Patty Shafer, RN, MN
Epilepsy.com Resource Specialist
Safety is a concern for most people with seizures. Sometimes worries about injuries cause more problems than the seizures and can prevent people from living active and fulfilling lives. Developing practical safety plans requires people to realistically assess their risks for injury in relation to the situation at hand. In this column, I’d like to address safety risks for people undergoing medicine changes or EEG telemetry in hospital settings.
For many people with epilepsy, coming into an epilepsy monitoring unit or other hospital setting to provoke seizures or to change medicines increases a person’s vulnerabilities, risk for breakthrough seizures and potential injury.
What can a person do to stay safe in an epilepsy monitoring unit?
If the goal of an admission is to record seizures during EEG telemetry, then you want to have seizures. Being prepared for this testing and working with the staff on the monitoring unit is the first step. Some typical safety precautions in an epilepsy monitoring unit or hospital setting may include:
- Sitting on top of the bed or in a ‘safe’ chair. Staff may ask you to wear a ‘seatbelt’ restraint to keep you from getting out of the bed or chair during a seizure.
- If video monitoring is being done, make sure you’re in range of the camera; sorry but you’ll have limited privacy except during personal care.
- Keep the side rails up on the bed and seizure pads on the rails. The side rails prevent falling out of bed during a seizure, while the pads provide a soft surface to lessen chance of injuries.
- Don’t get out of bed by yourself! Talk to the nurse and find out what you are allowed to do and not do. The rules of a unit may vary depending on your type of seizures, frequency, when they occur, and the risk of injuring yourself in that environment.
- Don’t be surprised if the staff wants someone to walk with you whenever you are out of bed. Seizures are unpredictable, especially if medicines are being lowered or changed.
- Bathrooms are notoriously dangerous since edges on sinks and showers are hard and maybe even sharp! You may need to have someone with you in the bathroom or use a portable bathroom that can be moved next to the bed. Maybe not the ideal, but it’s a lot safer than falling on hard or sharp bathroom surfaces!
- Find out from the doctors and nurses how seizures will be treated when they occur. Most often, epilepsy doctors and nurses will have a ‘rescue plan’ which involves giving you a short-acting seizure medicine to stop seizures quickly and prevent them from going into an emergency situation. Adults may be given medicine through a blood vessel in their arm (intravenously) while a child or someone who doesn’t have IV access may be given medicine rectally or in some other way.
- Make sure the staff know what triggers your seizures! These triggers could be used to help record seizures quicker. Knowing your triggers will also help the staff keep you safe when a trigger situation occurs.
What can people do to stay safe during medicine changes?
- Whether medicines are being changed in the hospital or at home, talk first to your health care provider about safety tips to follow. What you need to avoid or do will depend on the type of seizures, frequency, date of last one, and how likely it is that seizures may recur. Also safety plans need to be tailored around a person’s activity and how fast or slow the medicine changes may be made. Usually the greatest risk for breakthrough seizures comes after the new drug is added and the initial drug is lowered. That’s because it may be too early to know how helpful the new drug is or what dose may be best for that person.
- First and most important, get all changes in writing – exactly when to change the drug and how much is changed at a time. Write the instructions in both the dosage of drug to change as well as the number of pills to change.
-Double check your prescriptions from the pharmacy before you start the changes. Make sure you have the correct strength (or dosage) of pills so you are making the changes the way the doctor recommended. You don’t want to lower some medicines too quickly or you can run into problems.
-Ask your doctor and nurses if other problems or concerns could be affected by changing a seizure medicine. For example, some seizure medicines affect mood, headaches/pain or other health problems. During medicine changes, tell your doctor if you notice any changes in these areas.
-If you’ve been driving with well controlled seizures, your doctor may suggest you not drive for a period of time when medicines are being changed. Ask about this ahead of time so you can make alternative plans.
-If your job is very physical or involves climbing ladders or other potentially dangerous situations, you may want to alter your activity for a while. Can you adapt your job to avoid high risk situations for a while?
-If you normally work or live alone and you are having seizures before you start making a change, consider whether you can stay with someone for a while until the new drug has been raised to a safe level. Alternatively, if you start having breakthrough seizures when a medicine is withdrawn, you may also need a little extra help.
--If you don’t like how you feel on a medicine, don’t stop it on your own! Talk to your doctor first about what to do. Stopping a medicine abruptly is the greatest risk for seizure emergencies such as status epilepticus or prolonged seizures – a risk that no one wants to have happen!
- Keep track of any side effects. Some may go away on their own, while others, such as poor balance, coordination or blurry vision, may be related to the dose of medicine. Since these side effects also place a person at risk of falls or other injury, it’s important to think about this when you develop your safety plan!
Have a plan on how and when to call for help!
-Do you have a family member or friend who lives close by and can help if you need it? How would you contact them?
-Do your children or roommate know how to call for help?
-If you live alone, consider getting a Lifeline or emergency alert system.
-Ask your doctor when to call him or her for changes in seizures or side effects, when to use rescue medicines at home, and when to be seen in an emergency room.
- If you have a vagus nerve stimulator, don’t forget to use the magnet when you have a seizure! Many people find that this helps shorten or stop a seizure and can be particularly helpful during changes in medicines.
This is just a few safety tips to consider. Use this to help you talk with your health care providers and develop your own safety plans!
Best wishes and stay safe!
by Patricia Osborne Shafer RN, MN
Resource Specialist, epilepsy.com
Last Reviewed: 11/7/2012
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