Epilepsy Support
For many people, one of the greatest challenges of living with a low-grade glioma is coping with seizures. Finding the right balance of anti-convulsant medications can take a while to establish and is likely to need to be changed a number of times over the years. Whilst some GPs are experienced in this field, it is usually best to ensure that your medication is reviewed at least annually by the Neurologist at your hospital. If you notice a change in your seizure pattern at any time, it will be worth asking for an appointment. A vital key worker for you will be your Epilepsy Nurse Specialist at the hospital; if you are not sure who this is, do ask.
When you attend an epilepsy clinic, it is helpful to have somebody with you who has seen you have a seizure and can accurately describe what happens. Keeping a seizure diary (a note of when and what happens) is also very useful.
Epilepsy Society supplies a wide range of information and support services. Their UK Helpline is open 10am-4pm, Monday to Friday, on 01494 601 400.
Epilepsy Action has an extensive network of branches throughout the UK which provide local support to people with epilepsy, their family and friends and professional carers. Run by volunteers, most branches hold regular meetings and offer a mixture of social events and informative talks and discussions for both adults and teenagers with epilepsy.
Helpline: 0808 800 5050