SUDEP News: What does it mean for me?

In this month’s SUDEP News, Dr. Moseley shares research results that highlight how drops in oxygen levels in the blood may lead to Sudden Unexpected Death in Epilepsy (SUDEP). This is not a definite cause, but offers information on one piece of the SUDEP puzzle.

What causes low oxygen levels in the blood stream?

It’s important to know that oxygen levels in the blood stream can drop for many reasons. Oxygen levels may drop during some tonic clonic seizures (also called grand mal or convulsion), but may also be seen in some partial seizures. Most often the brain and body respond to a low level of oxygen by correcting itself. The blood oxygen level rises back to normal on it’s own most of the time and the person is fine. Yet there are times when this process doesn’t work right and problems can occur. For example,

• A person’s airway may be blocked and their breathing can’t return to a normal pattern. This could happen if a person is lying face down during a tonic clonic seizure, if a seizure occurs in water, or if fluid or food blocks their airway or gets into the lungs. Seizure first aid is critical here.

• A seizure lasts too long, usually 5 minutes or longer. Breathing troubles can occur and the person needs emergency help to stop the seizure and make sure they get enough oxygen.

• A person may have another medical problem that causes low blood oxygen, such as chronic respiratory or heart problems, uncontrolled or severe asthma, or severe sleep apnea. These problems could affect how oxygen levels during a seizure bother a person.

• Complex changes in the brain may occur during some seizures that could lead to SUDEP if oxygen levels are dangerously low too.

Why is this information important? What should I do now?

• If you have epilepsy, make sure people around you know what to do if you have a seizure! If you have a family member with seizures, make sure that all family members and other people your loved one will be with know what to do.

  • Practice what to do – Seizure Drills can be a great way for families to learn what to do.

  • Don’t forget to turn a person having a tonic clonic seizure onto their side.

  • Keep their nose and mouth clear so they can breathe easily – but don’t put anything in their mouth!

  • Know when to call for emergency help – for example, if a seizure lasts too long or the person has breathing troubles.

• Create a Seizure Action Plan (also called a seizure response plan) and keep it handy so everyone knows what to do.

  • If you have a school aged child with seizures, talk to the school nurse and create a Seizure Action Plan.

  • Call your local Epilepsy Foundation and ask them to do a School Nurse Training program at your child’s school.

  • If you are an adult with epilepsy and are still having seizures, talk to your employer or others you spend time with about your Seizure Action Plan.

• If you have other medical problems that could affect your breathing, heart or sleep, make sure you are treating these properly. Keeping these things controlled may help lessen seizures or decrease the risks associated with seizures.

  • If you think you have problems sleeping, talk to your doctor about a sleep study. Sleep disorders can make a person chronically sleep deprived and worsen seizures. Some sleep disorders affect oxygen levels in the blood too.

  • Make sure you tell your epilepsy team about your all your health problems!

Sometimes I’m told not to worry about seizures and just live normally. Other times I am told about the dangers of seizures.

Which message do I listen to?

Living with epilepsy can be confusing. Epilepsy is complicated. It can look, feel and act different in different people. Both messages are equally important!

• People do need to live life. It may not be easy sometimes, but letting fear get the better of you isn’t good either.

• Work hard to get and keep the best seizure control that you can. This doesn’t mean to worry about every seizure. That’s not healthy for anyone. It does mean to take epilepsy seriously.

• Seizures can be dangerous, depending on the type, length, and risks. Make sure you ask your health care team about your seizures and risks. If you don’t understand, ask more questions. It’s your epilepsy, so you need to know as much as possible to take care of yourself and your family.

Where can I get more information about SUDEP?

SUDEP is not common, but it can occur. There are some things people can do to decrease the risks of SUDEP. Visit the SUDEP FAQs page to learn more.

Best wishes for a safe week!