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Amber's Story

Amber is one of my clients living with epilepsy. I asked her if she would share her experiences of her condition, her own personal experiences of diagnosis and treatment and how she feels holistic approaches help to manage common seizure triggers including stress, lack of sleep and irregular self care.

'I’m 31 years old and I work as a Radiographer.  I enjoy reading and I’m a massive movie buff! I also love to travel and have a passion for art.

As a child I took febrile convulsions from the ages of 1 to 5 years old.  These are seizures brought on by a high temperature.  At the time the paediatric consultant assured my parents that this wouldn’t lead to epilepsy as I grew older.  However, this was not the case.  From the age of 6 onwards, I suffered from simple partial seizures.  I took them intermittently, sometimes up to 5 a day, then months would pass where I wouldn’t have any.  I went to the doctors several times but was told nothing was wrong with me.  I wasn’t diagnosed with epilepsy until I took two tonic clonic seizures at the age of 19. Although these seizures were unwitnessed, I had bit my tongue so severely that it was purple in colour and the doctors then had no choice but to take it seriously.  I was then put on Lamotrigine, an anti-convulsive drug, which managed to control my epilepsy while giving me very little side effects.

The simple partial seizures are when only one part of the brain is affected.  What I felt during these seizures can be difficult to explain.  The best I can describe is that I had a horrible feeling of dread come over me like something really bad was going to happen.  I would get a sense of deja vu, where I would feel like I have lived this moment before.  My heart would start to race and I would feel nauseous.  This would last for 10 to 15 seconds although at the time it would feel a lot longer.  I would often have a headache afterwards and feel tired for a few hours.  Tonic clonic seizures or ‘fits’ are when the electrical disruption spreads to the whole brain.  During these I would lose consciousness and my body would convulse.  Immediately afterwards I would feel so tired that I had to sleep for a few hours.  I would have no memory of the seizures, unlike the simple partial seizures.

For myself, the biggest seizure triggers are tiredness and stress.  For the past year I have been under a lot more stress than usual and I was scared that this could cause a seizure. Having been seizure free for a decade now, this would have a dramatic effect on my life. It would affect my work and my ability to drive.  I also had been suffering from headaches that sometimes would last 3 weeks at a time.  So I did some research at how I could best reduce my stress levels and I came across holistic therapies. Although my medication works in controlling my seizures, I liked the idea of using a complementary therapy that could help my stress and anxiety.

I wanted someone who was appropriately qualified and who had experience with treating people with epilepsy.  I also wanted someone who was approachable and easy to talk to.  I came across Andrea who worked local to where I stay and I had a good feeling about her straight away.  She had an abundance of experience and qualifications and I contacted her that day.  Before I booked any therapies, Andrea asked me to first consult with my epilepsy doctor to make sure they were happy for me to try it.  I found this reassuring as I felt my epilepsy was being taken seriously and that my health was a priority.

I feel the therapies I’ve had have been extremely helpful for both my mental well being and helping to control my epilepsy. They give me back a sense of control that you seem to lose with having the condition. I’ve had Reiki and Crystal Therapy. I really enjoyed the Reiki treatments I had. They allowed me to totally relax and after just one session, my headaches disappeared.  After a couple of Reiki sessions, Andrea suggested that I try Crystal Therapy.  I was taken aback at how powerful the crystal therapy session was. Like Reiki, I was put in a very relaxed state of mind however I also felt a surprisingly strong positive energy that stayed with me for days.  I felt so energised and upbeat. Andrea emailed me with the crystals that she used in the session and I went out and bought myself some that I now carry around with me. 

As well as taking my medication, I make sure I get as much sleep as I can and try and remain as stress free as possible, which can be difficult at times.  I try and eat healthily and exercise too.  I’m also a member of Epilepsy Scotland (there are also many support groups out there such as Epilepsy Society and Epilepsy Connections) which has been a great support and they have given me advice on a number of issues. Epilepsy can be difficult to live with, especially if not controlled well.  My advice for anyone struggling with the condition is to try and live a healthy lifestyle.  This should include eating right, exercising but also taking care of your mental well being too. Getting enough sleep is vital as tiredness is a major trigger, followed by stress.  If you are prone to stress, I can’t recommend enough the use of holistic therapies as it has really helped me.  

I think holistic therapies are a great way for people living with epilepsy to help manage their condition. My advice would be to do some research beforehand to make sure you find the right therapist for you. Make sure you find someone who has the appropriate qualifications. I admit I didn’t know what to expect when I first tried holistic therapies. Coming from a health professional background, it’s not something I had considered as I concentrated on medicinal treatments only.  However I have been so surprised by how much it has helped me to reduce my stress and anxiety, and in doing so, helped keep my seizures at bay.'

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