Hi Everyone!

[kittie-mom]

Hello! Nice to be here among others who know what it's like living with epilepsy. I had my first seizure (tonic clonic) at 13 & continued having them off & on until I was 21, when the doctor put me on Dilantin. I'm now 41 & am still taking Dilantin. I also have complex partial seizures. I have been seizure free for many years and the only real side effect I have is a very slight puffiness of my gums (nothing noticeable). I had a bone density scan a few weeks ago & was diagnosed with osteopenia in my right hip. Spine is actually good & left hip shows only slight bone loss. My GP had been prescribing the Dilantin for me since my seizures are so well controlled. However, he referred me to a neurologist due to concerns over the long-term use of Dilantin. I saw the neurologist today & he told me what I pretty much already knew: that this wouldn't be an easy decision because the Dilantin works so well for me. He is obviously concerned (as am I) that another drug wouldn't control my seizures or that the side effects would be so bad that I couldn't tolerate the drug. We also discussed the continuing bone loss if I stay on the Dilantin. He is sending me to a rheumatologist regarding the osteopenia to see if he believes it to be serious enough to switch me to another med. Has anyone here dealt with the osteopenia on Dilantin? I know people switch meds successfully & that everyone is different. Any advice on other meds that could control both types of my seizures?

[Bernard]

Hi KM, welcome to the forum.

It seems to me that most long time users of Dilantin attempt migrating to Lamictal/Lamotrigine first when the need arises. I dread the day when my wife needs to make this move (she's also taking Dilantin and finally achieving some good control over her status seizures).

[Nakamova]

Hi kittie-mom --

I was well-controlled on Dilantin too, but my neurologist has the same worries about bone loss, especially because of a history of osteoporosis in my family, and wanted me to switch. I tried Zonegran first which did not work out. I'm now on Lamictal, no problems with seizure control, tolerable side effects (although more than on the Dilantin).

I've heard that bone density scans are imperfect -- they are snapshots, and are not neccessarily accurate predictors of the rate or scope of future bone loss. Perhaps you could wait and have another scan done in 6 months?

[PhylisFeinerJohnson]

Yup, research concurs that Dilantin is associated with significant bone loss.

But Dilantin isn’t the only culprit. Women who took other anti-seizure drugs regularly — mostly Phenobarbital, Mysoline, Tegretol or Carbatrol – are at risk. However, the rate of bone loss was almost two times greater per year for those who took Dilantin.

One of the reasons for the lower bone density is that these drugs interfere with the absorption or metabolism of Calcium and Vitamin D, both considered natural bone strengtheners. So any person taking anti-seizure drugs — whether male or female — should get at least 1,200 MG of Calcium per day and at least 1,200 IU of Vitamin D a day.

Personally, I hated Dilantin. It gave me galloping gum rot and my hair fell out. I'm now a much happier camper on Lamictal and Klonopin.

Hope your meds are resolved soon...