Added to the common questions we have addressed here, we recognise that for people across the country, normal life has changed massively. Due to these difficult times, it could be easy to forget best practices when it comes to managing your epilepsy - therefore, we have listed some pointers below:
- At all times, be sure to mention to pharmacists that you have epilepsy if purchasing over the counter products. It is essential that they know you have epilepsy in case there is any possble counteraction with your epilepsy medication. If unsure,contact your epilepsy nurse specialist.
- Similarly to the above, if you are developing symptoms of COVID19, you must advise your healthcare professional that you have epilepsy. Knowing this will help your Doctor make the best decision for your treatment.
- Be sure to keep your prescription filled and make sure your epilepsy medication is in date.
- Stay active, know your triggers and manage your stress in so far as possible (more on that here). See also our section on lifestyle and triggers.
- Managing stress is very important in the current environment as stress can lead to increased seizures for people with epilepsy. Like epilepsy, stress is individual so what work for one person may not necessarily work for another. Further reading on this here and useful information can also be found in the additional resources section here.
- With COVID19, we are seeing increased interest in seizure alarms and monitors. If you need advise on the best alarm for you, please contact our National Information Officer or see Pg 18 of our Safety & Seizures booklet here.
Preparing for Virtual Appointments
During the COVID19 pandemic clinicians are finding new ways of delivering care to patients and expanding on services that can offer support and care remotely.
Epilepsy Specialist Nurse helplines have long been established and provide an essential link to the consultant led team between appointments and people with epilepsy may be familiar with accessing these helplines for information and management.
Virtual appointments have already been in use in some hospitals in place of outpatients attendance but for many people with epilepsy, this will be a new experience.
Remember - the hospital will tell you in advance of your appointment date to expect your Outpatient appointment to be delivered virtually so you can make arrangements to be available at the time given.If you are having your clinic outpatients appointment delivered virtually for the first time, here are some tips to prepare for the call to make sure you get what you need from the appointment.
- Think about where it is best to take the call - this could be a quiet room with minimal distractions but where you can get stable phone coverage. Have a pen and paper to hand and your phone charged up.
- Have a list prepared of your key priority questions to ask the doctor or Epilepsy Specialist Nurse.
- Have an up to date seizure diary with details of seizure type, pattern, frequency and duration.
- If your seizures have been witnessed have a written witness account from anyone present, or if the witness is a family member sharing your home you may want them to be available during the call to clarify any details.
- Report any new features to your seizures.
- Have your medication to hand and details of medication for other conditions as well as any over the counter medicines you are taking.
- If you have questions about your prescription or renewal have your pharmacy name and phone number to hand in case these are needed.
- Report any possible side effects of medication.
- Take notes of any guidance and, if there is time, recap on the main points discussed at the end of the call to make sure you are clear about the guidance and what was discussed.
- The clinician will advise you about when you should be seen or called again at the end of the call so make a note of this and if you do not receive an appointment time near the date suggested you should contact your Consultant’s secretary directly.
Remember, our Community Resource Officers are availble to advise and support you with your epilepsy so please don't hesitate to call. Details of local Community Resource Officer here.