Hey everyone, Kristl here. I realized last night that we haven't really talked about Rachel's epilepsy diagnosis, save for a brief mention in our sustainable living update. It's a big focus of our lives right now, so I think it's time to share more about it. She had her first seizure in 2006, but was misdiagnosed with panic attacks. Her seizures tend to present with a blank stare, a feeling of panic, stomach churning, and occasional smells/sounds. She continued having these episodes off and on for the next 7 years, with nothing seeming to help. Doctors sent her to psychiatrists, who put her on anti-anxiety meds, which sometimes worsened the seizures. When we started dating in 2011, she told me about the panic attacks and I thought it was an odd presentation, but didn't really question the diagnosis. A year and a half later, after witnessing many of these so-called "panic attacks," I realized that I they might be seizures. I did a lot of research before mentioning my hunch to Rachel, as I didn't want her to freak out. When I was pretty sure I was right, we took our concerns to our primary care physician. Unfortunately, she told Rachel that if there wasn't a motor component, it was unlikely she was having seizures (wrong). Rachel asked for a CT scan and the doctor hemmed and hawed, saying that she could write the script, but would then have to explain it to the insurance company. Rachel pressed on and got her to begrudgingly write the script, but then we couldn't afford the scan, since it wasn't "medically necessary."
Fast forward to October, 2013. We were doing a strict eating plan, gearing up for our wedding, and she was working out the details of applying to school and possibly quitting her job. On the morning of Thursday, October 24, 2013, I was lying in bed awake when Rachel started smacking her lips. This was frequently a precursor to her episodes, so I did what I normally do, which is hold her hand until the seizure passes. This time, however, after smacking her lips, she let out an animalistic wail and then her entire body started seizing. The seizing stopped relatively quickly (though it felt like ages), and she lay there, unresponsive, foaming at the mouth, making a guttural sound when she breathed. It was one of the scariest moments of my life.
I called 9-1-1, and the paramedics took her to the ER. I followed shortly, bringing a bag with socks, a book, her phone, and a charger, but forgetting her glasses and wallet - way to go, me! She underwent blood tests and a CT scan in the ER before they decided to admit her. While she was in the hospital, she got an EEG, which showed significant seizure activity, and an MRI, which showed a congenital sclerosis on her right temporal lobe. She was diagnosed with epilepsy and put on medication.
Unfortunately, the medication hasn't been working that well. She's had clusters of seizures in the months since her grand mal, and each time her neurologist has upped her dose. She'd feel better for a bit, but then experience seizures again. We were really hoping it would work, since it's the one that has the least amount of side effects.
This past Monday night (May 19, 2014), she had another grand mal seizure. Thankfully, my sister was visiting, so I didn't have to take care of everything myself. She was an enormous help. This time around, she was only in the ER for a few hours before being discharged. She's recovering more quickly than she did in October, but she did have two more small seizures last night. This is typical, as seizures usually cluster, but it's pretty stressful. We're meeting with the neurologist tomorrow to discuss changing her medication.
As we've mentioned previously, I'm in the process of moving my acupuncture practice to a new office. This is a huge, exciting, very expensive endeavor. As can be expected (even though I was hoping it wouldn't be true for me), there have been numerous delays with the construction and I've been without a regular practice space for the month of May. This has left us with very little in the way of income for this month and unexpected medical bills are not a pleasant surprise.
We've set up a YouCaring fundraiser page to help raise money to pay for Rachel's medical expenses and help us pay for some household bills for the month. We're very close to being funded, so if you can share it or have a bit of money to spare, we would greatly appreciate it. If you have any questions, have gone through a similar struggle with a misdiagnosed/difficult-to-control seizure disorder, or have advice for Kristl on how to deal with the fear and stress (mild PTSD?) that goes along with this situation, let us know. We'd love to hear from you.
Here's the link to the fundraising page again: http://www.youcaring.com/medical-fundraiser/shaking-the-money-tree-to-fund-fewer-seizures/181030!