Recently Diagnosed With Tons of Questions. Posted: 07-11-04 21:11pm
First of all, i'm very sorry this will be
so long. But please be patient and read
all of this and help me!!!!
I am a 30 y-o female who has had headaches
my entire life. When I was 7 years old,
I remember hurting so bad and my father
telling me I was too young to have
headaches. My headaches got worse in my
teenage years. My young adult life I
went to so many different neurologists.
No one could find anything wrong with me.
All mri's, cat scans, etc, all came back
normal. I've been put on beta-blockers,
anti-hypertensive meds, etc and to no
avail. Nothing has ever helped my
headaches. Headache and migraine over
the counter and prescription meds have
only sometimes worked. I can honestly
say, that my head hurts all day, everyday!
And with an average of 16-20 migraines a
month.
Anyway, 3 weeks ago I developed abdominal
pain (which has nothing to do with my
story) but in the car on the way to a
hopeful fun day, I realized I was hurting
so bad, that I asked my husband to take me
to the er, because I felt like I was about
to pass out from the pain. (by the way,
I ended up being a ity bity cyst on my
ovary that burst; like I said; that is
irrelevant) the next thing I know, I
realize we're speeding through town with
our hazard lights on. I had passed out.
Only for a matter of seconds. When we
got to the er, my husband told the nurse I
had passed out and that my face was
twitching. Twitching, that's all. And
just my face. Throughout the day, I
fainted 3 more times, not related to
orthostatic hypotension. They admitted
me for unexplained recurrent syncopal
episodes. (my ovary was fine, by then)
lol
while in the hospital, they ordered an
eeg. I've never had an eeg. Why? I do
not know. Over 20 years of
headaches/migraines and not one
neurologist thought to do an eeg!!!
Imagine that!!!!
It came back abnormal. The results were
not read by the neurologist on call, until
2 days after I was discharged from the
hospital. They recommended I see a
neurologist with the diagnosis of abnormal
eeg. I saw a different neurologist, than
who read my eeg. He said I had epilepsy
and that all these years, my headaches and
migraines were more than likely a form of
seizure.
Has anyone ever heard of that??? One
tiny episode of twitching in my face. No
gran mal, no whatever other kind of
seizures. (i don't even know the names
of anymore seizures; this is all so new to
me)
do I get a 2nd opinion? Do I get a 2nd
eeg done? He put me on neurontin to
increase up to eventually 2400 mg daily.
And o2 every night before bed.
What do I do? Do I trust this diagnosis
of epilepsy from one abnormal eeg . I
would love to think my headaches will get
better. I have noticed a difference in
my headaches, alittle. But it's only
been a week or so on this medicine.
I'm just finding it hard to believe that I
truelly have epilepsy with one small
episode of twitching of my face, while
unconcious. Of course the doctor said
there was a reason I passed out so many
times.
Please give me advise!!! Someone, please.
|
SleepyJen
New User, Becoming EHEALTHy
Joined: 31 May 2004 Posts: 41 Location: NYC
Migraines Related to Epilepsy Posted: 07-12-04 01:31am
Always get a second opinion if you're not
sure.
I've been going to neurologists (i
switched a number of times) since I was 5
when I started complaining about
headaches. I was diagnosed with
migraines, but all medication did was make
me drowsy. Sometimes they left me in my
bed with an ice pack on my throbbing head.
Although I often had episodes in which i'd
see colored lights before my headaches,
the doctors kept saying migraine. Some
said 'complicated migraine.' one even
said 'migrilepsy' whatever that is! It
turns out those episodes had been seizures
all along, and they were followed by
migraines. I wasn't diagnosed until the
seizures got a lot worse and then I had a
grand mal when I was 15. The diagnosis
surprised me, although if I had known
anything about epilepsy at that time it
shouldn't have. I guess they had been
reading all my eegs wrong or something.
They neglected to pick up on a structural
abnormality in my brain on both my ct scan
from when I was 5 and from more recent
mris. (since then i've found a good
doctor)
anyway, for me, it was small seizures that
would be followed by migraines. The
seizures could be so small that no one
could tell I was having one. (i just saw
a ball of different colored lights
spinning.) by the way, my headaches are
much better now; I rarely get a bad one,
and most can be controlled with advil. I
think my epilepsy meds (specifically
depakote) help the migraines.
I hope this helped,
jen
|
amijoy
New User, Becoming EHEALTHy
Joined: 11 Jul 2004 Posts: 21 Location: Georgia
Posted: 07-12-04 16:39pm
Where do you live and who is your
neurologist? It might even be worth the
long travel. But it would really be cool
if it were close.
Anyway, recently (like last night) I read
that neurontin does not work alone.
Shouldn't I be on something else to go
with it? What do you think about getting
another eeg done? Would it give the same
results? I told the neurologist that I
was having a horrible migraine at the time
of the eeg procedure. He said it
wouldn't have mattered. The results
would be the same. But everyone i've
asked, said no, that's not true.
I also didn't like his bedside manner.
You don't walk in the room, tell someone
they have epilepsy, and walk out to go to
the next patient.
Thanks for your advise, so far.
|
amijoy
New User, Becoming EHEALTHy
Joined: 11 Jul 2004 Posts: 21 Location: Georgia
Posted: 07-12-04 16:40pm
Where do you live and who is your
neurologist? It might even be worth the
long travel. But it would really be cool
if it were close.
Anyway, recently (like last night) I read
that neurontin does not work alone.
Shouldn't I be on something else to go
with it? What do you think about getting
another eeg done? Would it give the same
results? I told the neurologist that I
was having a horrible migraine at the time
of the eeg procedure. He said it
wouldn't have mattered. The results
would be the same. But everyone i've
asked, said no, that's not true.
I also didn't like his bedside manner.
You don't walk in the room, tell someone
they have epilepsy, and walk out to go to
the next patient.
Thanks for your advise, so far.
|
amijoy
New User, Becoming EHEALTHy
Joined: 11 Jul 2004 Posts: 21 Location: Georgia
Posted: 07-12-04 16:40pm
Where do you live and who is your
neurologist? It might even be worth the
long travel. But it would really be cool
if it were close.
Anyway, recently (like last night) I read
that neurontin does not work alone.
Shouldn't I be on something else to go
with it? What do you think about getting
another eeg done? Would it give the same
results? I told the neurologist that I
was having a horrible migraine at the time
of the eeg procedure. He said it
wouldn't have mattered. The results
would be the same. But everyone i've
asked, said no, that's not true.
I also didn't like his bedside manner.
You don't walk in the room, tell someone
they have epilepsy, and walk out to go to
the next patient.
Thanks for your advise, so far.
|
amijoy
New User, Becoming EHEALTHy
Joined: 11 Jul 2004 Posts: 21 Location: Georgia
Oops Posted: 07-12-04 20:40pm
Sorry about that. My computer kept
locking up and I thought it wasn't being
submitted. Guess I was wrong.
