Complementary approaches to epilepsy in young people

A few young people we spoke with had tried various complementary (alternative) approaches alongside conventional medicine (from a doctor) to try and manage their lives. People were interested in complementary therapies for various reasons. Some didn’t ‘like’ conventional medicine and wanted ‘to avoid’ it, others wanted to explore different options, after having unsuccessfully tried many different types of epilepsy medication. 

Some people with epilepsy use complementary ways to try and lower the number of seizures they have, but there is no scientific evidence to suggest that complementary approaches can reduce or stop a person’s seizures. So it is important to keep taking anti-epileptic drugs and to talk to your doctor before using complementary approaches.

People talked about a range of different complementary approaches, including herbalism, homeopathy, aromatherapy*, massage and holistic therapy. Some had also tried meditation to help them relax. 

Zoe wants to avoid conventional medicine and take a ‘proactive’ approach to her life. She is…

Age at interview 22

Gender Female

Age at diagnosis 16

View profile

Other than, than begging my GPs for like any information, I haven’t looked for it, really. I suppose because I was still in denial, but I’ it was, yes it was in this past year that I’ve been more proactive about doing something about it, about asking these questions, about seeing them, perhaps seeing the neurologist again. The actual path that I’ve taken, I’ve I’m trying to again avoid conventional medicine as much as I can, I’m going on the alternative route. I wanted to pursue homeopathy and to see what they have to say about epilepsy, I mean, and this was at first with a grand wish and intention of taking myself somehow off of the Tegretol, tentatively because of course one must be very careful, about this, about these things. But, I found via word of mouth a specialist of homeopathy, yes trained in conventional medicine who does work with the neurological side of it and I’ve yet to see her, I’ve waited about three months for a NHS referral to the Homeopathic hospital, I’ve yet to have my appointment, it’s coming up shortly.

Embed Print Transcript

The main benefit of complementary approaches for those who used them was relaxation. Some had found help in meditation and aromatherapy* massage, for example, because it had helped relieve stress, which was often a trigger for their seizures.

Holistic therapy, consisting of massage with aromatherapy oils, has ‘done a lot’ for Morven,…

Age at interview 21

Gender Female

Age at diagnosis 8

View profile

Holistic therapy, they managed to keep me nice and you know, chilled out, and they would always calm me down when I’ve had a bad time, as well, so I go there about once a month and it’s lovely to get the most relaxing feelings inside. It’s like heaven’

Can you tell me more about the holistic therapy?

Well I go there monthly and just well lie down on their bed and they give me a full body massage, and I just like close my eyes and well just don’t think of anything just think of you know just think nice and happy, just nice and relaxing and just lets me calm down and chill out, and it really does help a lot. So that’s the way it works [laugh].

Yeah is it sort of do they use kind of aromatherapeutic oils or something like that you know?

Yes they do use some oils on me and I can’t remember the name of the exact one but I think they used some lavender oil now and again, that’s one thing I use myself ‘cos when I was going through my exams at school I was getting stressed out so they suggested me just to use some lavender oil just on the, I can’t remember the name of the part of the head, over there, just put some lavender oil on myself so I could you know get myself relaxed and I was doing that. That did help then and nowadays as well when I’ve been going through the stressful points of for the housing and sort of looking into, I found myself just having some lavender oil then, and it’s helped as well. So, aromatherapy helps as well. It’s done a lot for me.

Embed Print Transcript

Some people also felt that complementary approaches helped with depression and this, in turn, helped the epilepsy. One woman said her depression stressed her out and brought on more seizures but meditation reduced stress and so helped the epilepsy too.

Helen’s meditation sessions in school reduced stress and this helped her cope with her depression…

Age at interview 23

Gender Female

Age at diagnosis 22

View profile

She [school librarian] used to be really great. She was our support system and she used to run little meditation sessions, so it was like a tiny, tiny little room, off the side of the library and I used to find that used to really help. It helped with my depression and I tend to find that things that help with my depression help with my epilepsy. Almost like my depression makes me stressed or it just gives me maybe just an altered consciousness which brings on epilepsy, anything outside normal and that helped me quite a bit. But apart from that, alternative therapies well I haven’t really associated much with other people with epilepsy.

Embed Print Transcript

Complementary approaches also gave people an opportunity to be ‘proactive’ and try gain control over their epilepsy and overall lifestyle.

Zoe has been ‘astounded’ by the difference herbalism has made for her.

Age at interview 22

Gender Female

Age at diagnosis 16

View profile

Herbalism is all about nourishing, nourishing the body, nourishing the tissues, which of course means the greatest of the system, the most intricate system of tissues in the body is the brain. So he’s developed for me a tonic, a personal tonic that is intended to nourish my nervous system and yes it took, I mean different herbs work at different paces, but it took a fortnight, three weeks or so where I was astounded at the difference it made that, I realised that I don’t have to be forever sitting on the threshold and consciously aware that at any moment at any time. I’m stable, I call myself stabilised now as far as the seizure concerns go. And I’m pleased, I’m pleased to no end, this shows that there is a promise and I realise that, no, now is not the time, I know I can’t yet take myself off the tegretol, but perhaps, with, as the future comes, we’ll take it as it comes.

Can you tell me a little bit more about the herbalism. How does it work? Is it a liquid, or capsules that you take? And is it a course, do you take it all the time?

Yes, indeed I take it regularly now. It’s a tincture, it’s made from, it is a liquid that you take 5mls, thrice a day before meals. Yes, it’s the absolute condensed essence of magic, the power that is contained in these herbs. Yes, it’s been know for years sort of put aside as soon as drugs and chemists came in, but it returns with a force now. Yes, could I tell you really what went into it; it’s the herbalist who knows. Of course they know these herbs that best benefit the nervous side of things, the nervous system.

Embed Print Transcript

Zoe lists benefits of a herbal tonic she takes: feeling more stable, having clearer thoughts and…

Age at interview 22

Gender Female

Age at diagnosis 16

View profile

How would you describe the main changes [of herbalism]?

Um, I would say being stable. Not having these concerns, I mean, I still become aware, and I’m pleased about that now because, as I say it again, for these years that I was rather denying that anything had happened, anything had changed. I suppose in essence my conscious self had closed down, closed down to these changes, to my physical self, but reconciling myself to this psychologically has opened myself to be aware of these things physically. Such that I am more attuned to my status at any time, to what’s going on. And yes when still, I occasionally have, I wouldn’t say so much an aura, as just becoming heightened senses, sensory aware, and I just accept it quietly and for the most part it doesn’t manifest into anything, which is good.

Embed Print Transcript

One woman said she had looked into using complementary therapies to help her to lead a healthier lifestyle. This in itself had made her feel better about herself and helped release stress. She also felt complementary approaches had helped with the side effects of her medication and improved her overall quality of life.

Some young people said they were interested to find out more about complementary approaches and hear more about other people’s experiences of them. Others said they were not interested in complementary approaches, mainly because they felt the medication was working well for them.

* Some aromatherapy oils stimulate the brain (making it more sensitive), which could trigger seizures for some people with epilepsy. These include: hyssop, rosemary, sweet fennel and sage.

Brain surgery and VNS for epilepsy

We spoke to a few young people who'd had brain surgery or Vagal Nerve Stimulation (VNS) and here they talk about their experiences. Brain surgery...

Seizure alert dogs

Seizure alert dogs are assistance dogs trained to detect the signs of an epileptic seizure in their owner, before it happens. They warn their owner...