summer heat and seizures for
us.

Jacque1in
pipercub49 - 25 Jul 2005 05:37 GMT
Jacque1in, I have a friend who's son is severely brain damaged and he
has all kinds of seizures. I wont get into what they had done for him
after the accident to help him. But it did not work.Not only does the
heat start him to have seizures but just a slight rise in his body
temp. and he is off to a very bad day. But also the weather changes
like a storm coming in be it rain or snow you can tell before it shows
in the skies because he starts jerking alot and then will have seizures
that just wont stop. She took him to a new Neurologist and mentioned
this about the weather changeing and how she would be able to tell
because of his vast increase in seizures and this is the first
Neurologist that said well yes he has alot of water on his brain and of
course it is going to affect his seizures. What is sad for him is now
all they can do is make him comfortable and try to control his seizures
the best that they can. But after 17 years this poor boy has been
through so much. And yes the heat does affect him alot. You just avoid
it for him period. Some days they even just keep him home from school
because the going outside to get on the bus and going off the bus to
get in the school sets him off to a day full of seizures and jerking.
He is able to attend school all year round. But when it is this hot it
is not worth it. Mary Finney
jacque1in@yahoo.com - 25 Jul 2005 16:56 GMT
Mary, my son also has migraines, and although his are not
weather-sensitive, mine are.  I can tell bad weather is coming by my
own migraine sensitivity, so I am not at all surprised your friend's
son would also have seizures from a change in weather as well.

Jacque1in
 
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