Feeling Good

It's been over 6, almost 7 weeks since my last "microseizure." I've had no flashes, no inkling of anything. *knocks on ALL the wood* I feel great. I really think we figured out what was causing them. My triggers were low blood sugar, lack of sleep and the flickering of light that strains my eyes.

I wear my sunglasses literally every time I go outside. Even if it's a grey sky. I wear them until about 6pm. After that, the sun has set low enough that the reflection isn't bothersome. I think that has made a huge difference. 

I'm constantly eating, haha. As I'm typing this up, I'm actually eating peanut butter and crackers. Thinking back, a lot of my flashes occurred when my blood sugar was low. The longer I waited and the hungrier I got, the more likely I was to get a migraine or worse. Speaking of migraines, I haven't had one in months, which is a miracle for me.

As for the lack of sleep, I'm realistic about what I need now. Just because I can run on 5 hours of sleep doesn't mean I should. I average about 7.5 hours of sleep every night except for when Colin wakes up. He's been great though, except when we go stay at my in-laws. He doesn't sleep there. Ever. Never has. It's rough, so I need to be healthy so we can stay home and not stay there anymore and get some normalcy.

I'm also in a better place. I'm happier. I love my life and my family. I'm so lucky to have them. I have started enjoying life for once. I preached for so long that epilepsy was just a diagnosis and not a lifestyle and unfortunately, I didn't listen to my own words. I let it get to me. But not anymore. This is my life. This my path. And I'm going to enjoy every minute of it.

Chin up, friends :)

Ernest Hemingway "Broken"

We are all broken. That's how the light gets in. - Ernest Hemingway, American author, 1899-1961

Neurology appt

Dave and I went to go see Dr. L today. We went to try and figure out a new game plan for me since I was having such severe weight loss and the episodes. 

She did some tests (normal finger tapping, walking back and forth, etc), took my vitals (BP was 110/59 - which is OK but low for me) and weight (128.4 with clothes on, so about 30 lbs lost since on the Zonegran). She asked Dave a lot of questions. He's a better judge than I am with this since he's the one witnessing it. 

The only thing that I could be honest about is how I'm feeling. She asked me if I'm feeling stressed or depressed and I answered honestly. I'm overwhelmed. I'm sad. I'm stressed. I'm worried about so many things. I'm crying a lot. I'm all the above and more.

And I've just got to figure it out because I can't take anything for it. I know Dave is there for me through this. I know Colin loves me. No one has to tell me that. And I know I have to be strong for my family. 

What Dr. L essentially told us is that I've been having microseizures (not PNES). They are lasting less than 30 seconds and usually brought on by light (reflective) and stress. This is so incredibly disappointing. I really thought this was under control. 

The plan from here on out is to raise my Zonegran by 50mg 2x a day, monitor my weight and make sure I ALWAYS have sunglasses (*sings* I wear my sunglasses at night…). The Zonegran really has done wonders for my migraines. But the weight loss and the microseizures need to be under control, too.  

This is getting ridiculously long, I know. 

I need to "man up" and be strong. I need to take this head on and do the things I need to in order to be healthy and happy and to keep my family healthy and happy.  I need to start wrapping my head around this. 

I also need to come to terms with the fact that Dave and I probably won't conceive again. Colin is amazing. He is perfect. We love him more than anything.  But the risk of going through another pregnancy and having my physiology change again, and then having the potential for more seizures, is high. We would have to talk about adoption if we wanted more. It is very hard to hear someone say that you aren't ALLOWED to do something as opposed to CHOOSING not to do something. It's a big pill to swallow.

This turned very disjointed,  I'm sorry.  There's a lot in my head. You're probably going to be hearing from me a lot lately. 

CS Lewis "Hardships"

Dave is amazing. He knows what I need to hear, at the exact moment when I do.

When I was at work today, he sent me this. It's a quote by C.S. Lewis (British Novelist/Poet). 

Any hardship that comes, we will face it together. We will build an amazing future and keep moving forward. This is a bump in the road, not the end.

Jumping Back In

I never finished that last post. Life picked up at an alarming speed.

Colin turned ONE and has been absolutely keeping us on our toes. He's changing every single day and sometimes, it's hard to even keep track of all the new things he's learning. 

(I'm doing this on my phone, so I'm pretty sure that picture is massive - sorry)

The reason I'm updating is because I've decided that I'm going to begin to update this regularly again (or as much as I can with a toddler, ha).

I don't think in the last post that I put that they put me on a new drug in the hospital along with the Lamitrigine ER. I'm now also taking Zonisamide 100mg 2x daily. It's funny I tell you this now because my neurologist and I are going to discuss me switching to something else on April 6th.

Since being on it, I've dropped 30 lbs (this sounds like something weird to complain about but when you're losing 3 lbs a week for no reason, it's scary), my hair is falling out in clumps and I'm still having PNES episodes. They happen probably about every 4-5 weeks and are brought on by stress. Definitely time for a change.

I'm scared to change again. I don't want to switch and have another seizure. I can't go through that. I can't put my family through that. But, my neurologist (or at least Nurse Gary) seems really confident that the Zonisamide is the root cause for the PNES episodes and all he other symptoms and once I switch, that it will all stop.

I really am crossing all of my fingers and toes on this. 

Finally Facing It Part 1)

I've put off this post long enough, I didn't want to write it because if I did, it meant that all of this was true and not some horrible dream I'm having. Why can't this just be a horrible dream I'm having?

-----------------------------------------------

On June 6, 2014, while I was at work, I started experiencing some auras and was feeling a little dizzy. I went into the bathroom to put my head between my legs and try to collect myself. I did my breathing exercises and was trying to take hold of the situation, but it was too late.

I felt like leg go and I began having seizure-like seizing (more later on why I word it this way). It lasted for about 3 minutes and after it was over, miraculously, I got up, I called my family to come get me from work, told my boss I was leaving and acted like nothing happened.

I still didn't feel right though. Something still wasn't right.

My father-in-law got me. On the way home, he kept asking how I was feeling. If we should go to the hospital. It wasn't until we got near the exit to our house that I told him that I thought I was going to have a seizure and that we should go to the hospital. We got Dave (the hospital is 250 yards from our house) and then it started.

It lasted about 20 minutes. There's a lot missing. However, I remember thinking, "Why isn't this stopping?" and the seizing was more in my groin and that hurt more. I remember my father-in-law telling me to "settle" and thinking, "I can't." I was admitted to the hospital and was there for 2 days. There's a lot missing from those 2 days. I have disjointed memories. I remember random specific things like thinking that the idiot nurse we had looked like Andy Dick and that before I went to sleep I watched an episode of "King of Queens" with my mom. It was a weird experience for me.

One of the doctors at the hospitals explained to Dave and me that what happened at work probably wasn't a seizure, but more likely a "warning shot." Something called Psychogenic non-epileptic seizures (PNES). They aren't necessarily seizures, but present the same symptoms without the brain charge that an epileptic charge has. They are common in people with people who have complex partial seizures.

It's now January 3, 2015 and I'm still seizure-free. 

To be continued...

Whatever you do, you need courage...

"Whatever you do, you need courage. Whatever course you decide upon, there is always someone to tell you that you are wrong. There are always difficulties arising that tempt you to believe your critics are right. To map out a course of action and follow it to an end requires some of the same courage that a soldier needs. Peace has its victories, but it takes brave men and women to win them." - Ralph Waldo Emerson, American Poet and Essayist, 1803-1882