November is National Epilepsy Awareness Month (NEAM). “There is No Neam without Me”
Epilepsy is the fourth most common neurological disease. A person is considered to have epilepsy when they have 2 or more seizures in greater than 24 hours. Consider this: 1 in 10 people will experience a seizure in their lifetime, and 1 in 26 will be diagnosed with Epilepsy. Seizures are also part of the Fatal Five – the top five conditions linked to preventable deaths in people with IDD.
The Epilepsy Foundation shares the following ways that you can raise awareness regarding Epilepsy. Click the links to access these great resources.
- Post a seizure first aid poster at work or school.
- Sign up for a free seizure first aid training.
- Put on your favorite purple outfit.
- Volunteer as an Epilepsy Awareness Ambassador.
- Register for a Walk to END EPILEPSY or Fundraise Your Way.
- Get creative and come up with other ways to spread awareness.
- Make some noise on social media by downloading and sharing these graphics.
A person who is diagnosed with Epilepsy may experience more than one type of seizures. And those who are supporting them may not be aware that what they are seeing are actually seizures.
Something important to remember regarding epilepsy and seizures (from HRS Clinical Pearls fact sheet) is that seizures can present in manners that may be misinterpreted as behavioral signs such as the following:
- Disrobing
- Increased agitation
- Failure to “pay attention” in children or “daydreaming”
- Sexually acting out
- Physical or verbal aggression with no antecedent
- Repetitive or ritualistic type behaviors that are short lived
- Rapid eye blinking
- Tantrums
- Falls
- Sudden “sleep”
- Random talking
- Being “hard to reach”
Unfortunately, in those with IDD, epilepsy can be difficult to manage and can also be severe. Many of the medication that are prescribed to treat seizures have side effects that can cause someone to appear as if they are having behaviors. Some of these are listed below:
- Agitation or aggression
- Dizziness, weakness, balance issues
- Blurred vision
- Movement disorders such as Tardive Dyskinesia, Extrapyramidal symptoms
- Cognitive impairment
- Refusal to eat due to upset stomach
Some seizure medications should have blood levels checked as they can cause dangerous side effects from toxicity if the levels are too high. Other medications can cause bone loss when taken for too long. These can include:
- Tegretol, Tegretol XR, Carbatrol (carbamazepine)
- Phenobarbital
- Dilantin, Phenytek (phenytoin)
- Trileptal (oxcarbazepine)
- Mysoline (primidone)
- Topamax (topiramate)
- Depakote (valproate)
If someone has been taking these medications, it may be beneficial to discuss with the prescribing physicians if diagnostic testing should be done to determine if there has been bone loss.
Epilepsy Association of Western (and Central) Pennsylvania is an excellent resource for information regarding Epilepsy and Seizures. The following information is from their website at eawcp.org.
Facts about Epilepsy:
- Epilepsy can affect anyone, at any age, at any time.
- Epilepsy is not a disease, a form of mental illness, or a sign of low intelligence.
- Epilepsy is not contagious.
- In 60% of cases, the cause of epilepsy is unknown. Head trauma, infections, or a neurological disorder can be involved. Sometimes, heredity also plays a role.
The Truth About Seizures
- A seizure usually lasts between a few seconds and a few minutes.
- You cannot swallow your tongue during a seizure — never place an object in the mouth of someone having a seizure!
- Epilepsy usually can be treated effectively, most often with medications and sometimes with special diets or surgery.
- Many people with epilepsy can achieve control of their seizures.
You can also check out their website on Facebook, Epilepsy Association of Western and Central PA | Pittsburgh PA | Facebook. You can find information regarding support groups and events such as the first ever Epilepsy Awareness Night at the Erie Otters Hockey Game November 26th. Tickets are $10 and can be purchased here: p2p.onecause.com/otters22.
Milestone HCQU West offers many trainings on seizures including self-studies, online webinars, in person trainings, as well as fact sheets. Take some time this November to learn about epilepsy and seizures and spread awareness.
National Epilepsy Awareness Month 2022 Cover Graphic provided by The Epilepsy Foundation www.epilepsy.com
