Ryan's Story: epilepsy and osteoporosis

It is known that some medications used to treat epilepsy can increase your risk of osteoporosis and broken bones. It is not known what the exact reason for this is, but it is thought that some anti-epileptic drugs alter the way vitamin D is broken down and is used by the body. Vitamin D helps the body absorb calcium which is a vital nutrient for bones. Most people obtain the majority of their vitamin D from exposure to sunlight between the end of March and the end of September.

As someone with epilepsy who was diagnosed with osteoporosis 2016, 34-year-old Ryan, knows what it is like to live with two chronic health conditions. We spoke to Ryan, who lives in Falkirk, Scotland with his wife and daughter, about his experience to mark National Epilepsy Week (24 - 30 May) this year.

Signs and symptoms

Ryan was first formally diagnosed with epilepsy when he was 12 years old, although he thinks he might have had the condition for much longer.

“I found out I had osteoporosis in 2016, but the way it happened seems almost unreal. I had a seizure in bed and woke up in a bit of pain. I then went back to sleep and woke up the next morning with my back in agony.

“My GP tried to tell me it was just that my back had gone into spasm, but I knew that wasn’t the case and eventually I was sent for a DXA scan that revealed I had osteoporosis in my spine and osteopenia in my hips. The scan discovered I had fractured my spine in four places.”

To Ryan, osteoporosis was something that he thought could only ever affect people much later in life.

Treatment

“I was given calcium and vitamin D supplements to take in the morning and at night, and 70mg of alendronic acid in a tablet form to take once a week.

“In terms of advice about living with osteoporosis, I was told about the importance of diet and exercise, and I went to see a physiotherapist initially but was in so much pain that even doing the exercises was difficult.

“I try and get out into the garden for a daily walk with the support of my wife, but everything has changed a huge amount since experiencing spinal fractures. One of the most difficult things was dealing with the pain. A lot of the stronger pain killers are ones I can’t take as they are not recommended for people with epilepsy.”

Adapting and coping

“I have good days and bad days, but I try to stay positive. As I have been dealing with health concerns for so long, you do start to build up resilience and you have to try and find the positives. For example, lockdown was not something that bothered me at all as I rarely leave the house and so it wasn’t a shock.

“I am very grateful that my wife and daughter have a very positive attitude and that is important because ultimately, I am not aware of what is going on during the seizure, so in a way it is worse for them as they see me having it.

“Since I have learnt about the link between epilepsy and bones in general, I am really having to fight my corner to ensure I get the right treatment that takes into account both epilepsy and osteoporosis – so I don’t do damage to other areas of my bones. I’ve been in severe pain before due to spinal fractures and have had my osteoporosis dismissed by an epilepsy consultant as my bone health isn’t seen as the priority. I have gone on to experience a total of nine spinal fractures in different places.”

Looking ahead

“I was never warned about the damage my epilepsy treatment could do to my bones. There are so many side effects listed on all the drugs leaflets, but I really don’t ever remember having read it anywhere or being told.

“I would urge other people to research osteoporosis as much as they can and talk to other people about bone health as you need a lot of understanding to get the help you need. Once I knew I had osteoporosis, I came home and started researching as I still didn’t really know what it was, and I didn’t receive much advice or information.

“Having epilepsy is something I have always had to manage, but when I became a father, I started taking my health even more seriously as I wanted to be around for my daughter. Taking care of my bones has to be a priority now, and so yes, I have epilepsy, but I have osteoporosis too. Neither condition defines me as a person, they are both important and should be considered as such by all medical professionals.”

Professor Neil Gittoes, Consultant Endocrinologist and Associate Medical Director at University Hospitals Birmingham, and expert adviser to the ROS, explained:

“There does seem to be a link between anti-epileptic drugs and weaker bones – they may affect the way our body uses vitamin D. Taking a vitamin D supplement is recommended to help keep bones strong.

“Occasionally people taking anti epileptic drugs do have fractures – sometimes it is simply the result of the seizure and not because of weaker bones so it’s important to get advice if this happens.”

To find out more about the link between osteoporosis and anti-epileptic medications, see here or contact our Helpline to speak to one of our specialist nurses.

Epilepsy Action is a charity that improves the lives of everyone affected by epilepsy. They give advice, improve healthcare, fund research and campaign for change. Visit their website to find out more.

Do you have a story you’d like to share? We’d love to hear from you. Tell us about your life with osteoporosis.