Why epilepsy matters to me // A personal post

I never used to know that November was epilepsy awareness month. Matter of fact, I didn’t even know anyone with epilepsy, nor had I ever seen someone have a seizure.

I want to share a personal post with you all - not to draw any sort of attention to my family, but rather to raise awareness to a disease that effects my family and to educate others on epilepsy and how to help someone if they are having a seizure.

Here’s our story.

In 2011, I was woken up to my husband having a grand mal (tonic clonic) seizure. It was the scariest thing I’ve ever seen, and I had no idea what to do besides call 911. The dispatcher was amazing and calm and I’m still grateful to her to this day. When the firefighters and EMT arrived, Neil wasn’t seizing anymore, but he wasn’t awake. They put smelling salts under his nose and he bolted up. This is what shocked me - my calm, non-aggressive husband started fighting those six men. I was in shock. His behavior was out of wack for a good 30 minutes. I later learned this is what is called the postictal phase after a seizure, but I’ll get into that more later. The ambulance raced off to the hospital where Neil had several tests. I remember the doctor telling me he didn’t have a brain tumor, and my ignorance was bliss because I hadn’t even considered that at that point. The doctor gave him “medicine so he won’t have another seizure”. Come to find out they put him on anti-convulsion meds.

Neil’s recovery from the seizure was rough. He was exhausted and sleeping for the majority of the day. His body was sore. His short term memory took a huge hit. He couldn’t drive for 6 months (Michigan law). It was about a week before he felt normal-ish. And doctors had no idea why this happened.

We found a neurologist and she thought it was a fluke, random thing. So she let him wean off the meds the ER doctor put him on. About three days after he was completely weaned off, he had another seizure in his sleep. At that point, his neurologist told him he’d be back on his meds.

Five and a half years passed and he didn’t have a single seizure. He felt great. Meds were working and honestly we didn’t think much about it.

Then 2016 came. Seizure in his sleep again. Back to the neurologist we go. She ran some tests, and didn’t see anything. MRI, EEG, 48 hour EEG, all the things. Everything came back normal. The brutal week recovery and no driving for 6 months was back. After more appointments with the neurologist, she told us she didn’t know what to do anymore. So guys, I prayed to the good Lord for guidance. My anxiety was out of control at this point, I was having difficulty sleeping at night with every peep my husband was making thinking it was a seizure starting. I called The Epilepsy Foundation of Michigan and spoke with the kindest woman. She was beyond helpful and knowledgable, and she told me to drop the neurologist and go see an epileptologist, a doctor specializing in seizures. She gave me the name of Dr. Nikesh Ardeshna. I felt like we could get somewhere! I called his office and he had a nine month wait… nine months. I called everyday asking if there were any cancellations (sorry to the lady that answered the phone each day!). We ended up getting in within a month and this doctor blew our socks off. He spent over an hour with us, writing down every detail of what had happened to Neil. He showed us compassion and that he really wanted to help. We were amazed, shocked, grateful. Thank you Jesus.

From mid 2016 - 2017, Neil was having seizures every 4ish months. He didn’t drive for 15 months. He repeatedly had to go through the week long recovery phase, struggled with memory issues and so forth. After each seizure, his med dosage would increase to see if that’d help. He maxed out the dosage and was having side effects.

Dr. Ardeshna mentioned the option of Neil going to the Epilepsy Monitoring Center (EMU) in Royal Oak. It is a 5-7 day stay in the hospital where they take you off meds and sleep deprive you to try and cause seizures, so they can get all of the data on it while you’re hooked up in the hospital and learn to possibly better treat you. It sounds terrible, right? But all for a good cause. And you better believe my data collecting engineer husband wanted alllll the data. From the stay we learned that Neil’s seizures started in his frontal left lobe. After the stay, his doctor changed his meds and we felt optimistic.

Unfortunately Neil had a seizure a couple of months later, but a partial seizure and not a grand mal. It was a seizure that effected only one side of the brain and not as extreme as a grand mal. His recovery was only about 3 days instead of a week. Honestly, we were so grateful for that in itself. But at that point, the doctor told us that typically if three different epilepsy meds don’t control it, likely nothing will. Neil was discouraged, I was discouraged. He added a third med on top of his second med. We are happy and grateful to say that Neil will be one year seizure-free on November 22!

Here’s how epilepsy impacts my husband.

Neil has had to make lifestyle changes.

-Regular, full night of sleep.

-Limited/no alchohol

-Stress management

-Balanced diet(ish)

-Meds twice a day, on time

-Business travel had to stop for his own safety

-When driving was taken away, managing rides, Uber, etc. Neil still says to this day this was the hardest for him! Throughout those months, he had two of the most self-LESS co-workers pick him up and take him home on the regular. These guys were saints, and became close friends of Neil.

Here’s how epilepsy impacts me.

-I’m his partner, and his main squeeze. When Neil is recovering and for a month or so afterwards, I’m his memory help. Researching things, meds, appointments, etc.

-I’ve struggled with managing anxiety.

Here’s how epilepsy impacts our daughters.

-Our oldest has been taught about seizures and what to do if that ever happens.

-Whenever we go somewhere (vacation), we remind our oldest about it in case it happens. We also try and stay in hotels that are suites so the girls are in a different bedroom.

-The two meds that Neil is on cost over $2,000 a month. But you know what, its worth it.

Seizure FIRST AID:

Keep other people out of the way.

Clear hard or sharp objects away from the person. Place something soft under his head.

Don't try to hold him down or stop the movements.

Place him on his side, to help keep his airway clear.

Time the seizure. Typically seizures last 2-3 minutes. If it is a person with epilepsy, call 911 if the seizure lasts 5 minutes or more.

Don't put anything in his mouth.

From my own experience, after the seizure and the person is waking up, it’s kind of like watching their brain re-boot. It takes awhile to form words or make any sense, and they can be aggressive. I’ve found it works best to talk calmly and in a quieter voice.

Thank you for reading this if you made it this far!

Epilepsy is kind of an invisible disease in a sense. You never know how people are feeling after a seizure, what their recovery period is like, how their meds effect them, the struggles they have with their memory and so forth. The seizure itself is such a small part of it. And please remember that people with epilepsy are just like anyone else - they don’t want to be treated differently because of an illness they battle. Neil and I are both forthright when talking about epilepsy and his journey with it. Feel free to ask questions if you have any, we are happy to chat!

Lastly, I have to mention we have had and still do have an incredible support system. My parents who live across the state dropped everything to help us multiple times with doctor appointments, week long stays at the hospital and so forth. We also have an amazing friend group who helped babysit the girls throughout various appointments and testing, brought us meals and just loved on us. There is a lot of other family and friends who just prayed for Neil, which to us is equally as important. Thank you, thank you, thank you for your support. You all know who you are.

-Chelsie