Congenital enzyme deficiency

[jyearta]

I have been on dilantin for many years. I having congenital (I think this is what my dr. called it.)
He reduced my dilantin.

I have read where several of you are on dilantin or phenb.
Both of these medic. can cause this.

Has anyone had any dealings with this? Are you taking a supplement that does not interfer w/ seizure medic.

I have just started having this problem, and I am talking to my Dr.

But I would like to know if a PERSON has any dealings with this.

Any input would be appreciated.

[Meetz1064]

on the combination of the 2 of those drugs for 18, almost 19 years. Then I had a bad reaction, and had to be taken off of them. Over the years, I've still used Dilantin, for a total of 35 years or so, but so far as I'm aware, I don't have the problem that you're speaking of....

[jyearta]

thanks for the reply.

I was on both dila. and phenb. for about 32 years.

Then Dr. tried me on 6 or more diff. medic. I could not tolerate the side effects.

I am now taking Dila. and klonopin.

Being on dilantin for so long it has caused B-12 deficiency.

I'm been getting the shots - again I am sensitive to those too.

What I thought was a drop in the B-12 - ALL of sudden would become shakee, needing assist. along w/ other symptoms

As it turns out (New DR.) this, is causes from the dilantin, my level is to high. He has reduce dil. - just stated last night.
BIG difference today - very little shakness, able to write.

ANYWAY, I seem to ramble on.

Thanks

[Reece]

I was also on Dilantin for about 15 years. This caused a B-12 deficiency issue for me too.

Had injections for a while but now I just use the sublingual B-12 along with my multivitimin.

Dropped the Dilantin too. Went to Depakote.

[jyearta]

I want to change medic. but I am scared to.

I have been on severl other medic. with horrible side effects from them.

Being on dilantin and klonopin along b-12
I don't have the insomnia, and sever depression I have when i was on the others.

I guess i chosing the side effects I can live with the best.

But I might have to come off dilantin - can tolerate the B-12 shots.

and having such fatigue, i'm beginning to think, it's not worth it.

I just don't know.

[Reece]

I am always afraid to make any changes to my meds. I am in the process of changing doctors right now.

He was making too many changes to my meds and recommended I even stop taking one of them immedietly; all at once. Even I know you don't do that.

I know the Dilantin was bad for me so I am glad to be rid of that one.

See your doctor. Ask about the sublingual B-12. You can get them in the vitamin section at Wal-Mart. That might help with the fatigue.

[jyearta]

thank you for your input.

I have tried the B-12 sublig. tablets, for some reason my body didn't absorb, the went to shots. The shots sent me into a rage that I can not cantrol. It gets really bad.

This new Neur. said for me to take 2 droppers a day of B-12 liquid, then take the shot in smaller dose every week.

He said I have going from valleys to pikes, with my medic.
He said he wants go get all med. on an even basic.

I have to wait and see - just saw this new Neur. last Thur.

I'm glad for you that you were able to find a diff. medic. that works for you.

I have been on the internet researching diff. medic.

I know that everyone reacts diff. to medic. and that I will only find out by trying another medic.