Sometime during October, I responded to a message about muscle
cramps, I had suffered with them while I was on depakote and explained
how my doctor had me add magnesium to help relieve them. I went on to
say that I like to switch medications every five to ten years because
of seen,un-seen or seemingly unrelated side effects. My Gmail inbox had
about 12 messages in the last week about my comments and that's fine,
but it's easier for me to post one message that others may also benefit
from then taking the time to compose 12 separate emails to everyones
comments or questions regarding that post. I'll try to respond in this
message in such a manner that I cover all the concerns, comments and
questions that were posed in those messages. The general theme of most
of the emails were to the effect that why on earth would any SANE
person with excellent seizure control, knowingly want to rock the boat
by changing medications! This is a very reasonable conclusion for most
everyone and myself, but let me expand on my personal experiences and
the subsequent obvious reasons for doing this and feeling this way.
First let me point out that I realize my situation may be very rare
because there are so many medications available today which can control
my seizures 100%.
In 1984, my neurologist started me on a very high dosage of
phenobarbital which kept me so drowsy that I began drinking up to ten
pots of black coffee per day to counteract the side effects. A
subsequent routine endoscopy revealed that I had developed ulcers and
esophageal erosions. My internist contacted my neurologist and he added
Dilantin and reduced the phenobarbital dose. My need for large amounts
of caffiene subsided somewhat, BUT after several years on dilantin my
liver function became elevated. My internist sent me for a liver CAT
scan and it was OK so he concluded that the dilantin was responsible
for the increased liver fuction and that nothing was inherently wrong
with my liver. Because of this my neurologist lowered my high dose of
dilantin and I began having seizures, so he added Mysoline and
everthing was OK for a while, but my liver function remained elevated.
In 2002, I fell and broke my hip because I had severe Osteoporosis
which was only diagnosed during my surgery to repair my hip. No doctor
had ever considered that I needed a bone density test which would have
discovered it before it became so severe because I am a male and most
bone density tests are reserved for post menopausal women. An elevated
liver function, which can mimmic cirrhosis of the liver, caused
minerals and calcium to be stripped away from my bones over the years
and hence the osteopororosis. That ended my days on dilantin and I
started on depakote which started another round of issues. Depakote
gave me the shakes and increased appetite which everyone describes and
I gained 30 pounds. Depakote also made my hair very curly, which I
didn't mind, but that made me suspicious of what it could be doing that
I couldn't see. Depakote also decreased my blood platelet count which
was eaisly corrected by adding folic acid to my vitamin supplements. My
osteoporosis is treated with fosamax, but now I'll have to stay on that
for life. Just what I need, another drug to take.
I've been on blood pressure medication for about two years because
of my weight gain and during my 2006 annual physical my internist
doubled my blood pressure medication dosage. My internist also remarked
that since 2002, when I began on depakote, my fasting blood sugar had
continued to climb to near pre-diabetic levels.
I saw my neurologist in August because I wanted to switch
medications and he agreed that because of my age, weight, blood
pressure, and fasting blood sugar levels it was time to change
medications. I've been on Lamictal since then with no noticeable side
effects so far, but I'm only up to 100m.g. twice a day. It is a very
slow process to begin Lamictal. I hope I covered everything which was
emailed to me with this long winded message.
My neurologist is nearing retirement and based upon his
recommendation, I already know which medication I'll request the next
time I switch medications, hopefully not until 2011 or beyond.
Jim
knm956@gmail.com - 28 Oct 2006 06:07 GMT
> In 2002, I fell and broke my hip because I had severe Osteoporosis
> which was only diagnosed during my surgery to repair my hip. No doctor
[quoted text clipped - 4 lines]
> minerals and calcium to be stripped away from my bones over the years
> and hence the osteopororosis.
Yeah, I just had an appointment a couple of days ago and my neuro
mentioned that that's a potential long-term side effect of Tegretol as
well (which also elevates liver function). No one ever mentioned that
before. He says "it's okay, you only need to worry about that after 15
or 20 years." Sure, but I've already *been* taking it for over 20
years!
> That ended my days on dilantin and I
> started on depakote which started another round of issues. Depakote
> gave me the shakes and increased appetite which everyone describes and
> I gained 30 pounds. Depakote also made my hair very curly, which I
> didn't mind, but that made me suspicious of what it could be doing that
> I couldn't see.
It didn't make mine curly, it just made it fall out!
> I've been on Lamictal since then with no noticeable side
> effects so far, but I'm only up to 100m.g. twice a day. It is a very
> slow process to begin Lamictal.
Once I got up to 100 mg of Lamictal it started really screwing with my
sleep. Whereas before, on just Tegretol, I had virtually no dreams or
really boring ones, combined with 100 mg Lamictal twice a day I got
very violent and lifelike dreams. I would wake up paralyzed with fear,
not sure whether I was awake or still dreaming, or whether what had
just happened was real or a dream. Plus I would never get to deep
sleep, so it felt like I hadn't slept at all. Fortunately, 50 mg twice
a day was a good intermediate level that counteracted some of the
effects of Tegretol without going too far. Now, after trying
zonisamide, I'm back on the Tegretol, but just 100 mg twice a day, as
opposed to 400 twice a day when I was taking it with the Lamictal. So
far it's been a week and haven't had a seizure, which is great but kind
of irritating if that means I could have been taking 1/4 the dose for
these last 20 years.
Karl