The Emotional Toll of Epilepsy

It’s 8:15 on a Friday night, and we’re sitting in the Emergency Room of our local hospital. This isn’t our first Emergency Room visit, and it won’t be our last. I guarantee it. And it’s not that I mind being here with my sweet husband on this night, it’s that my heart breaks for him and what he’s gone through to put him here.

Adam has epilepsy, which developed after a tragic car accident when he was eleven years old. The words- which I have repeated to doctors, nurses, friends and family over the last six years- are easy to say. Traumatic Brain Injury. Seizures. Treated with medication. Triggers. They’re easy to say, but what’s not easy to convey is the all-encompassing, overwhelming existence that is life with epilepsy. There’s no way that anyone can fully understand or sympathize with the pain that my husband feels.

But we’ll get to that.

The reason we’re sitting in this Emergency Room is that my husband had a mini seizure- a “twitch” is what we have termed small spasms that drop him to his knees. This has happened before- but this time, when his legs turned to jelly, we were walking the dogs. I saw it happen- in slow motion, maybe- he looked twice and started to cross the street, and his legs were gone from beneath him. The leash clanked to the ground and the dog was startled. My husband fell hard onto the asphalt, and his head crashed against the street.

I rushed to help him up as a neighbor looked on from his driveway. The tears started flowing immediately, both of us. He limped home and as he was washing his face, he looked at me and said, “Some days, I just feel like giving up. I’ll never be able to do all the things I want to do. “  I didn’t want to upset him further, but this was the first time he articulated what he was feeling about his seizures- and I admit that I have felt it some days, too: Sometimes, the pain and reality of this horrible condition seems to be too much… insurmountable.

If I have learned anything from my husband, it’s to get up and keep going- every day. Adam always has a smile on his face, and it’s only in these rare moments that I see how much living with epilepsy affects him emotionally.

Adam is the strongest & sweetest person I know. Strongest because he continues to live his life without becoming jaded or sad about his circumstances or the situations he’s been through. Sweetest- because he wakes up every day with a smile on his face, and something tells me that no matter what happens- he always will.

Graduation Update!

Happy 2015! Every time I promise to update more, life gets in the way! However, I have great news to report going into 2015.

Adam graduated with honors on 12-13-14 with his Bachelor's in Sociology! I can't explain how very proud I am of Adam for his amazing accomplishment. When he enrolled in school 4 years ago, we had so many obstacles to overcome, and questions to answer. How would he get to school every day? How would he handle the course load? How would he take notes? What happened if he had a seizure on campus? Throughout his four years, we revisited those topics more than once-and persevered through everything that came our way.


Adam and I on Graduation Day!

Now that Adam  has graduated, he is actively job-searching for a position in social services and/or nonprofits. He has a passion for helping people, sharing his story and aiding his community. He has filled his days with volunteerism with the United Way and The Senior Center, and this Christmas he worked with The Angel Tree program. Adam feels that giving back to his community is a great way to share his talents, and I agree! He's definitely keeping busy!

One more big announcement: Adam is going into 2015 SEIZURE-FREE! He hasn't experienced a seizure since sometime in December (with all of the excitement of graduation, we haven't kept track!) We credit this drop in seizure activity to less stress since school is over, more sleep, less carbs (we have been cutting sugar & the majority of carbohydrates from our diets), and finally getting his medication dosages right.

2015 is going to be a big year for us, but especially Adam! We look forward to all of the opportunities that are coming his way. It's hard to believe that we have been together nearly six years and married for 18 months!

Adam is a prime example of the amazing things you can do when you push yourself to follow your dreams and live your life, regardless of disability or the obstacles that crowd your way. Stay tuned...it's going to be a fun year!

Laylan & Adam

2014 Update: Never Stop Advocating!

It has been over a year, but I promise to be updating more soon! In fact, Make sure to "follow' this blog or bookmark it because things are going to be moving forward in exciting ways!

2014 was our first full year of marriage and it has been amazing, but we have been dealing with some unexpected health issues. My mother went through open heart surgery in February which really got us thinking about our own hearts and how to be more healthy.

In April, I got a call from a friend that Adam had experienced three seizures at the university and was en route to the hospital for evaluation. I was nearly there when I got a call from the EMT: He had progressed into a Grand Mal in the ambulance and had to be sedated. They took him to Centerpoint, which is about 45 minutes away and has a neurologist on staff.

During the evaluation, they found that Adam has a heart condition: hypertrophic cardiomyopathy. Adam's valve is not working properly and his heart is beating very hard trying to push blood through the other valve. Currently, they are treating him with a beta blocker, but encouraged him to lose weight and to monitor this- he will likely have heart surgery in the future.

In other (happier) news: Adam will be graduating with his Bachelor's in Sociology on 12-13-14! For those who personally know Adam, this is such a huge achievement for him- entering college in 2010 with little knowledge of computers, haven't been in school in over ten years, and now doing college coursework. He plugged away and has earned his degree in just four years! I am insanely proud of him!

He has also been volunteering with the United Way, single handedly hosting a Cold Weather Drive and he has collected 108 coats, scarves, gloves, hats, and sweaters for the local community.

As we look toward the future- life after graduation- I look forward to what Adam will do with his life. Stay tuned for more updates as we transition into a new chapter in our lives!

The Good Life

So much has happened since our last blog post! First, we got married on September 28 and it was the perfect day. Secondly, because we got married, I was able to put Adam on my work insurance and he cancelled his outrageous monthly policy. It ended up only costing me $100 per paycheck ($200 per month) to add him, which was a far cry from the $582 he was paying monthly,  plus the cost of his medication!

And now for some super exciting news: as you may recall from the last blog post, Adam's neurologist had high hopes for a new medication, called Vimpat, for Adam's seizures. We decided to wait until after the wedding to begin the treatment, and Adam started transitioning around October 1st.

Side note: Vimpat is a fairly new medication and there's no generic available. Even though my insurance covered it, we had to complete a Prior Authorization screening and it took several weeks to go through, but we did get him approved. And the best part: it only costs $50 a bottle!

Adam's transition started with weening himself off of Zonegran that he's been on for several years, and introducing the Vimpat slowly for about 2 weeks. This last week was the first week with no Zonegran and only Vimpat and Carbatrol.

We researched Vimpat online before he went on it and noticed that most people claimed drowsiness as their #1 side effect. Others included mood swings, extreme fatigue, double vision. We were most concerned about the drowsiness as Adam is in the middle of a college semester.

Since Adam's seizures happen primarily at night, this was definitely something we prepared for. Adam takes the pills around 9 pm at night and we're generally in bed by 9. He awakes around 7 or 8, usually when I get up for work.

I'm happy to report that Adam has only had ONE small seizure since he started the transitioning (we expected more), but this was also a night that he was out with friends and drank a few beers, so to me, this is considered a seizure WITH a known cause.

The drowsiness has lightened up since Adam continued on the medication , but he has been a little "twitchy", spasms in his arms, legs, randomly and without cause. His phone flew from his hand the other day and he had a dramatic spasm in Wal-Mart yesterday, which worried me. We took care of the business we had there and got home so he could rest.

Other than that, Adam is happy, enjoying married life, feeling good, and working hard at school. This medication has been known to work wonders for Adam's specific type of seizures- "partial seizures", and several reviews online have claimed that those that have taken it have been seizure free for over 2-3 years! What inspiration to us!

As we start this married journey, we are looking forward to having children and possibly even Adam driving! This was never an option, or even a fantasy before- we knew he would never be able to. We are so excited to see what life has in store for us!

Check out my other, non-seizure related blog at (http://pennelforyourthoughts.blogspot.com)! I write about married life, share recipes, and other tidbits of inspiration!

Tonic-Clonic

I haven't updated this blog in awhile because there wasn't much to report. Adam was relatively seizure free, with a few episodes here and there, averaging about 2-3 per month. We visited with his neurologist in July and I discussed putting him on an anti-anxiety pill to stay asleep at night, since his seizures are often triggered by dreams. Adam and I enjoyed five days of fun and sun of our "pre honeymoon" in Florida and returned Friday, August 2.

Then, August 5 happened. 

Adam and I had enjoyed a nice evening at home. I made chicken, we spent some time catching up on the DVR shows we'd missed, and I went to bed around 10. Adam followed around 12. About an hour later, he started having a seizure. I woke up and got the cold packs that we use, made sure he was comfortable and noticed the time on the clock. 1:12 AM.

He asked me to talk him through it and I did, picturing a bright blue sky and helping him breathe. I was standing next to him when his body went rigid. He was headfirst into his pillow and then, I could see the movement escape him. "Adam?" I said, shaking him slightly. "ADAM!" I started yelling at him, shaking his shoulders. He was dead weight to me in my arms. I turned his head/body over when, to my horror, I saw that there was a bright path of blood leading out of his mouth. My own blood went cold. This wasn't right. He wasn't responsive. I rolled him on his side, and could tell that he was breathing, which I knew was the only good sign.

I grabbed my phone and frantically dialed 911 at 1:29 AM. I was already in hysterics when the dispatcher answered. "I need an ambulance! My fiance had a seizure and now he's unconscious!" The dispatcher tried in vain to calm me down. She asked if he was diabetic. Had he had a stroke, she asked. Is he breathing? Yes. Address. Name. Spell your name. What's his name? How old is he? Does he have a brain tumor? No, not that i know of.

It seemed like forever. "What's taking so long? We're just down the street! Please, send someone now!" As I waited, watching helplessly as his seizure progressed, his body pale, still not answering my calling his name.

It occurred to me, now, that I could be losing him.  His brain could have short-circuited, he could have more brain damage, and these damn paramedics aren't even here yet! This all-encompassing panic swept my body. What would I do without him?

The paramedics arrived and I told him that he had seizures, but nothing like this. They acted like I was crazy. One actually said, "It's rare that he could be conscious during a seizure." They kept saying this was normal. I said through tears, "This is not normal for him."

Within about 10-15 minutes, he was coming to, but he could not speak. He looked so very confused- I couldn't help but think something was seriously wrong. He groaned, couldn't form answers to the questions they were asking. Soon, they had him on the stretcher and took him by ambulance to the emergency room. I was to follow once I found his ID and insurance card. I was in such a panic- who was awake at 2 in the morning? Who could come sit with me? What was happening to him, and what could be happening to his brain right now? 

I got lost on the way to the hospital in my crazed state. We live one mile away from the hospital. When I arrived, he was in an ER room, hooked up to cords and IVs and breathing tubes. He was coherent, but looked a little confused at me.

The doctor and nurses were sympathetic but seemed to have no cause for alarm. This shocked me. I have been through hundreds of seizures with Adam and this has never happened. Later, I would find out that yes, he has had less than 5 of these seizures, ever- the last one being in 2009. (This would have been nice to know, babe!)

The ER doctor ordered bloodwork and the nurse cleaned the blood from his face as I sat next to him biting back tears. He reached up and wiped them away, saying simply, "It's okay." That's his favorite phrase- whether I am worried about money, the wedding, work, or him. It's always okay.

Bloodwork returned normal and we were sent home around 4:30 am with the diagnosis of secondary generalized seizure, or a grand mal seizure. He slept until 11 that morning, but I didn't sleep at all. I kept reaching over and checking his heart, feeling his chest rise and fall. I needed that comfort.

Following up with his neurologist today, he was concerned with this seizure and chose to put Adam on a medication that is better for seizures. He said, "Unfortunately, it doesnt come in a generic." Well, how much could it be, I wondered. He gave us a prescription card to keep the cost down, but when Adam returned with his pills, he told me that they were FIVE HUNDRED DOLLARS A BOTTLE.

Now, usually, I'm the strong one (or atleast I think so). I figure it out- no matter what comes our way. But I have cried so many tears this week. I am so mentally and emotionally exhausted. I cant shake the horrible flashbacks of Adam, limp and pale, nonresponsive. It terrifies me to think this could happen again.

So when he emerged with those pills, I freaking lost it. We can't afford $500 per bottle monthly, considering this will be Pill #6 & #7 that he takes daily. He's also, unfortunately, on the only insurance that will accept this pre-existing condition, which costs $600 per month.

But what do I do? I would give anything for Adam to never go through that again. But healthcare shouldn't be something that you have to bargain for!  I am exploring every option available to us, but right now, those are all limited.

I love Adam unconditionally and always have, but this was the most terrifying experiences of my life. Feeling that you could lose the one person that perfectly "gets" you, the one person that you've pledged to spend the rest of your life with, is absolutely the most numbing notion. It freezes me with fear, so I am trying to stay positive.

This situation has reminded me that we don't know how long we have in this life. It makes me rethink those nights I stay late at work. The Adam dates/appointments I've had to cancel or reschedule. No more. Work is work and home is home. Everything can wait til tomorrow. Except for him. He's the single most important person in my life, and he always will be. The bond was have is so deep, something I dont see in other relationships. It's a one-of-a-kind love. We lean on each other, support, adore each other. The love we have is not replaceable, so I will do everything in my power to fight, arrange, and keep him healthy, happy, and alive. At any cost. 

Day of Seizures

It's taken me awhile to write this post because it's taken awhile to process the events and the triggers of Adam's seizures. After I wrote the last blog post (within 24 hours), Adam had three seizures in one day. 

This time, there was no trigger. He didn't stay up late, drink too much, skip pills... but in 24 hours he had three seizures. Two were fifteen minutes or longer ( which I admit, had me both terrified and bawling... this was more than anything we have ever experienced before.) 

The seizures made me feel desperate. Sad for Adam, because no matter what we did, how we breathed, how we tried to lower his body temperature, it didn't work. It just kept going, and going. One of them happened when the UPS man banged on the door to drop off a package. It was a notice knock.. "hey your package is here!" kinda thing. It startled Adam so much that he twitched and his leg was caught on a decorative piece of art that my Mom got us. It tore Adam's leg about seven inches, and even though we doctored it and Neosporin-ed the hell out of it, he has a bright red new scar to add to his collection. 

Adam is a junior in college and this semester he's taking 15 hours. We have registered with the Office of Accessibility Services, so Adam gets a notetaker in each class to help him concentrate. He still takes notes to help himself out, but sometimes it overloads him, and this week, he started twitching in class. I wish I could go to class with him! I'd be a protective mama bear and just walk him through the breathing exercises. I know he panics and forgets everything we've gone over... 

Somedays, the seizures get to me. I put on a brave face for Adam because sometimes, he tells me that he feels like a burden. He's NOT a burden in any way shape or form! I love him unconditionally.. which is odd to say because I truly didn't know if I would ever love ANYONE this way, and I love him  so deeply that I would take away every ounce of pain that he has ever felt. This is OUR battle, and it always will be- a journey that he doesn't have to go alone. I adore him. And I believe we're going to get through this together. 

Seizures in 2013: 5 -- Keeping yearly track for our neurology appt in October! 

Excitement in 2013!

Happy 2013! The new year finds Adam and I especially excited and happy because we're getting married in September! He proposed right before Halloween and we set a fall wedding date soon after.

Adam's health has been steady with only a few seizures since August. We have continued to employ breathing techniques. In fact, tonight we tried something new that I'd like to share.

Around 2 am, Adam started stirring and whining. This is usually the precursor to a seizure. He throws the covers off because his body heat rises. At this point, we can control the seizure and make sure it doesn't progress. I always remind him to breathe because he seems to hold his breath when he starts to tense up. Often I grab a cold towel for his head to bring his temperature down, and we try to talk through it together.

Tonight, I asked him to clear his mind and picture a beach. He replied, "there are too many people on the beach." He always surprises me with how his mind works. I'm picturing a serene beach with the tide rolling in over the sand, he's picturing vacationing, sunburned families. I laughed and said, "Picture a park at dawn." He said that was better and I could tell his breath was more regulated. This is the part that makes me think that his seizures aren't simply a chemical reaction, but also PTSD related. Adam's been through several traumatic events in his life, and he does have a severe brain injury which causes memory loss/lack of retention.

Within a minute or so, I could tell that we were going to be okay. In a lot of ways, I recognize how lucky we are when it comes to the seizures. I've been following some epilepsy/TBI Facebook pages and blogs, and these are tame compared to what some people have to go through. Adam is has amazing strength, even though he doesn't see it that way. This is just how he has had to survive for the past 15 years.

As we plan our wedding and future together, we've talked in detail about how the seizures will affect the rest of our lives. We know that he will likely never be able to drive, although as he progresses that is something we'd like to revisit in the future, if possible. Until then, he's content with cabs and walking!

Several people have quietly asked me how we're going to have kids if Adam has seizures. It's a silly question, really, but I can see how people who aren't familiar with seizures could wonder. My answer is this: we'll deal with it when we get there. Adam always rises to the challenge and I think that he will be a fantastic father. If he needs someone to help out, we plan on having a part time nanny if I'm working, and of course, someone close to call if he has questions or immediate needs. We have a strong support system and I know that we will be just fine.

I promise to keep up on this blog more! I am learning more and more about epilepsy, TBI, PTSD, and techniques that help Adam. and I plan on sharing them in the weeks to come!