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Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Once I started it, I could not come off of it. But Dilantin & Phenobarbital were the only drugs available back then.

July 21
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A MyEpilepsyTeam Member

Hello

July 21
A MyEpilepsyTeam Member

Hello Sweetnsimple,

My sister is coming over this morning to help with a computer issue and I have to get my bedroom cleaned out before she comes because that’s where my laptop & printer located and my stupid body woke me up 4:40 am. So I am to get dressed to try to get things put away. And then eat cereal & yogurt.

July 22
A MyEpilepsyTeam Member

It was addicting for me. I on it from the age of 2 thru my early adulthood. My Dr. tried taking me off it in my teens . But I was put back on it.

It was until I turned 18 or 19 yrs of age when I finally was taken off of Phenobarbital.

July 21
A MyEpilepsyTeam Member

My balance is not great for walking. I’ve fallen three times in six weeks. My primary care doctor is trying to get physical therapy for me. I do have a recumbent bike in my lanai. But do not know if that is as good as walking.

July 21
MyEpilepsyTeam

That's a really valid concern, and it's great that you're asking about it. Yes, phenobarbital is actually one of the antiepileptic drugs (AEDs) known to affect bone health, particularly with long-term use.

It falls into a category called "enzyme-inducing" AEDs, which can interfere with how the body processes vitamin D. When Show Full Answer

That's a really valid concern, and it's great that you're asking about it. Yes, phenobarbital is actually one of the antiepileptic drugs (AEDs) known to affect bone health, particularly with long-term use.

It falls into a category called "enzyme-inducing" AEDs, which can interfere with how the body processes vitamin D. When vitamin D levels drop, calcium absorption also decreases — and both are essential for keeping bones strong. Over time, this can contribute to bone loss. People with epilepsy are already two to six times more likely to experience bone fractures compared to the general public, so this is something worth monitoring closely.

Here are some steps worth discussing with your neurology team:

- Bone density screening to get a baseline picture of your bone health
- Vitamin D and calcium supplementation to help offset the effects of the medication
- Weight-bearing exercises like walking or light strength training to help preserve bone density
- Sun exposure when safely possible, as it naturally boosts vitamin D levels

Since coming off phenobarbital isn't an option for you, focusing on protecting your bones through these supportive measures becomes even more important. Your neurologist or a bone health specialist can help tailor a plan that works alongside your current treatment.

July 21

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