Epilepsy drugs can cause Osteoporosis... - Epilepsy Research UK

Epilepsy Research UK

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Epilepsy drugs can cause Osteoporosis - be warned. It can also be avoided by taking Vit D


5 years ago I was diagnosed with severe osteoporosis - and after a bit of research the ONLY reason I have osteoporosis is because after the menopause I was not prescribed Vit D. So for 10 years I took AEDs until I fell off a ladder and broke my wrist, and it was discovered I had OP. 5 years later I am neary out of the OP range ONLY because I take loads of Vit D.

6 Replies

did your GP suggest your taking Vit D or did you just decide to take it anyway, I'm at menopausal age and having side effects I think from AED as in my hair is really brittle and breaking, not sure if this is AED or menopause, and think my seizure's have started due to menopause, did you have more seizure's while you were going through the menopause?

AmyBadd in reply to bevA

Often seizures can be triggered by hormonal changes (my first period and first seizure were within a week of each other!) so I wouldn't be Surprised if menopause would have an effect on your epilepsy.

willyoung in reply to AmyBadd

Sorry ladies I can't help with menopausal issues, but when my hair started to fall out I had to demand my blood test results from my GP to discover low Ferritin. My GP said my Ferritin at 55 ug/L was OK as the levels are 22 - 275 ug/L. A retired haematologist friend told me that a recommended level should be in the top 25% of the range. I bought Ferrous Glutamate to bring my levels up to 210 and my hair has regrown. I've discovered that NICE guidelines, if followed can be quite nasty


Halful in reply to bevA

No, my GP did not even realise that I needed my Vit D checked because of the Anti epileptic Drugs OR the AEDs could cause osteoporosis (I changed to another GP)- I found this out on a medical forum.

fortunately I have been a 'controlled' epileptic for about 40 years.

I can empathise Halfal. I was diagnosed with 'petit mal' epilepsy in 1969 and have since been prescribed Phenytoin and Primidone for 47 years.

I repeatedly asked for, and my GP declined, a Vitamin D test so I had to pay privately to find I was severely deficient at 34 nmols/L. Optimum range is 75 - 125 Nmols. I took the results to my GP and he asked to leave it with him so he can phone the hospital biochemist for an interpretation and treatment protocol. He admitted not knowing about Vitamin D, but was knowledgeable enough to tell me that the NHS will not fund testing on cost grounds. I was eventually offered a prescription for Calceos 800 IU's daily. Thank God we can research the internet, though some doctors decry us from doing so in case we become hypochondriacs, because 800 IU's was a maintenance dose for healthy people? My research led me to take 5000 IU's daily BUT WITH Magnesium and Calcium 500 mgs daily, in equal ratio to aid absorption. Calceos only has 1200 mgs of Calcium Carbonate (the most inferior supplement) in it, whereas Calcium and Magnesium work like 'Yin & Yang' in harmony. Dr Carolyn Dean advocates more Magnesium than Calcium is required as we normally get plenty of calcium through a healthy diet. The citrate form of Calcium & Magnesium is best for bioavailability. Mg Oxide can cause diarrhoea.

I retested 6 months later and my levels were a healthy 96.8 nmols. I remained taking 5000 IU's daily and retested 3 months later and my level only increased to 111.9 nmols. That indicated to me that I need 4000 -5000 IU's daily because, as you're aware of, AED's deplete Vitamin D, Calcium and other Vitamins and minerals. Medicine, in my opinion, needs rewriting, but doctors don't like us using alternative medicine. I now only see a Chiropractor once a month and steer clear of GP surgeries. After all, surgeries and hospitals carry thousands of germs and low vitamin D levels leaves a compromised immune system open to a host of infection.

Sorry for the lengthy response but I hope a detailed experience can warn others to, at least, avoid following our experience?


Halful in reply to willyoung


Your and my experience is so similar, my nmol was 14.7 nmol, so I asked for a loading dose of Vit D (30,000 IUs) and after my local NHS area asked for a 'consultant's opininion' they were told 'vit D supplements are not clinically proven' so I was denied any Vit D supplements - expecting a big bill I ordered some Vit D from the USA...the cost was £10 for a years supply! Now I am nearly out of the osteoporosis range and STILL self medicate as the NHS will only prescribe 800 IUs maximum a day.

So ladies....if you do not want to get osteoporosis caused by AEDs - then DEMAND a vit D supplement of at least 2000 IUs a day after the menopause!

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