Epilepsy

Did you know that early this fall I was diagnosed with epilepsy?

Prior to our trip to China to bring Callie home, I began sleeping poorly with vivid and excessive dreaming and I was having frequent headaches, but I passed it off as stress related to the adoption process. In all likelihood, this was probably stress related, and as any adoptive parent can tell you, the last few weeks before meeting your child are full of stressful moments.

After returning from China I began to have some additional symptoms. Randomly I would have a strong sense of deja vu, but more intense than the fleeting sense of having been here or done that. It was like a dream state in my brain that felt very familiar and made me feel distant. It would be accompanied by a sense that I may lose consciousness, so I would usually sit or lay down, just in case. I did remain conscious and though I could hear and see what was happening around me, I was slow to respond and had a distant look in my eyes. I also became nauseous and had a strange pressure in my abdomen. As the feelings would subside; usually about a minute or two after they began, I would get a headache or a worsened headache and feel exhausted (even more so), like I needed to go right to sleep.

Eventually I became more bothered by these episodes and more curious about what might be happening, so I did what every person who wants to scare their socks off does, I googled my symptoms.

What I found surprised me. When I typed in my symptoms; deja vu, headaches, strange level of consciousness, etc. I found repeated websites describing epilepsy; focal seizures specifically of the temporal lobe. I even found some threads on an epilepsy website where people with Temporal Lobe Epilepsy detailed exactly what I was experiencing.

Ultimately I did go to see my doctor about these symptoms, mostly because the constant headache I’d been experiencing for nearly two months and the poor sleep was making my life a challenge. She was concerned and consulted a neurologist who recommended a brain MRI; it came back normal, which I am incredibly grateful for, since I know the doctors were looking for a possible brain tumor or other structural abnormalities in my brain.

A couple weeks went by and my symptoms seemed to resolve, until one morning, coincidentally the morning of my sister’s wedding, I walked outside to the car in the driveway and opened the back hatch to place some extra clothing and items for the kids in the back. I felt a super strong sense of deja vu come on; much stronger than ever before only this time I didn’t sit or lay down. It had been a few weeks since my last episode but I knew the routine so I leaned into the back of our SUV and figured I would wait until it passed. Only this time it was different. I remember thinking that my symptoms felt really intense and the next thing I knew I was waking up on the concrete of the driveway with a bloodied elbow and a bruised head. I’d lost consciousness and slumped out of the car onto the concrete (at least I am guessing that’s what happened); my fancy updo and my elbow broke my fall.

Surprisingly I felt okay afterwards, so I got up and walked into the house and announced to Andy what had happened (he was getting Callie ready for the wedding and unaware that anything was amiss). Then I called the on-call doctor who instructed me not to drive that day, told me I should probably get an EEG and if it happened again to call 911 or head straight to the ER, but otherwise to enjoy my sister’s wedding. So I did. We had a great time celebrating Kristin and Brian and I just kept that little loss of consciousness a secret from my sister so she wouldn’t have more on her mind that day.

I visited my doctor again the following week and as luck would have it, I had another episode right in her office. This time I maintained consciousness and was able to communicate a bit about what was happening . She was able to see what I was experiencing and set up an EEG; she was also able to get me into see the neurologist a month and a half earlier than their “next available appointment”.

After a bit of an emotional roller coaster (we think you might be having seizures, no we aren’t sure what is going on but think you are okay, oh wait…turns out you are having seizures!) my neurologist called me at home to inform me that my EEG did indicate that I was having seizures in my left temporal lobe, which was consistent with my symptoms. He diagnosed me with  Temporal Lobe Epilepsy. He explained his concerns: continued seizures, increasing in frequency and intensity, likelihood of loss of consciousness and risk of serious injury or death. We also discussed the course of action moving forward; medication and no driving for at least 6 months – per Washington State law.

By this point I’d had 50 or more seizures that I was aware of; and possibly more while I had been sleeping; waking me throughout the night.

Ultimately it is good to have a diagnosis (even though not the one I’d hoped for) and to be on medication that is addressing the problem. Epilepsy is a chronic disorder and likely something I will deal with for life; I haven’t quite wrapped my mind around that yet. For now I feel inconvenienced by not being able to drive anywhere. It takes a fair amount of coordination to plan for appointments and activities outside of the house.

I am very thankful for the way that it unfolded and that I was protected from serious injury when I lost consciousness in my driveway. I am thankful that I didn’t lose consciousness while I was driving, standing at the top of my stairs, alone at home, etc. I am thankful that these partial seizures didn’t inhibit my ability to care for my kids (they weren’t even aware anything was going on) and that the kids weren’t put into a difficult situation in the event I did lose consciousness when no other adult was home.

I am also thankful for the timing; which was clearly well planned by God. I think about the timing often. If I had been diagnosed with epilepsy prior to our adoption of Callie, would I have changed my thoughts on adding another child to the family? Would China’s Center for Children’s Welfare and Adoption have accepted us as adoptive parents since their requirements read, “Both the husband and wife must be physically and mentally fit and must not have any of the following conditions … h. Severe diseases that require long-term treatment and that affect life expectancy, including malignant tumors, lupus, nephrosis, epilepsy…”?  What if I began having seizures while we were in process for Callie, would that have changed the outcome, could we have missed our daughter? What if I had begun having seizures while we were in China away from familiar medical care? All of these questions lead me to believe, even more so, that God was holding me in the palm of His hand, protecting me and that Callie was meant to be our daughter and us her parents. And I am so thankful that the timing worked out the way it did.

For now the kids and I will be walking to our destinations around town in the coming months; to the library, to the donut shop, to school, to the park, to shops and stores downtown so please wave hello if you see us.

 

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10 thoughts on “Epilepsy

  1. Laurie King

    Jess, You are so brave to share this with everyone. I hope that the Lord used the writing of it to help you process through His provision and love for you. It truly was by His hand that the timing worked as it did. Callie is meant to be your daughter and He will be with you in this life long journey of health and parenthood! Hugs,

    Laurie

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  4. Rachel

    Wow!! Just wow!! I just read two of your blog posts as I am behind and my heart is just squeezing! If that makes any sense lol. You all are going through so much and yet God is infinitely so much bigger!!! I feel your pain though I cannot fully relate. How frustrating not to be able to drive, that one would be hard for me too. Please know I’m praying for you! I’d love to get together and chat over a cup of coffee/tea some day! ❤❤❤ for all of you guys!

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