Topamax is working

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bugs@bugs.com - 04 Apr 2004 04:16 GMT

I started on Topamax two weeks ago tomorrow, Sunday April 4th. It has made
an amazing change in my life. I didn't expect it to work this soon but it
has. I can now tell a remarkable difference. I am currently on 50mg per day
and when I get on the full dosage I will be at 400 mg per day. I am fairly
good sized though. I have been taking Dialantin and Mysoline, the Doctor at
the Cleveland Clinic told me that those two meds actually work against each
other. She said the better of the two was the mysoline and once I get
theraputic on the Topamax she is going to start taking me off the Dialantin.
My gums are covering my teeth in some places and she said it is from the
Dialantin and I would probably need to see a dentist. She tends to think
they will not go down on their own. Here is the kicker, she wants me to come
back to the Clinic and do the monitoring. I am sure many of you here have
done that. The thing where they put you under video surveillance and start
reducing your meds and cause you to have seizures, it all sounded real good
until they told us the cost. It is going to be a minimum of 5 nights in that
room and that room alone costs $8500.00 per night. Now I do not have
insurance so needless to say I will not be doing this. I was hoping but
maybe it just wasn't meant to be. I am not driving right now, I had to hire
a driver, but I am going to work on getting this completely under control so
I can get back to where I used to be.

It has been a teriffic change just what has taken place so far, things are
only going to get better I know it.

I wish you all the very best.

Tim

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CyberCafe - 04 Apr 2004 06:52 GMT

> I started on Topamax two weeks ago tomorrow, Sunday April 4th. It has made
> an amazing change in my life. I didn't expect it to work this soon but it
> has. I can now tell a remarkable difference.

It's great to hear you doing better on Topamax.

> I am currently on 50mg per day
> and when I get on the full dosage I will be at 400 mg per day. I am fairly
[quoted text clipped - 5 lines]
> Dialantin and I would probably need to see a dentist. She tends to think
> they will not go down on their own.

I've had oral surgery a couple of times to remove overgrowth of gum tissue. It
appears to have been from the Dilantin also. The surgery only removes tissue
from the affected areas. Apparently, in most cases that tissue will not grow
back according to my dentist. The only thing I've noticed that helps prevent
this problem or reduce temporary gum swelling is to brush your gums as well as
your teeth and to floss regularly. I have fewer problems if I brush my gums as
far high up or low as the toothbrush will reach. The dental hygienist thought
brushing the gums was helpful because it reduced the amount of bacteria. They
do tell patients on Dilantin to take care of the teeth and gums, but I don't
think they emphasize this enough or tell the person that that includes gum
cleanliness in addition to tooth cleanliness.

> Here is the kicker, she wants me to come
> back to the Clinic and do the monitoring. I am sure many of you here have
> done that. The thing where they put you under video surveillance and start
> reducing your meds and cause you to have seizures, it all sounded real good
> until they told us the cost. It is going to be a minimum of 5 nights in that
> room and that room alone costs $8500.00 per night.

Good grief, that is high!

Barb

> Now I do not have
> insurance so needless to say I will not be doing this. I was hoping but
[quoted text clipped - 4 lines]
> It has been a teriffic change just what has taken place so far, things are
> only going to get better I know it.

> I wish you all the very best.

> Tim

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bugs@bugs.com - 04 Apr 2004 21:18 GMT

Yes Barb that is expensive. It is also why I am not going to have it done. I
have read the horror stories of others with Topamax and aslo my sister was
taking it for headaches and she could not tolerate it. I move today up to 50
mg per day and have had no side effects that I have noticed. My doctor told
me to take it real slow or the side effects would come. She also said that
most try to start out to fast. I ask my sister what her doctor started her
on and it was 100 mg per day. Hell there is no wonder she couldn't tolerate
it. It makes you wonder about some of these Doctors? At least it makes me
wonder. My Doctor told me if I was doing well handling the medicine and
thought I could move up faster than she had laid out, it was my choice,
however she did warn me about the possibilities of going to fast. Right now
my plans are to stay on track with her plans.

Even where I am today I still do not drive. Like I said I had to hire a
driver which is a great expense on me, but at least I can do it without
having to worry about wrecking and injuring another person. That isn't to
say I am rich or anything, I just have a business where I use an employee as
a driver as well as a helper. It is a drain on the business but it was
either that or close the business, so I opted for the way I am going.

Life is good even though the seizures have not stopped 100% yet. I am still
hopeful that one day I will be able to say I am seizure free. That is my
ultimate goal and I am hoping that Topamax will help me get there. When I
was having the seizures on a very frequent basis, I now realize that I was a
bit depressed as well. But now that these have gone to a couple times per
week, I am no longer depressed and I feel better over all.

I could go on and on, but I think you get the idea. I also hope others that
are new here may read this and realize that there may be help for you out
there. Just don't give up like I almost did, but we won't talk about that.

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