(Sudden Unexplained Death in Epilepsy Patients)
For reasons that are poorly understood people with Epilepsy have an increased risk of dying suddenly for no discernible reason. This condition is called S.U.D.E.P
Although sometimes the cause of death in S.U.D.E.P is officially unknown. It is said that seizure activity in the brain can cause an irregularity in the heart rhythm and breathing and can even stop the heart, which could be the cause. However more research is needed.
Who is more at risk of SUDEP?
SUDEP rates are highest in young people aged 20-40
Another major risk factor for SUDEP appears to relate to the severity of the epilepsy and having other health conditions as well as Epilepsy.
SUDEP is more common in people with:
- Frequent severe uncontrolled generalised seizures and that do not respond to treatment.
- Early age of onset of epilepsy
- Having Epilepsy for a long time
- A higher number of antiepileptic medications, and at high doses
- Frequent medication changes
- Night-time seizures
- Being a young adult
- Drinking large amounts of alcohol
- Having seizures while being alone
Reducing the risk :
If your seizures are uncontrolled and frequent and your doing all the right things such as taking medications on time etc there is not much else you can do on that point.
However to reduce risk of SUDEP you should:
- Always take your medication as prescribed
- Make sure you don’t run out of your medication
- Never be alone whilst having a bath/shower have someone standing by who will hear you if you fall.
- Never lock doors so people can’t get to you
- If your seizures are uncontrolled always be with someone 24/7 that knows how to deal with your condition
- If you have seizure at night look into anti-suffocation pillows.
The sudden death of a loved one for any reason (especially something like SUDEP) is very upsetting and traumatic. If you have lost someone close due to this condition It may help to talk to someone.
Here are some links that may be of help:
CRUSE (Bereavement Care)
PO Box 800, Richmond, Surrey TW9 1RG
Helpline: 0844 477 9400 Web: www.cruse.org.uk/
Cruse Bereavement Care is the largest bereavement charity in the UK.
SUDEP Action, 12 A, Mill Street, Wantage, Oxfordshire, OX12 9AQ Helpline: 01235 772850 www.sudep.org/ SUDEP action is a leading Epilepsy charity that focuses of SUDEP and helping those who have been effected.