*sigh*

All the fun begins again ... while true, Dilantin which
I can no longer use, "old faithful" which have been
so good to me; now wrecked havoc with my teeth,
chemistry & hematology, etc - had to be put aside
permanently.

In spite of my protest, I wanted to keep Dilantin as
"the spare tire in the trunk" in case some new anti-
epileptic drug they approached to failed; I would have
something to fall back to ---> but they said "NO!"

A risky move was made, having nothing to fall back
to if such move collapsed (failed); fortunately since
2006, Zonegran and Clonazepam (generic for Klonopin)
have worked wonderfully.

NOW they want to put Zonegran as the "spare tire
in the trunk" after having introduced me to Lamictal
and having been on it for awhile and my body is handling
it well.

Here we go again ... Hasta la bye bye to Zonegran and
Hello Lamictal -- the titration of decreasing Zonegran
and increasing Lamictal until Zonegran is gone and
Lamictal will continue to increase; Nonetheless, the
Clonazepam and Folic Acid would remain unchanged.

This whole titration now begins Sunday morning!



1) I am happy to know that my body is tolerating
Lamictal very well ... butttttttttttttt .... I am not
so sure about letting go of Zonegran

2) I know I need a anti-epileptic drug to fall back on
since I have "No spare tire in the trunk"; so it's nice
to know I'll have something to fall back on ....


Butttttttttt ........ I hate this! I've lost count of how
many titration of medication(s) changes throughout
the decades I've been through.

Should I imply what Jackie Gleason had said on the
Honeymooner's show? "TO THE MOON ALICE, TO
THE MOON!" That might be where I am, somewhere
along the line ... *laughing*



Thanks for letting me unleash here ...

Hi Sharon,
I wish you the best of luck with all the AED changes I've been on every AED you've mentioned. I found that konopin, and zonegran weren't strong enough for me. I tried lamictal and I broke out with a rash from the drug after being on it for only 4 days. I took Dilantin yrs. ago when I was a kid and first started having sz. I take 1 mg. of Folic acid a day now but the main reason I was put on that drug was to stop anemia. My advice to you is to tell your neuro to stop playing around with the AED's and stay on the AED's that help you the most. Just like you I've been on med after med and it wasn't until I had a DNA blood test that they found out I was drug resistant. As far as what to tell the neuro. I would go by what Jackie Gleason used to say on the "Honeymooners" One of these days power right in the kisser! Say that to the neuro and see what happens. Take care and I wish you the best of luck. May God Bless You!

Sue

Quote:

Originally Posted by Porkette I would go by what Jackie Gleason used to say on the "Honeymooners" One of these days power right in the kisser! Sue

Sue: I think you've just spoken for everyone
who has been on tirades of AED cocktails!
And they are going to love you for that
remark or is that the post?



I admit, I've lost count of how many
cocktails I've been on ...

Is this a good time to "Sing" .....
99 Cocktails on the wall?



Moreover, I had been on Zonegran
and Clonazepam for a very long time,
so sorry it never worked out for you.
Lamictal was only tossed it to see how
it would work on me; and it worked.

----------

So far ... my body is starting to go into
the "Honeymoon" phase of getting
adjusted to this change, and we will
see how it goes after this month until
I see the Neurologist on March 17th;
that is ---> if I survive.

Hmmm ....

Should "we" be the "Real Survivors" and
be awarded free T-Shirts of such? Just a
thought there - considering the "torture"
chambers we've gone through ...

Hi Sharon,
I'm glad to hear that the lamictal is working for you along with your other AED's. As far as cocktails I have been on at least 12 if not more. I found the more AED's I took the more sz. I had. I used to take 5 different AEDs all at the same time Dilantin, zarontin, phenobarbital, tegretol, and mysoline. Take my word I was out of it then all I wanted to do was sleep. I was just a kid then and I went to school for only half the day I was so tired. After my surgery in 1994 I went down to two AEDs and that's it. I also watch what I eat because to much starch food and carbs. as well as anything with nutra sweet trigger sz. for me. I wish you the best of luck on the lamictal. Take care and May God Bless You!

Sue

LOL! Yes !!

Thankfully, the most AED's I've taken per day is two. But I have tried many! Many medications - many variations on dosages, mix, times, etc. We are survivors!


Shez

Southie,

How many years were you on dialantin before they took you off of it? My husband has been on it for most of his life. I think I would be terrified if they took him off. Like you said it has been old faithful!

Karen

Quote:

Originally Posted by KAREN1202 Southie, How many years were you on dialantin before they took you off of it? My husband has been on it for most of his life. I think I would be terrified if they took him off. Like you said it has been old faithful! Karen

Hi Karen;

I had been on Dilantin / Phenytoin since 1980s;
however - it was the titration (dosage) levels that
I was on which exceeded the recommendations
(which ranged from 200 mg B.I.D. to 300 mg T.I.D,
and mostly at 300 mg T.I.D.) - which at the blood
level range (normally required) would have shot
through the roof in the normal recommendation
levels ---> the point was this: IT WAS WORKING
was the main issue right there, not so much as
what and where the blood levels were reading up.

However, it was also a costly pay-back after so
many years of being on it at such a high titration
of being on it (in spite of their attempts of trying
various other medications, which unfortunately,
always ended up being back on Dilantin - the
"old faithful") -- as it is implied on the original
post...

If I had my way, I would go back to Dilantin,
I do like Zonegran very much - but if I were to
compare between Zonegran and Dilantin personally
(not as a Medical Doctor) --> I pick Dilantin. However,
they've changed Dilantin / Phenytoin; so I don't know
how these new Kapseals are or their impact/effect.

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

As for Lamictal ---> that's gone to the "Hasta La
Bye Bye" ---> into the A E D Allergy list.



I have no idea what my Neurologist has in store for
what lies ahead; he had been so busy that my appts.
had been pushed back. So I am somewhat a little
nervous as what's next?