I have found that having an epilepsy nurse can be vital to keeping my hope and moral up when my seizures get particularly bad.Annie
Saturday’s National Epilepsy Week subject is about epilepsy nurses so I thought it would be best to detail my personal experience.
I have found that having an epilepsy nurse can be vital to keeping my hope and moral up when my seizures get particularly bad.
As an epilepsy patient, I do not have a consultant like most people do. As I transitioned from my children’s hospital at 16, I was transferred to someone random who did not get to know me very well and is now off the grid for reasons unknown to me. This led to a complicated path where my neurosurgeon acted as my consultant for a while before he referred me to an epilepsy nurse as I am lucky to have one local to me.
Now I am seeing her once every three months and she’s always eager to check up on my wellbeing and to see how I’m coping which is exactly what I needed. Before being transferred to my nurse I saw my neurosurgeon maybe twice a year, so it is much more convenient to have a constant source of contact who is also available outside of appointments by email or phone.
What my nurse has personally done for me is get one of my tablets changed to slow-release meaning the effects now last longer and I don’t feel so tired in the evenings. She’s also got me referred to counselling, both neurological for the after-effects of my surgery and general NHS counselling for other epilepsy related problems I was going through involving depression which I’ve mentioned in the past.
If you suffer quite seriously with your epilepsy seizures or knock on effects from the condition, I’d recommend trying to see a nurse if you can. It can be possible through home or hospital appointments and it can feel a lot more personal than bi-annual appointments with a consultant. Their job can also be more family orientated which can help keep you in the know about how to get on in certain situations as well as being able to answer any questions the family or patient might have.
I’m very grateful for the nurse I have and would recommend, if you feel this kind of help is necessary, to look into it with your neurologist or GP.
