Dilantin Free first time in 46yrs.

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Mr. Pibb

Mr. Pibb

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Well it feels good to be off the dilantin, now the other meds just need to work. Doing the vimpat without side effects for the most part.
So I was looking for things to get better. I hope it all works out once I get past the dilantin not being in my body and the vimpat levels correct as of now it's 200mg bid. Now for the part thats not so good since December 20th, 25th and then last night yep three seizures in what I think is three to many. Hope I stop having them really don't want to stop with the new drug.
 
Congrats on getting off of the Dilantin! Sorry to hear about your seizures. I hope as the Vimpat dose takes effect that they will die down soon :)
 
Mr. Pibb, First that's great that you've "kicked the Dilantin habit". Hopefully your Vimpat will kick in and stop the seizures.
How long did it take for you to come off Dilantin?
I've been on Dilantin 42 years-400mg one day, 500 mg next day. (combined first w/Phenobarbitol then changed to Depakote) This past May 2012, my current neuro ordered me off Depakote, and wanted to wean me off Dilantin due to long term use side effects.. He started me on generic Keppra. I think I got down to 200 mg a day when I had the worst seizures I can remember having-so my doc stopped trying to take me off Dilantin. I'm now taking 400 mg of Dilantin a day, plus 1000mg bid of Keppra.
Sorry this is so long, but because of memory loss, possible bone marrow loss, & bad gums I'm very much still interested in dropping the D.
In your opinion do you think it's worth it???
 
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Pibb,

I was wondering why you got off Dilantin after all these years? Was it not working anymore, were you experiencing effects?

I took it for 17 years, then went to Neurontin alone, and now take Keppra (been on Keppra alone for the past few years). I haven't felt as good as I did when I took Dilantin. I now lack energy, sexual interest and libido is down, and don't always feel mentally sharp.

I am thinking of going back to Dilantin as a result of all this. Curious to hear what you feel like after ending Dilantin.
 
Hope the Vimpat treats you well, and sends the seizures packing!
 
Well the number one reason to come off it was not working well as of late still not having seizures but blood levels were like a rollercoaster, with each dip in blood levels the next time the would be in the other range and we would increase the dilantin levels to the point of 500mg daily.

Started coming off the dilantin Nov. 1st 2012 last day taking it last Sunday night

Jerry
 
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How can Mr. Pibb even try to compare himself to Dr. Pepper. The dude didn't even get his degree....
 
The way I was told of how Dilantin works ( I trying my best to explain)
When taking lets say 100mg of Dilantin, when that dose enters your system it could be 75 present or less of the dosage that goes into your system, then next time you take 100mg, your body might absore 135 mg.

Dilantin is the only meds. that does this.

I hopeI haven't confused anyone. My levels have been all over the place, and this it how it was explained to me

Dr. have tried me on all the meds. out there, but either the seizures are the side effects I have not been able to tolerate any of them.

my Neur. NOW wants to try me on something else, I gave my list of all the meds. that I've tried, I refuse to try anything else.

Hope you have success in changing meds.
 
Dignan said:
Pibb,

I was wondering why you got off Dilantin after all these years? Was it not working anymore, were you experiencing effects?

I took it for 17 years, then went to Neurontin alone, and now take Keppra (been on Keppra alone for the past few years). I haven't felt as good as I did when I took Dilantin. I now lack energy, sexual interest and libido is down, and don't always feel mentally sharp.

I am thinking of going back to Dilantin as a result of all this. Curious to hear what you feel like after ending Dilantin.
Click to expand...

Why would you want to quit the dilantin after so many years if it was working?
If it's not broke ~ why fix it.
It seems that you are having more side effects now.
Didn't your Dr. explain to you the risks of "changing meds."after long term use?
You could risk having more seizures and/or auras and generally feel like crap.

By law you'll have to surrender your drivers license (if you have one)
I'd be interested to hear your response.

Randy (34 years with EP)
 
At the time, I actually took Dilantin and a small dose of Neurontin too.

My doc wanted me off Dilantin due to slight bone loss (and by slight I mean osteopenia in one area, with other areas still normal) and the general consensus that long term use of Dilantin is not advisable (although, I doubt long term use of any anti-seizure drug is great for your body). He was my doc, so I listened.. and no, he didn't mention that I'd feel like crap (which I did for about 6 months) following the change off of Dilantin.

I knew there was seizure risk when switching, but that is with any drug switch. Ive been on Keppra now for 2 years, and haven't had any seizures, but like I said, I don't feel all there sometimes, feel physically weak, and have no sex drive.

When I brought these things to the docs attention, he wasn't sure what the culprit would be, as he noted after this long, I shouldn't be feeling any after effects from Dilantin. He even suggested going back to the Dilantin, just to see if everything went back normal, so we could say definitively if what I complain about was due to keppra or not (although it took him along time to agree with this approach).

I've been on the fence for some time now, as whether to switch back, both because of bone loss and because I've had other things going on in my life, and a drug switch and all that entails, hasn't been very convenient the last several months. But, it would be nice to feel completely myself again.
 
Yes I think it is worth it I'm fiftytwo and still kicking so why live with a sub par experience. Second if we don't try these meds we slow down the studies of a drug that might be great or not even close to working so we weed them out in the hopes that we find a drug that equals some of the older ones. With what we hope for to be higher thresholds and less side effects. Am I happy that I had the big S hell no I like my freedom and well I guess I lost it for three months bbut by then I could feel fantastic and wonder why I didn't do this earlier.
Jerry
 
Thanks, Mr. Pibb. You've made a good argument/statement supporting using newer meds & the need for studies of AEDs. You've also given me something to consider.
Are you on Vimpat alone?
 
jackier said:
Thanks, Mr. Pibb. You've made a good argument/statement supporting using newer meds & the need for studies of AEDs. You've also given me something to consider.
Are you on Vimpat alone?
Click to expand...

Many of the newer AEDs haven't been around long enough to have had a study done for it's long term effects and effectiveness whereas dilantin has been around since 1938 and has been proven to work and most side affects are well known so you know what to expect.

IMO It's better not to change meds (especially later in life) and risk another seizure(s) if you can put up with some minor side effects.

Randy
 
Cheski said:
How can Mr. Pibb even try to compare himself to Dr. Pepper. The dude didn't even get his degree....
Click to expand...

/slaps knee...falls out of chair LMFAO

Cheeky bastard. LOL


I was put on Dilantin beginning with my first seizure in 2001. At one point, I had a 5 year break and then another CT in Wal-Mart toy section put me right back on it. My new neuro wanted to put me on Keppra at my visit two weeks ago, because he was afraid of the bone density factor, however my scans came out excellent. He was also concerned about long term use. But in the past 4-5 years I have been diagnosed with several auto-immune disorders and the medication regime needed to treat them and my long list of drug allergies just doesn't make change possible.

Dilantin works for me as I've not had any seizures even though I might get "that feeling" of one impending. I am aware of the side effects, believe me, I research every new medication I am prescribed. I have a serious balance problem, is it the Dilantin? or the Lyrica? or CIPD? That is the $64,000 question

Jerry I wish you the best luck with your changes. I know how hard and how scary it can be.
 
I too take Dilantin and I had a bad balance problems, when I went on a diet a lost 40lbs.

I saw Neurs. no.628)9229----who finally listen to me and decreased my Dilantin.
 
Dilantin was good for the time i was on it but in the last year it was not doing it's job like it was in years past had it been doing its thing and I wasn't worry about the curve in my back osteo-perina I would have stayed on it My hopes are that between the 600mg of lyrica 300bid and the vimpat 200bid it will do the trick and I can back living life. one thing that I wonder is what it would be like on zero meds would I function faster better hand control that sort of thing.
Jerry
 
Birdbolmb ~ I have poor balance as well. It's from a combination of long term use of dilantin and age (which we can't help).

Mr. Pibb and Dignan ~ If you are worried about osteo-perina/osteoperosis, try adding a calcium/magnesim supplement.

Randy
 
I had a bone dist. test done, I've been on Dilantin for 40 years. My test showed. in the normal range for my age.

Sometimes I think the drug companies want Dr. to presc. the NEW meds. Like someone said before these NEW meds. they don't know what the long term use is going to do.

I had been on Dilantin for 32 years, When New Dr. wanted to change my meds. When I was at Emory, Dr. said that if a meds. is working for you, No Dr. should change meds, just because it's new.
 
I wish I had never changed from Dilantin. Haven't felt right since, and I'm scared that even if I go back, I may not function like I did before.

BTW, I already take a calcium supplement.
 
I went from Dilantin to Lamictal about 13 or 14 years ago because the Dilantin wasn't working as well and I was getting the gingival hyperplasia. I think that overall lamictal has been very good to me even though I still have lots of partials. I tried keppra and zonegran for very brief periods and felt horrible. I recently (3 months ago?) added trileptal to the lamictal and that seems to have reduced the partials with no particular side-effects. I'm only on 200/day of trileptal and 300 of lamictal. I had been taking 500 of lamictal and there was no decrease in sz frequency, but I was more tired.
All that said, you might talk to your neuro about trying another one. Lamictal has been around for a long enough time to have a pretty good basis of how people react to it.
Good luck, and keep us informed!
 
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