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Any Long Term Dilantin Users Out There?

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Old 10-13-2005, 08:55 PM   #1
Join Date: May 2005
Posts: 3
Sicilianna HB User
Any Long Term Dilantin Users Out There?

I am looking for other people with epilepsy who have been on Dilantin for very long term periods of time.
I have taken 400 mgs of Dilantin daily since age 12. I am now 51.
Last year, my brother emailed an article to me that in essence said that women who were on the older classes of anticonvulsants for extended periods of time, were 50% more likely to develop osteoperosis than the general population. 50% !
I have not yet entered menopause, yet at last year's OB-GYN check up, I was told that I had shrunk and inch since the year before. I had them remeasure me 3 times...but no matter of tall I stood, I still measured in at 5'2". A bone scan shows no osteo in my pelvic region, so, I'm pleased about that.
I do have pheripheral neuropathy in the major trunks of both legs as a result of Dilantin use over the years. It was first diagnosed 7 yars ago. It's moving up my legs. Sometimes they feel like tree trunks. So heavy. I feel that I am "slowing down". Bending , stretching , moving...can be very difficult. However, a second grade teacher must be "on the go" and I work through it. Since weight lifting fights the onset of osteo, I've become a fixture at the local gym. I look ridiculous, but it's good for me.
Changing meds is not an option. I am perfectly controlled on Dilantin. My Neurologist and I once had the following conversation:

Doc of 23 years: "You're my only patient still on Dilantin."
Me: "Why is that?"
Doc of 23 years: "Too many side effects."
Doc of 23 years: "If it ain't broke, don't fix it."

And it's true. As long as I take my meds, I'm perfectly controlled by Dilantin....but I would like to connect with others who are experiencing such long term side effects from this medication, or other such old class of anticonvulsant.
Sorry to have gone on for so long.

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Old 10-15-2005, 07:12 AM   #2
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Join Date: Sep 2005
Posts: 25
frickin HB User
Re: Any Long Term Dilantin Users Out There?

I had been on dilantin for about 13 years until I got my first bone scan. It came back osteopenia. I wasn't gonna wait until a hip broke. I got off it & am on Evista for the bones.

Old 10-17-2005, 03:44 AM   #3
Join Date: Jan 2005
Posts: 99
EthanF HB User
Re: Any Long Term Dilantin Users Out There?

I was on dilanton as a kid. I heard from my parents that it had some bad side effects in my case, but I was too young to remember. Sorry I can't help you but I want to wish you the best.


Old 10-20-2005, 09:00 PM   #4
Join Date: Apr 2005
Location: Wisconsin
Posts: 96
jerrytom HB User
Re: Any Long Term Dilantin Users Out There?

I've been taking Dilantin about 15 years. I don't think I've had any real bad side effects from it at all. My current epileptologist wanted to take me off dilantin and try Keppra but taking dilantin, keppra, lamictal and zonegran and I'm still not controled so I'm taking all of it. I had broken bones but not from dilantin. My ex set up obstical courses around the bed so I would fall and break things. I broke my hip in the ER one night. I lost my leg in 99 and if I have a seizure at night and try to get up in the post ictal state, I fall. If I were you I would get the tests for bone density and find out how your doing. Good luck and I hope you can stay controled

Old 10-21-2005, 04:27 AM   #5
Join Date: May 2005
Posts: 3
Sicilianna HB User
Re: Any Long Term Dilantin Users Out There?

My Thanks to all for taking the time to respond. Truly.
JerryTom, your advice is good. I should be tested once more for osteo.
Have a good weekend all.

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