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Titration up and Titration down
*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! :eek: 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* :rolleyes: 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 |
Sue - you've just hit the nail on the head ...
Quote:
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? :D 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? :rolleyes: 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 ... :mfr_wha: :eek: :Crazy 2: |
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 :I-Agree:!!
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! :Good-Luck: 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:
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? :confused: |
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