Epilepsy Talk

Anti-Epilepsy Drugs and Osteoporosis – It’s Not Just a Women’s Disease | October 22, 2017

A research team consisting of epilepsy specialists and epidemiologists (persons who study the causes and control of diseases) reports on a study that answered an important but simple question:

Do anti-seizure drugs cause reductions in bone density?

Why ask this question?

Most doctors and patients agree that controlling seizures is very important — possibly the most important consideration — but other issues, such as long-term side effects of a medication, may affect quality of life.

If a drug reduces bone density, bones will become more fragile, and eventually this could result in fractures that may have a major effect on health and quality of life.

The main result of the study was whether men and women taking AEDs were more likely to have reduced bone density than those who were not taking this group of medications.

(Bone density is determined by a balance of bone reabsorption  and bone formation.)

In particular, Dilantin, was associated with significant bone loss.

And interestingly, Dilantin is the most prescribed AED by general physicians in the U.S. but less so among epilepsy doctors, because of its side-effects.

But Dilantin isn’t the only culprit.  Men and 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.

This severe bone density loss can lead to Osteoporosis (brittle bone disease) and Osteomalacia (softening of the bones) Importantly, regular users of anti-seizure drugs have an estimated 29% increase in hip fractures over 5 years.

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.

This includes young children who are also highly vulnerable.

Also to be considered is 500 MG of Magnesium to help absorb the Calcium and Vitamin D.  Plus, Vitamin K plays a role by helping calcium bind to bone tissue and reduce incidence of fractures.

However, it’s best to get your Vitamin K from leafy, green vegetables. If your diet is deficient, 2 MG is recommended as a starting dose.

( If you want to increase the amount, see your doctor first, because Vitamin K is not recommended for those on blood thinners or by pregnant or nursing mothers.)

Obviously, doctors should inform patients that Osteoporosis and Osteomalacia are possible side-effects of taking some AEDs. They should also consider what preventative measures can be taken. 

But whether your doctor tells you or not, at age 50, everyone should get a baseline bone density (DEXA) scan.  If the results are normal, then follow-ups are recommended every three to five years.

At this point, the safety of prescription drug therapy for bone loss is in limbo. 

The Food and Drug Administration is conducting a safety review of the following bone-building drugs: Fosamax, Boniva and Actonel (also known as known as bisphosphonates) to see if they increase the risk of fractures in the bone — just below the hip-joint — in patients who’ve been on these drugs for several years.

(Fosamax has also been associated with a rare but severe bone disease called Osteonecrosis of the jaw. Some dentists won’t even treat patients on Fosamax!)

But you can play it safe and get all the benefits without the risks.

Because there are healthy supplements available out there to provide the right combination of nutrients you need to promote healthy bones.  (One-stop shopping?)

The easiest one to find is “Bone Up” by Jarrow. 

And personally, I’d rather go the vitamin route than play with the fire of prescription drugs.  After all, we take enough meds as it is…

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  1. Interesting and well explained. Have taken these meds, and always wondered why Drs wanted to take bone density tests. I have been taking calcium for years.


    Comment by Karen — October 22, 2017 @ 4:50 PM

  2. Nice article.

    I have been on Dilantin for over 30 years and have osteoporosis and osteomalacia. This lead to severe back problems including scoliosis. I have taken high dose vitamin D Ca and Mg for ten years. They helped a little. Exercise is very important, I do about 100 miles a month on a recumbent trike. Weight bearing exercises are important also, I use high repetitions with light hand held weights and ankle weights. I have had a few senior falls in the house but luckily did not break anything. Ah! the joys of Dilantin (phenytoin.)!


    Comment by Michael H — October 22, 2017 @ 6:41 PM

  3. Does anyone have R.A as an after effect of their epilepsy drug?


    Comment by Janice Barnes — October 23, 2017 @ 2:55 AM

  4. I’m hoping that Keppra is not a culprit for this…If not its yet another supplement for me !!!!


    Comment by Michelle — October 23, 2017 @ 4:37 AM

    • Dilantin is the main culprit. Also, men and women who took other anti-seizure drugs regularly — mostly Phenobarbital, Mysoline, Tegretol, or Carbatrol are at risk.

      So, it looks like you’re safe with Keppra.


      Comment by Phylis Feiner Johnson — October 23, 2017 @ 8:59 AM

  5. Yes they do without a doubt. After nearly thirty years on epilepsy meds my teeth were decaying at a ridiculous rate. I had no idea the drugs were responsible at the time and went to see a dentist in India to get them all replaced. The dentist said I had the bone density of a 70 year old (I was in my mid forties) so I spent a year taking high doses of calcium before I went back to him. Once my teeth were done my gums were bleeding so I weaned myself off the medication. Now I have not taken medication for nearly a year and my seizures are under much better control using a herb called Moringa and vitamin D. I use CBD oil too but doubt that makes a lot of difference. Since coming off epilepsy meds my life has improves a thousand fold, at first it felt like I had super powers. Bone density is just one of countless side effects of epilepsy medication that are far worse than the seizures. I didn’t stop taking medication until I discovered I could stop my seizures by feigning excitement when I feel an aura. I still do this, it stops the seizures dead. I have generalised epilepsy, it’s inoperable and can effect me in a variety of ways. Fortunately now I am off medication completely I control it and it no longer controls me. I honestly believe that anyone can master their own epilepsy, it had taken me years and I’m not there yet. In the last year I had about ten seizures that I lost control of, on medication I had about eighty a year. What an improvement! Next year will be better still and no side effects whatsoever.


    Comment by chaplinslivingstatue — October 23, 2017 @ 8:36 AM

    • Wow. Congratulations to you for being so proactive! And so successful.

      Moringa is a new one for me. What is it and where do you get it?

      Liked by 1 person

      Comment by Phylis Feiner Johnson — October 23, 2017 @ 9:04 AM

      • Google it if you haven’t already. I get mine on Amazon. I shopped around until I found what I thought was the best deal. Coincidently it comes from India so I will be making inquiries next time I’m out there. Vitamin D boosts your immune system, I missed my vitamin D out yesterday and really noticed the difference, my myoclonic jerks came back. Moringa contains 20 amino acids, the building blocks of proteins . Amino acids have been recently found to help stop seizures. Moringa is just a tree, it’s leaf powder is great for lots of things, it contains 18 anti oxidants, minerals, and is a natural multi vitamin too. It is going to play a big role in treating epilepsy once everyone catches on to how effective it is. I take 1000mg a day, without it I would be having seizures constantly.


        Comment by chaplinslivingstatue — October 23, 2017 @ 10:33 AM

      • Thanks so very much!


        Comment by Phylis Feiner Johnson — October 23, 2017 @ 10:36 AM

  6. You’re welcome. Stay in touch. I kept a log of my progress coming off epilepsy drugs at facebook.com/beatingepilepsy. It’s there for anyone to use as inspiration for their own journey.


    Comment by chaplinslivingstatue — October 23, 2017 @ 12:43 PM

  7. I hope it will help everyone loads. My name is Ant btw. Everything is there on the facebook page. My email address is antestatik@gmail.com. Have a great week!


    Comment by chaplinslivingstatue — October 23, 2017 @ 1:04 PM

  8. I have been taking Calcium Lactate by Standard Process from my Functional Medicine aunt for years, mostly because I have taken Prednisone(and other steroids) too for years, not just AEDs that caused bone loss. Though I am sure the AED’s contributed over the years too. I used to have a kidney disorder when I was younger that made me take that daily and I have been using it in emergency for asthma attacks lately. I don’t like using my Albuterol inhaler either.


    Comment by trekkie80sgirl — October 23, 2017 @ 11:28 PM

    • I got raging kidney infections when I was on steroids. Do you think the Calcium Lactate would have helped?


      Comment by Phylis Feiner Johnson — October 24, 2017 @ 8:55 AM

  9. Good old dilantin, pure evil in capsule form. That was my first seizure drug back in the early 90’s.Extreme confusion and depression, extreme memory problems, but I guess the worst part was a really, really bad case of the STOOPIDS. I never really made the connection with the Osteoporosis and back issues that came later, but that may very well be a part of it.


    Comment by edbrad — October 24, 2017 @ 10:08 PM

    • I had the stoopids, too. Along with galloping gum rot and the loss of my beautiful long hair.

      If you want to hear about it: Here’s what others have experienced:

      Dilantin – What People Are Saying…



      Comment by Phylis Feiner Johnson — October 24, 2017 @ 10:45 PM

      • I had all those on all the other epilepsy drugs they had me on over the years. Its time to find a treatment for epilepsy that really works. I’m doing great now on the high doses of amino acids in Moringa. I had six seizures a couple of days ago and turned them all off. Its a huge improvement on when i was medicated. We can beat this.


        Comment by chaplinslivingstatue — November 3, 2017 @ 12:03 PM

      • FANTASTIC! Which form of Moringa do you take?

        For other readers: MORINGA BENEFITS – WHAT IS MORINGA?



        Comment by Phylis Feiner Johnson — November 3, 2017 @ 12:14 PM

      • I take moringa in 500mg pill form twice a day. When I originally came off medication I had no idea the moringa was helping control my seizures. If I didn’t take it I would feel like I had electric currents running through me all the time as well as the assorted seizures and myoclonic jerks. Vitamin D helps too and I’m not too sure about CBD oil but use it anyway. Completely big pharma med free and loving life now. Seizures clearing up too (I don’t even mind if someone calls them fits).


        Comment by chaplinslivingstatue — November 3, 2017 @ 12:26 PM

      • Thanks!!! Glad you are doing so well.

        Your feedback is super.


        Comment by Phylis Feiner Johnson — November 3, 2017 @ 12:29 PM

      • I will keep you informed. It is great to be taken seriously. I put a lot of effort into this cos I was certain I was right about it. I urge everyone who gets an aura to get excited instead of fearful. It was a life changing moment for me when I first did it and it worked for my friend Dan in Puerto Rico too. She got through the hurricane since then too. Dan doesn’t take medication either and has been free of uncontrolled seizures for a year. Gregory lives in Albuquerque, doesnt take meds any more and has been free of them for three years. He introduced me to Dan. There are big changes coming.


        Comment by chaplinslivingstatue — November 3, 2017 @ 12:40 PM

      • Truth that there’s life beyond meds!

        I hope you’re right.


        Comment by Phylis Feiner Johnson — November 3, 2017 @ 4:36 PM

  10. I have been asking for med checks for my son for nearly 2 years as his seizures are way out of control .he hasn’t even been sent spots to have checkes from epilepsy nurse or neuroscience . He takes phenobarbital.. phenytoin… Clobazam …and still the seizures came …..a few weeks ago he we found him passed away sat up in the kitchen .we are all devastated with the sad loss of a fantastic young man. And feel that he has been let so badly down by the NHS service in Scotland ….we know most deaths in SUDEP are preventable and feel his was totally this .thanks for reading .


    Comment by Valerie Wells — October 30, 2017 @ 12:20 PM

    • Oh Valerie, how horrid. Please accept my condolences. 😦


      Comment by Phylis Feiner Johnson — October 30, 2017 @ 1:56 PM

    • Sorry the above topic was meant to go in the epilepsy medication build up a resistance section sorry .


      Comment by Valerie Wells — October 30, 2017 @ 2:14 PM

  11. Thank you Phylis ..I am totally heart broken…and so angry as well…. such a waste of a beautiful life .


    Comment by Valerie Wells — October 30, 2017 @ 6:35 PM

    • Oh Valerie, I’m so sorry and heart-broken for you.

      I think I can try to understand you sorrow and your anger.

      Perhaps time can heal a bit.


      Comment by Phylis Feiner Johnson — October 30, 2017 @ 6:47 PM

  12. My name is Ann Lee, i was doing very great until one morning i woke up with painful joints all over couldn’t even move an inch, my mum called our family doctor for check-up and i was took to the hospital later did i found out that i was diagnosed with Rheumatoid Arthritis, i bought lots of medicine as told but nothing worked out a friend of mine told me to contact Standard Herbs Home for herbal remedy which a friend of his also contacted when he was diagnosed of Rheumatoid Arthritis and they really helped him, so i contacted Standard Herbs Home and i purchased the herbal remedy and after 4 months i went for check-up and i was cured from Rheumatoid Arthritis, God bless you Standard Herbs Home.


    Comment by Ann Lee (@AnnLee18243417) — November 7, 2017 @ 7:46 PM

    • That’s great. Which Standard Herbs Home product(s) did you use?

      Would you be willing to provide us with a link?


      Comment by Phylis Feiner Johnson — November 7, 2017 @ 8:29 PM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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