Spreading the Word

I'm a guest blogger! To spread the news of Epilepsy Awareness, I was asked to create a blog post for my friend, Rachel's blog, "Third Stop on the Right." You can see my post, here.

Learning

"Look not mournfully into the past, it comes not back again. Wisely improve the present, it is thine. Go forth to meet the shadowy future without fear and with a manly heart." - Henry Wadsworth Longfellow




I know I said I was going to post yesterday, but I needed time to decompress.

Dave and I met with Dr. L. yesterday to get a more in-depth understanding of what my condition really looked like.

She explained that there when a baby is in a mother's womb all of the synapses for the brain are located near the brain stem. After the baby is born, the synapses move to their permanent location of the edge of the brain. It is why the outside of our brains are bumpy. There is a small section of my brain where this didn't occur. This is why I have seizures. The true and definite reason why. She said that the is the reason for my slower fine motor skills and bad vision (I could have told her that).

Dr. L. told us that I am lucky that this happened when I was very young. My brain was able to re-route so I was able to learn and be self-sufficient. It is different from being a 70 years old and having a stroke and not being able to re-learn old habits and simplicities.

This opened my eyes to show me that I truly am one of the lucky ones.


There was other news that she told us, but I don't know if I'm ready to share it just yet.

Not-So-Sweet Dreams

Lately, I've been having incredibly vivid and horrible nightmares. The type of dreams that when you wake up in the morning, you have to make sure that the events didn't actually occur. They make you run around the house checking on family members, calling friends and bringing out valuables that you thought were lost forever. These dreams have been terrifying and, truthfully, I haven't slept well in about three consecutive weeks.

After doing some research, I found out that these dreams could be yet another side effect from the Lamictal (see, I told you I'd want to talk about side effects, again). I found numerous blogs that describe the same type of dreams after starting the same drug. Some people say for them, they never went away and others say that once the drug became therapeutic, the nightmares eventually fade. I hope I'm the latter of these two.

Between the RLS and random anxiety attacks, adding this to the list makes me feel like this:

Dave and I are going to visit Dr. L. tomorrow. Hopefully, she can shed some light on what's going on. She wants to go over my MRI results in person. She's going to show us the images of the MRI and explain to us exactly what it says and what the plan is moving forward. Also, she is going to give me the results of my recent blood work and confirm where all of my levels are at.

I'll have more on that tomorrow.

Unusual Side Effects Part 1

This is going to be a quick side note. I titled this "part one" because I'm sure this won't be the only time that I will want to discuss this.

Since starting the Lamictal, I've had a series of side effects that I never got while I was on just Carbamazepine.

Everything from my tongue feeling ticklish to numbness in my hands to cramping to RLS (Restless Leg Syndrome). The RLS seems to be the only one that is sticking though. It's infrequent, but happening about every other day. It makes me feel like my leg is completely asleep and like I will have to drag it to get from point A to get to point B - but then, I can move normally. How strange...

It's actually starting to piss me off today. We are starting the holiday season at work and I just don't have time to feel uncomfortable.

Dr. L. said that once the medication switch is over and that I'm fully off of Carbamazepine that the annoying side effects should subside. Hopefully, that is true.

Blood, Some Sweat, No Tears

8:30 a.m. - I went to Quest Diagnostics in order to get my routine blood work done. They took blood for a CBC, TSH, A1C, Comp Metabolic Panel and a Carbamazepine Level. Getting blood taken never really bothered me like it does for some people. It doesn't really hurt, is over in seconds and gives me a view of my health that otherwise, I wouldn't be able to see. I've seen patients lose their stomach the second the needle touched their skin. I should have the results of all of this in the next few days.

1 p.m. - I had my yearly physical today. I had it with the P.A. in the office rather than my usually GP. She was very nice and made me feel comfortable. I gave them Dr. L's plan to change my medication. She looked at the paper like it was in German, at first, which is the same look I had when I first read the very detailed instructions. I explained that Dr. L was weaning my upward 50mgs at a time, each week for 6 weeks, of the Lamictal first, then after 6 weeks and the medication was therapeutic, weaning me down 200mgs at a time of the Carbamazepine until I was only on the Lamictal. I had to have that explained to me three times before I actually understood.

For the rest of my physical, she asked about my health and eating habits. Since I have symptoms of PCOS, she wants me to get back on a healthy lifestyle track and lose about 15 pounds. She said that by doing that, my symptoms may lessen and so might my acid reflux. In other words, I will just feel better.

Here's to taking another baby step to getting on the right track.

Answers

My husband and I moved back to Pennsylvania two years ago and knew that we were quickly approaching the time when we would begin seriously thinking about children. In order to prepare, I made appointments with a new OB/Gyn and GP (both of whom I now absolutely love). We were living with my in-laws and saving for a house, at the time. Once we purchased our first home together, I began searching for a new neurologist.

I always knew that having children would have a few hurdles for us since I was on anti-epileptic medications. I had scared myself stiff by researching the side effects that Carbamazepine can have on pregnancy. Words like spina bifida, cleft palate, and cerebral palsy swirled in the back of my mind as we thought about our future family. I wanted to do everything I possibly could to make sure that our family would be safe. The Antiepileptic Drug Pregnancy Registry comes out every year with new case studies of the percentage of malformations are made from taking certain drugs. The Spring 2012 list currently looks like this:

I found a great doctor (Dr. L) who is excited for us and decided to be incredibly assertive in her treatments. She ordered an EEG and MRI to get the most updated information on my conditions. She is switching me from 800mgs of Carbamazepine to 350mgs of Lamictal, which she referred to as "the safest drug for women who want to get pregnant." I will also be taking 3mg of folic acid and a calcium supplement. Dr. L. seems extremely positive.

She called me last night to give me the results of the EEG and MRI:

EEG: Normal. She said that she saw no "seizure activity, period." That's never happened before to me. I was ecstatic to hear this information. Dr. L. said that she didn't even see background noise during test.

MRI: Diagnosis: Congenital abnormality. That sounds way worse than it actually is. Basically, it means I was born with this. It's a condition that may or may not cause seizures. In my case, it caused seizures when I was little, but my doctors acted quickly and got me on the correct dosage to keep me safe. It's nobody's fault. For years, I believed that my seizures were caused by a lesion that was formed on my occipital lobe due to a car accident while I was in utero. That isn't the case. In fact, it's quite the opposite. Ten of every 1000 births can result in a congenital abnormality. It isn't genetic and can just happen. This is what caused my seizures. Finally, answers. Dr. L. said as long as I'm on a low-dose of anti-epileptic medication, I should never have a problem, again. Here's to great news!

This makes me feel amazing. It lets me know that these are just the cards that God dealt me and that it was my fate. God never gives a person more than they can handle. This is just the journey that I was meant to take. This was meant to make me stronger.

....And it has.

Starting from the Beginning

My name is Kathleen. I was diagnosed with partial complex seizures when I was only a toddler. My last seizure was in 1992, however, I will always need medication to control them. For the past 20 years, I have been taking Carbamazepine.

I married my best friend in the world, Dave, in 2009.

After three years of married bliss, we are thinking of starting a family. My neurologist is switching me to Lamictal, an antiepileptic drug that is safer for me, especially during pregnancy. This blog will be used to document the ups and downs, discoveries, experiences and changes along our path to parenthood and daily life.