NeuroTalk Support Groups - Tired of Tonic-clonics

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Tired of Tonic-clonics

Sorry for being M.I.A. folks .. been battling
with seizures - those stupid Catamenial E's,
especially last month on the 14th which landed
me in the Hospital with a hideous huge lump
on my left side of my head and my left knee
in a complete wreck, and I'm still recovering
from it - and to top it off; had another T/C
again on the 10th... *sigh*

As always -- happening in my sleep!
:mad:
It's strange when you don't know anything
about it until you wake up and you're hurting
and in pain and it's like ...
:confused:
"huh" and you're confused.

Same old, same old - been going on for years.

I will be seeing my Neuro on the 26th, been
bouncing back and forth between my Primary
and Neuro. It's getting to be old.

I want to "officially resign from being a Woman"
or at least register and sign up for Menopause.
(If it were possible) This is getting to be old.

I've been around; but hadn't been online very
much. My weight is way below 100 lbs now.
I have a feeling I'm going to be blocked back
in the Hospital and back on vEEG again ...
*sigh*

Does this ever end?

That sounds like an awful lot -- a friend of mine in the UK who has full-on T/Cs went for years without them and had her first in a long time last year sometime. She said she was absolutely wasted -- apparently, the body burns through a ridiculous number of calories in a typical T/C. Not surprising -- it sounds like every muscle in the body is trying out for the Olympics at the same time, and in a different event.

Might a concentrated high-fat, high-nutrient diet, like wrestlers or runners eat, come in handy for you?

(((Sharon)))

I'm so sorry to hear that you have been having so many tc sz. and that you ended up in the hospital. It can be a pain going through menopause I know my absence a cp sz. increased greatly during this time.
Try taking vitamin B12 1000 mcg. a day and also try the ketogenic diet food high in fat but low in protein and carbs. this helped me out a lot and it reduced my sz. during this time.
I have a cousin who had tc sz. in her teens and then they stopped when she went through menopause, I hope this is what happens to you and that you will be sz. free for the rest of your life just like my cousin. Here's wishing you well and May God Bless You!

Sue

Thanks Sue, I had been on and off with
peri and menopause; and then back to
normal - it's been asinine since I was
36. However my Doctors had me to keep
a log since fall of 2006 and now they have
a more specific track record.

I see the Neuro on the 19th after being
bumped up from the 26th, so just a few
more days ...

Had always been irregular since I first
started after 9½ years but before 10 years
old, and the cycle could start anywhere from
15 days to as long as 62 days (was recorded),
but I've been known to go as far as 53 days
and I've been known to have two cycles in
one month. Enough to drive you batty!

Gynecologist had been at his wits end long
time ago and threw in the towel; not even
the birth control pills would work - it either
was null and void effect or it actually provoked
seizures, for example.

My mom had been wanting me to have the
hysterectomy done but like the Epi said several
years ago, that the problem wasn't down there
but up here (pointing to the head).

I was even given Diamox and told to take it
15 days before the cycle starts ...
:confused:
NOW you tell me when that 15 days is going to
start? And oh the frustration ... Diamox was
scrapped in a hurry.

But now the Doctors have seen it all, that this
specific area that hasn't been under control,
typically 2 days before the cycle starts, I get
slammed with seizures - no warning whatsoever,
they just hit me totally unexpectedly. So I am
unsure how the Neuro or my Doctors are going
to handle or treat this.

My ID should be Premium Irregular!
:mad:
For that's what I've always been.

===================

Words & Numbers:

My diet is fine, I am very active - but they're
right now very concerned about this sudden
spiraling of my weight loss (even though I've
been on these same AED's for a long time and
it's not the meds); and they've performed
extensive lab work-up numerous times to find
other possible medical problems that might
be there (ie: diabetics / hyper or hypo thyrodism,
etc), but it's just my body is shutting down.

I am not a surgical candidate nor do I qualify
for any other options but medications.

They have all kinds of Scans & EEG's of all types
and it's all there and it's getting worse and worse.

So I am curious as what the Neuro has up in his
sleeve.

(I am also grateful and thankful that my Primary
and Neurologist - both being Professors, especially
my Primary who was a very long time Professor and
my Cardiologist who is superiorly brilliant and has
knowledge in Neurology as well - they all are in tune
with each other.)

Hi Sharon,
How are you feeling? I must admitt you are a puzzle to figure out. I've never heard of going through a cycle like you mentioned. I know when I was still having my cycle I would have sz. for 7-10 before my cycle then about 1 week later.
I've been on Diamox for 14 yrs. if not longer and when I first started it my neuro had me taking it 5 days before my cycle and it did help reduce the sz. because it was getting rid of the extra fluids in my body that were triggering sz. Within time I was put on the drug every day.
I know that yrs. later when I saw an epi for surgery he told me that my sz. may get more frequent and worse or they could decrease and get better it was all because I have TLE.
Just becareful with your weight because diamox can cause a person to lose weight, it makes you feel full and then you don't want to eat. I lost a lot of weight while on this drug but it has helped me the most along with mysoline (primidone) to control my sz..
I wish you only the best of luck and May God Bless You!

Sue

http://epilepsyfoundation.org/ecommu...eadjan2008.jpg

Ok this is a photo taken a few days after Jan 14th,
It's reversed because I'm snapping myself via a
mirror with my neighbor's hideous camera.

I do have Catamenial Epilepsy, but they seem to
strike the highest between Aug/Sept ---> Feb/Mar,
and it had been this way since I first started my
cycle a little after 9½ but before 10 years old.

In addition - I've suffered from tons of ovarian
cysts; and had to have 4 emergency surgeries
to have ovarian cyst removals; had 12 pregnancies
but only 1 live birth (to which I nearly lost that
one at the end of the full term birth even at 2
weeks overdue) - which resulted 11 miscarriages,
painful sex, and I could go on and on - I HATE
E! Even though I was married over 23+ years,
my ex couldn't take it anymore. (I've got titanium
clips so I can't have children anymore)

But even before that I had epilepsies - Gelastics,
Drop Attacks (Atonics), Grand Mals (Tonic-Clonic),
Grand-Mal w/Todd's Paresis or Todd's Paralysis,
Petite Mals (Absence), Jacksonian - but that was
just a little list as a child / teenager; then they
changed the terminology of everything where I
got lost! The Neuro who did a lot of my EEG runs
nicknamed me "scatter-brained" for a reason:
my seizures weren't confined to one location, and
had so many abnormalities, and in addition for
me to have a normal EEG was abnormal. He
made it clear I would never have surgery. (That
was declared DECADES ago)

AND HE WAS RIGHT - this Neuro is so highly
esteemed and regarded and respected by many
Neurologists and Epileptologists; that there's no
arguing with him, for he had been in practice
since 1958 (he's retired now), and his word was
final authority. He knew me exceptionally well.

There are Neurologists, Epileptologists, Professors,
and several Individuals whom I trust - that have
seen my medical records & reports; and to those
Individuals - they've seen a few of my medical
records & reports and it left them dazzled - just
reading the DECADES of this and that and that
and that ....

But as for the Medical Doctors, they've been
gathering it as a case study. One specific Neuro
from way up North desires for me to somehow
find a way to get up there to their Comprehensive
Level 4 which also has a Research Center there too
and so they can run further tests; for one thing -
they specialize in Women's Issues. I really want
to go; but for me to get there is an issue, it would
take me months for me to bike all the way up
there. I'm looking at bus fares and sponsors; to
see if there's a way to do it.

It might be possible for me to head up there from
all the way down here where I reside. They have
so much of my Medical Records, Info, Reports,
etc ... already. The other issue they would need
to work on is the Insurance (I'm in a different
State) so they're looking for a grant / research,
so they keep in touch with me via email.

When I inquired how long I would be up there;
I could be there for a week, 2 weeks, 3 weeks -
if their Brain Surgeon is able to do something
about it, I would have to recover first before I
could be "shipped back home".

So there might be hope, I pray!

:::: crossing fingers ::::

You are in my thoughts and prayers.

Darlene:hug:

http://dl3.glitter-graphics.net/pub/...bif3r2420j.jpg

I finally received a response, it isn't
going to work for me to head up North;
Insurance conflict. But they are getting
in touch with one University in my State;
to see if they're willing to accept me and
work with me, however - right now; all I
can do is wait. They do have an exceptional
Neuroscience Program there, but they do
not specialize in Women's Issues though,
but they do everything altogether, and it
might be the only option I have left.

Good thing about it is - I know 2 Neurologists
and a Medical Doctor down there so I can give
them a :::: buzz ::::: if I head down that way.

I'd wished it wasn't so long-winded, it's frustrating.

((((Sharon))))

How are you doing? I'm sorry to hear that things didn't work out with the insurance so you could head up north. You might want to call the Epilepsy Foundation so their lawyers can talk with the insurance co. If you are interested here's their phone number: 1-800-332-1000. They will back you up and support you all the way.
Just like you I have more sz. during the fall and winter and then in the spring and summer I have a lot less sz. My epi told me this was called "seasonal sz." and a lot of it has to do with the amount of light a person is getting during the day.
If I may ask where were you going to go to look into surgery? I was wondering if it was where I went at Strong Memorial in Rochester,NY. They are a big University Hospital who are always doing reseach.
I have family that lives a little north from you in Zephyrhills. Will all of you send some of that nice warm sunny weather up my way we're supposed to get an ice storm Tuesday and Wednesday along with a lot of snow.
Here's wishing you well and May God Bless You!

Sue