Safety Concerns for Discharge from an Epilepsy Monitoring Unit

Last week, safety factors in an epilepsy monitoring unit (EMU) were discussed. EEG testing can help diagnose if a person has epilepsy, the kind of seizures, if a new seizure medicine may help, or if other options such as surgery may be possible. Safety concerns will continue at home if medicines were changed in the hospital or if you've had more seizures than usual. Here are some questions to ask your epilepsy team before you go home after being in an EMU.

What should a person be aware of before going home after EEG telemetry or testing?

• Time of last seizure: You should know when your last seizure occurred. Are your seizures stable after the testing or medicine changes? Are your seizures back to your typical seizure frequency or pattern?
• Was the diagnosis changed during the hospitalization? You should be aware of the initial findings and what they mean. A final diagnosis and plan for changes may not be ready when you first go home. A lot of information was probably collected and the epilepsy team will need time to review it.
• What medication changes were made during admission? Know which medicines were stopped or lowered – were they were put back at usual doses or stopped altogether? Make sure you go over all these changes with your doctor and nurse before you leave!
• Will more changes in medicines be needed after discharge? Sometimes medicine changes are made slowly and you will be told when to increase a dose at home. Make sure you know when to make a change and what to do if you aren't feeling well as changes are made.
• Do you know exactly what to take at home? Go over your list of medicines carefully with your doctor, nurse and family. If a medicine was stopped, put that medicine away so you don't take it by accident. Know the dose of each pill, how many pills to take at each dose and when to take them.
• Do you need a new prescription? Make sure you have the right dose of pills at home or get a new prescription. If it's a new medicine or different formulation (generic, brand, long-acting), call your pharmacy or insurance company to find out if a prior authorization form needs to be completed before you can get the drug. You don't want to go home and be without the new seizure medicine!
• Were you given a seizure medication to take "as needed" or as a rescue treatment? Generally, these are prescribed only to be used when seizures or clusters of seizures are different from usual ones, for example, too many within a certain time period or change in type of pattern.
• Make a seizure response plan or update your current one with any changes: Know what to do when you have a seizure or if seizures change after admission. Know exactly when and how to take any rescue medicines. Some may be taken orally, placed under the tongue, into the nose or like a suppository.
• Know about possible side effects: Get a list of what to look for, when to call your epilepsy team, and when to be seen urgently. Ask if a new seizure medicine will affect other medicines you take and what to do.
• Ask about reminders for taking medicine: Some people prefer to use pillboxes and alarms to remind them when to take medicines. Others do best if medicines are packaged by a pharmacy into pillboxes or blisterpaks. Ask the nurse about these and talk to your pharmacy for help.
• Use a medicine schedule: Make sure you have a list and schedule of all medicines. Throw out any old lists so you don't get mixed up.               
•  What changes in mood or behavior should be monitored? Sometimes people notice changes in how they feel or act after they have had seizures, especially more than normal. Mood changes could also happen after stopping or starting a medicine. Make sure you know what to look for and who to call, for example, if you feel down, anxious, have difficulty sleeping, or feel unsafe in any way.
• What safety precautions are needed at home? Ask when you can return to your usual activities, for example, school, work or other activities. Don't drive until you are seizure free for the appropriate length of time and you have approval from your epilepsy team. If you fall or injure yourself at home, talk to your nurse about a safety plan and if any special aids are needed.
• Coordinating care after the hospital: Sometimes people need extra help after discharge. You may benefit from a rehabilitation hospital or visiting nurse until seizures, medicines and your safety are stable.
• Know when to call for help: When to call your epilepsy doctor, nurse, primary care, mental health provider or other specialist.  
• Know when to get emergency help: This will vary depending on how far away you live from the hospital, your usual seizures, if medicine changes were made, and other factors. Always ask what to do and when to get help.

This may look like a lot of questions, and you may have other questions or concerns too.  Be open and honest with your team and get these concerns addressed before or after a hospitalization. Don't wait until the last day or until you get home. Everyone wants the same thing – to help you and your family be safe!

With best wishes,
Patty Osborne Shafer RN, MN
Associate Editor/Community Manager