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!

Collateral Seizures

I had every intention of updating this blog every time that we experienced the ripple effect this seizure condition, but it probably won't happen that way. The mental and physical exhaustion that comes with having seizures tends to wipe us out for a few days, and often leaves me in tears. Three years later, and I'm blubbering like a baby.

Generally, Adam's seizures happen during the night. Often, we can identify a trigger, but sometimes we can't. He wakes me up when they start and I go into Seizure Control-mode: I turn on the fan, pull the dog away from him (in case he kicks, also to cut down on body heat), pull the covers off, remind him to breathe, and get a wet, cold washcloth for his head.

It's over within a few minutes, sometimes closer to fifteen. Those are the hard ones... the ones that last a long time, while he's whining and crying and hurting. Those are the times I cry.

But there's so much more that happens, even after the physical seizure is over. Generally, he'll be able to calm down and relax back into sleep. I lie awake most nights, trying to turn off my brain. Since Adam doesn't work, he can usually sleep in the day after a seizure. I have to get up at 7:00 am the next morning, whether we were up late or not. This usually leads to me oversleeping.

Each time this happens, it's as if we each get a slap in the face that our lives will never be normal.

This is the "collateral" part of the seizures. Much like the seizures can't be controlled, the ripple effect reaches all other parts of our lives.

I know that I signed up for this. I was only dating Adam for for a couple of days when he revealed the life-altering story that left him with this condition. Maybe he told me to warn me, so I wouldn't be caught off-guard when it happened. And since then, it's been Adam and I Against The World.

And so that's why, even though some days I go into work bleary eyed, tired, I know that Adam has gone through so much more- and I know that we have to find a cure, Adam's cure. There's not a cure to fix everyone, but there's gotta be a perfect combination for him, and I WILL find it, because I believe it's out there.

Welcome to Seize the Day!

Hello, and welcome to Seize the Day. We are Adam and Laylan, a twentysomething couple living in the Midwest. We have started this blog to attempt to chronicle and unravel the mystery of Adam's epilepsy which he has had since he was sixteen years old. To have a full view of where we are today, we should go back to the beginning...

Adam is the youngest of four children born to a college professor father and a music teacher mother. On June 2, 1994, a dump truck collided with their car on the passenger side. Adam's mother passed away instantly, and Adam was trapped in the mangled car as he was sitting behind her. He was in a coma for five days and was diagnosed with a Traumatic Brain Injury. As he was only eleven years old, no one was sure the impact that this injury would have on his life.

When Adam was 16, he experienced his first seizure. His seizures vary from mild to severe and are classified as post-traumatic stress, clonic seizures. (I've seen them also called grand mal seizures, but I don't think he fits that completely) Adam is 100% conscious during the seizures, but has jerky convulsions, "lightning bolt" pain, headaches, and his body temperature rises. They can last anywhere from 3-20 minutes. We treat them with cool air, cold washcloths and breathing exercises.

When I met Adam in 2009, he was having seizures weekly. He was also smoking cigarettes and drinking beer nightly (it was summer!). As we started dating, both of these behaviors decreased, and so did his seizures. I also read online that potassium helps with seizures so we introduced potassium supplements to his daily pill regimen along with Carbamazepine and Zonegran. These lifestyle changes have attributed to a reduction of the seizures to only about one per month or less. (For awhile we were six plus months seizure free!)

Sometimes, Adam has seizures and we can identify the trigger. It can often be cigarette smoking or drinking if he's gone out with friends. It could be if he's eaten too much and his stomach isn't feeling well. It could be being jarred from a dream. But other times, there is no trigger that we can identify... which is why we've started this blog. We hope that we can chronicle and reach out to the traumatic brain injury and epilepsy community to share questions, praises, triggers, and solutions. I've been so frustrated with the lack of information related to seizures and TBI's online- I hope that we can bridge the gap together!

I hope you'll join us for this journey- I dream of the day that Adam can go years seizure-free.