Dilantin or Tegretol - Epilepsy Message Board

Sherri5186 · 12-30-2008, 04:44 PM

Just wondering if anyone has ever been on dilantin at one point
and then changed to tegretol? If so which medicine seemed to help
the best?When I was much younger in my teens I was on dilantin
and my seizures were less frequent anfd less severe,then at age
20 when I got my married my doctor changed me to tegretol because
he said,just in case I got pregnant tegretol was safer for the baby,
which I never had children anyway,it seemed like my seizures started
to get a little worse(not much)and as the years have went by(I am now
46)my seizures got to be more frequent and worse.Just thinking since
it has been sooooo many years since I was on dilantin talking to my dr.
about changing me back to dialntin just to see.
Any replys will be much appreciated.

Mediocrates · 12-30-2008, 07:00 PM

Sherri,

I switched from generic Dilantin to Carbatrol, which is Carbamazepine and a time-release version of Tegretol.

Carbatrol is better for me overall. Dilantin controlled my seizures completely; I still have a few per year on Carbatrol. But I find the side effects of Carbatrol are much less severe than Dilantin's. It's been a few years since I started Carbatrol and I have no plans to change, at least not yet.

If you find that Dilantin works better for you, of course, I would go back to it if I were you. Also, there are many newer drugs on the market now than when you started on Tegretol. You could read about them and pick your favorites before you see your doctor next time.

Travis from MN · 12-30-2008, 09:12 PM

I was on a combo of the two for many years. Never was I on Dilantin only. Being they can't (I don't think they can anyway) give Teg by IV when our levels are low, I was commonly given mega doses of Dilantin when the ambulance hauled me in.

Many times that was Dilantin, once it was a massive dose of phenobarbital (600mg and I was on 15mg at the time!)

Would I rate one over the other? I've been on Teg since 81. I have no experience on the NEW (current) formulation of Dilantin. In the past it was not as good WITH MY BODY compared to Teg.

That is the other part to consider, based on your past experiences with the medication, if you have been on it, how well it worked with your system. It seems people will often handle medications differently, some better than others. So YOUR experience (on both meds) would carry more weight in making the choice in my opinion. You know how they worked and how they made you feel.

--Travis

Sherri5186 · 12-31-2008, 06:03 AM

When I was on dilantin, I was also on phenobarbital.My side effects for neither have been so overwelming that I could not take it.Just a few months ago my doctor tried me on Carbatrol same amount of mg. as my tegretol and
Oh my God,I was losing my balance all the time when I would get up,luckily
there were other around to catch me,they had to take me off of it and
put me back on tegretol.The doctors even said,they never seen anyone
that couldn't handle tegretol but had problems with Carbatrol,that the chance
of that was maybe 1 in 5000,well that was me!
I have to do something,they increased my tegretol by 100mg. a day and
still no improvements.I even just went thru surgery, they removed part of my
left temporal lobe,and all of my left hippocampus,which is much harder to correct than the right side,that is why I am still having seizures.
Thanks for replying,I will talk to my doctor about this when I go for my appt.
the end of January.Again thanks,Sherri

caliwandxb · 06-27-2011, 04:09 PM

Any comparison on these drugs on your personal experiences please? Thanks!