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The love of my life was diagnosed with epilepsy at just five-years-old. He became familiar with emergency protocol and nasty pills crushed up in vanilla pudding long before most children even know what a neurologist is. Our life as a couple began nearly six years ago, and since then I have learned a lot about the disorder and the factors surrounding it. Whether you are trying to connect with a friend reeling from a fresh diagnosis, have a child with epilepsy, or just want to get to know the condition a little better, there are plenty of resources here and all over the internet. Epilepsy—like many neurological disorders—is a condition with a huge spectrum of severities and symptoms, and not everyone will have the same experiences. That being said, below are 10 things that are nice to know while loving someone with epilepsy.
1. Many people with epilepsy will have an odd feeling before experiencing a seizure.
While seizures can be unpredictable, many epilepsy sufferers have various warning signs of possible seizures. Warning signs that Jay experiences include confusion, headaches, and feelings of detachment. Other people will hear ringing or experience unusual smells. Be sure to note any warning signs that you or your loved one noticed before a possible episode. For more information on possible warning signs of seizures, you can visit the Epilepsy Foundation's Warning Signs page, here.
2. Long-term effects of many epilepsy medications include tooth decay.
When Jay and I first got together, he never liked to smile with his teeth. I soon found that the Depakote and Zerontin that he has been taking for nearly two decades have effectively deteriorated a good amount of his tooth enamel. Despite being good with brushing and flossing, Jay is prone to cavities and is scheduled for an upcoming root canal in July. Because of this, it is important to stay on top of dental hygiene. At the end of the day, Jay and I agree that even the most painful and intensive dental work is preferable to seizures.
*Sidenote: Jay had a doctor who once recommended that he drink energy drinks like Monsters and Rockstars like coffee, as the caffeine and other substances supposedly help with seizures. This further contributed to Jay's dental issues, and any evidence of them being effective was coincidental at best.
3. Sleep is crucial.
This one shouldn't come as a surprise, as sleep is incredibly important to the brain, and epilepsy is caused by disturbances in the brain's electrical activity. I would encourage those caring for people with epilepsy to plan out early mornings carefully and get your full 8 hours at night. This works at both ends, as Jay will begin having petit mal seizures when he begins getting sleepy at night. That is a sign that it is time to get into bed and give that big, beautiful brain some rest!
4. Keeping the house tidy can be a real benefit.
This one is coming from someone who fully embraces the "it's messy because people live here" mantra. That being said, there are many benefits to keeping a clean house. Everything functions a little smoother, and someone who looses consciousness from epilepsy runs a lower risk of injury. Jay dislikes the notion of even have a bedside table, since his seizures used to occur in his sleep and cause him to fall to the floor, hitting anything that was there on the way down. When you consider your loved one as a possible fall risk, it isn't hard to get motivated to keep objects neat and off of the floor.
5. Timing can be everything.
Jay's type of epilepsy includes grand mal seizures, typically taking place just before or after waking. This means that he is most vulnerable to these sometimes devastating convulsions in the early morning. Pranks are all in good fun, but scaring someone awake who has epilepsy is not a good idea. The combination of elevated heart rate and tiredness can push the brain into a seizure.
6. There are triggers that you may not expect.
Most of us automatically think of flashing lights and video games when thinking of the trigger of a seizure. However, steam, noises, and even shadows have also been known to trigger seizures. Jay avoids hot showers in the early morning so that steam won't build up around him while his brain is in a groggy state. He wears sunglasses around sunset or sunrise so that the shadows of trees passing by as we drive won't mimic strobe-lights too strongly. Everyone is different and will have different triggers, so it is important to pay attention to how your loved one is feeling so that you can identify them.
7. Always communicate.
As in many aspects of life, communication is key when nurturing a close relationship to someone with a (usually) life-long illness. A simple "hey, I'm not feeling too good," can truly mean the difference between spending the night in your own bed or in a hospital room. It is important to have open communication on the subject of the illness, both to family members and your trusted medical professional. The medication schedule should not be dropped for any reason, and let's be honest; everyone gets a little overwhelmed and allows the proverbial ball to drop sometimes. Having another person around as a walking and talking reminder is never a bad thing.
8. Keeping a journal is recommended.
Medical professionals strongly encourage keeping track of what is occurring and when with most illnesses, particularly epilepsy. I myself am a very visual person who really benefits from having an entire notebook dedicated to the subject. Here I can write out medication calendars or changes, record any seizure or seizure-like instances, and keep a tab on Jay's triggers. I even use it to jot down notes when I learn new things about epilepsy. This is very nice to have if your loved one has to be admitted to the hospital.
9. Marijuana helps tremendously.
Jay would have at least the threat of a large seizure on Christmas every year—until after he began smoking marijuana. The cannabis compound CBD has been known for offering patients of all different types relief from neurological illness. CBD can also counteract the more psychoactive effects of marijuana, so if you would like to try this out without getting high, there are many of options. New laws have planted dispensaries throughout certain states, making this type of self-medication easy to try.
10. Epilepsy is connected to emotional state.
According to the Epilepsy Foundation, people with epilepsy are much more likely to suffer from depression and anxiety. These will also intensify the condition, as stress is one of the biggest triggers of seizures. Staying in touch with how you are feeling emotionally can be a huge indicator of how your day is going to go. Remember, you cannot pour from an empty cup! It is ALWAYS okay to take a break if you aren't feeling well, and your brain will thank you for it.
11. NEVER put anything in the mouth of someone having a seizure.
Despite the ridiculous notion that someone will "swallow their tongue", it is actually incredibly dangerous to shove a wallet in the mouth of someone seizing. This increases the odds of choking and a broken jaw or teeth. The best first aid to provide to someone having a seizure is to attempt to prop them on their sides and keep them from making contact with any nearby objects without restraining them. Holding someone down while they are having a seizure puts both them and you at risk.
12. The after effects of a seizure can be embarrassing to the sufferer.
It is vital to stay calm and collected during a loved one's seizure, but how you treat them afterwards matters a lot too. If your loved one has a grand mal seizure, they will most likely have wet themselves. It can take several minutes to emerge to full consciousness, and during this time they may be making noises. If they hit anything on their way down, they may have cuts or bruises. The situation can feel terrifying and uncomfortable, and it provides a huge comfort to simply be there and non-judgmental for your loved one.
Epilepsy is a tough illness, but tough things are beaten by knowledge and love.