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annesmith

dilantin depletes calcium

Hi!

I just found this discussion board and I'm hoping to hear some feedback.  I am 42 and had my first seizure when I was 17.  I've been on dilantin ever since, with a brief trial (that was miserable) on tegratol, during pregnancy.  I am contemplating going off dilantin due to osteopenia in my hip and spine.  I've had it monitored for several years and despite taking supplements and doing weight bearing exercise, it is still progressing. Additionally, my mother has osteoperosis so the genetics are against me.  Therefore, the dilantin depleting the calcuim is really not helping the situation.  I'm really nervous about a switch.... anyone have any advice?

Thanks, in advance, for any help you may have to offer!

Anne

Comments

Re: dilantin depletes calcium

     hi anne...i was on 200mg of dilantin, for over 2 years,since 2nd sz, and just yesterday dropped it totally,after going to one pill a day for two weeks. i am also still on 1000mg of keppra (which is really what i want to get off of). my dentist says the dilantin is causing gum problems...i knew that would happen...mostly to men ,i think. ive only had 3 tcs, in a 4 month period,sept 06 to feb 07....so i dont think i been thru near as much as most folks here. i am a bit nervous getting off dilantin, i been driving againsince i could(3 monthes after last sz)...so ,i gotta watch out for that...hah...what can you do about that? keppra has probably stopped my brain from szing...but i believe it has helped me become a real mean,irritated person. however ...it could just be that i am angry because i had szs...and have to take pills that slow my brain down...so they say. cant imagine what ive said will help you at all...just yakkin my story...good luck...hope you get better responses!  david59

 

 

 

 

 

 

 

 

 

 

 

 

 

Re: dilantin depletes calcium

Hi David,

Thanks for your response and best wishes with getting off the dilantin and keppra. It's always good to hear that someone goes off the meds and remains seizure free! :)  My seizures are completely controlled when I'm on dilantin and anything else is unknown.  I don't like the unknown!!!  I'm glad you wrote about Keppra, as I know nothing about it.  I would not like to go on something that will alter my personality (not that it's wonderful~ but it's ME!!).  I'd want off it ,too, if I were you.  But.... utimately, you want those seizures to stay away, right?  Good luck David~ keep us posted.

Anne

Re: dilantin depletes calcium....espceially after 40 years usage

This is true I am a complete good example of dilantin ruining your bones I was osteopoenic but now I have osteoporosis and I am in constant back pain it feels like my back might break my doctor gave me pain meds

but I want now an mri of my back

 It was the hardest thing I did was getting off of the dilantin I knew how to use it but in my 38 year of it

it was hopelessly not working and not only were my bones ruined but my teeth I lost all of my uppers

and had a partial now I finally got implants and love them

after having braces! uggg!

It has been very rough for me trying to get use to the new AEDs and all what goes on

years ago we just didnt have all of these choices of meds

I just do what my neuro says

Re: dilantin depletes calcium....espceially after 40 years usage

Grrrr... reading your experience makes me mad! Why didn't they tell us about the calcium depletion, from the start?  The only excuse I can think of is that this is a long-term effect, of which they are just learning about now (?) .  They should put us all on calcium and vitamin D.  I'm sorry that you are going through the pain and misery of osteoperosis.  Unfortunately, it seems that all of the meds have serious side effects, when used long-term.  On the other hand, I thank God that my seizures are under control....... I will deal with the side effects as they come. 

 

I recently read that dilantin also causes the brain to shrink.  This shows up as a loss of balance... can be really bad for someone with osteoperosis.  Please be careful!

Best wishes and thank you for your response.

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