Sorry I didn't post on Friday - I was getting a cold last week and after the long day on Wednesday getting to/from Houston for my appointment, I was not only beat but feeling pretty crummy from the cold, so I chose rest over writing.
Last Wednesday Jeff and I made the trek to Houston's medical center area for an appointment with an epileptologist, which is a neurologist who specializes in seizures and epilepsy. In the time since my seizure on November 24th, I've been diagnosed by a neurologist at the hospital where I was brought via ambulance, then I saw a neurologist in town, then I had a second opinion phone appointment with a seizure specialist neurologist out of Yale University, then I met with my neurosurgeon for an update on my back surgery but also discussed what had happened, seizure-wise, and now I was meeting with a more local
(if you could call driving two hours local...which you kind of do in Texas) specialist. Yes that's a lot of doctors but having a seizure out of the blue was a lot, too. I needed help.
When I was trying to find another neurologist to get some better clarification for what was happening with my brain, the Baylor College of Medicine's epilepsy center was referred to me by the three neurologists who I'd had direct contact with
(I didn't ask the one from my ER visit), so I felt like I was going to the right place. Turns out, I was. Holy cow, I feel so much better about my situation. And while it definitely IS a situation, at least I have a good understanding about what is happening and what needs to be done to release me back into the wild. Or at least back to my normal life.
After being assessed by the nurse tech - and getting her to understand when I responded "never" when asked if I drank that I really meant never, not even a glass of wine every so often, and no I also didn't vape, smoke cigarettes, or smoke pot, which was cracking me up in a way because that's not me but I can see how using any of those products could factor into messing up an already messed up brain, I met with the doctor. He came to the room familiar with my case and wanted to hear from both Jeff and I what had happened - he was interested in what Jeff had witnessed which was good because I have no memory from the time I was standing there to when I became aware of paramedics around me.
His take on what happened was that based on my blood work from the night of the seizure, I had been very dehydrated
(my potassium was incredibly low) and that triggered the seizure. It's similar to what the Yale specialist said, that I was a little under the weather that weekend and that's when things went haywire. There's no explanation as to why this happened at this point in my life considering I've been dehydrated and under the weather many times in my 56 years, but in the time since it happened I've been reading up on seizures and pretty much expected to hear the "we don't really know why this started happening NOW" explanation, so I guess it's common. I'd brought a CD with my MRI and CT scans on it and the doctor popped it in the computer to show me how symmetrical and normal my brain looked; he had read the radiologist's report beforehand and wasn't expecting to see anything odd. He did mention that if I began to have breakthrough seizures or started to feel odd, he would want another MRI done at the six month mark, just to make sure there wasn't anything tiny that didn't show up on the original MRI but had since grown. Fingers crossed I won't be needing that!
My EEG, on the other hand, is the smoking gun. He said because it was abnormal I am at risk of having another seizure. That is what everyone is trying to prevent from happening. But instead of simply stating that and telling me that I'd need to be on anti-seizure meds for the rest of my life, as my local neurologist did, he went into more specifics which made a big difference in how I looked at this. His diagnosis, based on the EEG, is focal epilepsy. To give you an idea about my local neurologist, she said she never uses the word epilepsy in a diagnosis because of the stigma that comes with it, which seemed odd. Like, aren't you perpetuating this so-called stigma? Epilepsy, seizure disorder - whatever you call it, I just want to be well.
While he agreed that switching from Keppra to Lamictal was a good thing based on my medical history, he explained that the ER doctor put me on Keppra because it ramps up to the full dose in 10 days, whereas I've been on Lamictal for nearly eight weeks and am apparently nowhere near full dose. Which is another interesting thing. I was frustrated with my local neurologist because she was vague about how much Lamictal I should take - she kept saying it would be somewhere between 100mg and 200mg per day, which was a big difference to me considering I'd only been increasing the dose by 25mg every two weeks. She'd rewritten my prescription a couple of weeks ago with 100mg tablets and told me to go from 100mg to 200mg over the course of two weeks, which seemed like quite a jump. Well, he agreed with that, regarding the big jump; but he said that he wanted me to be on 400 - 500mg of Lamictal a day - what the what?? That's a huge difference! Of course I questioned this and he said that he equates taking anti-seizure medicine to putting on a bullet-proof vest - you want to put on the heaviest vest you can tolerate when going into battle. The more often I have a seizure, the more my chances are of getting hurt, or worse; he prefers a high maintenance dose to reduce risk.
Until I get up to the maintenance dose, I will be taking the Lamictal twice a day. I asked if I could take it all at once, like in the evening, and he said absolutely not - it's a 12 hour medicine and it would not cover me for 24 hours. Which is another frustration I have with my local neurologist; the only thing she said to me was to never miss a dose or I could have a seizure - no mention that I was taking a 12 hour medicine! Sheesh. Once I'm on the maintenance dose I should be able to transition to the extended release version but for now with titrating up weekly
(I'm moving up to 50mg increases after next week), I will need to cut pills in half and that doesn't work for extended release. He did warn me that once I'm on the higher maintenance dose, if I miss a dose my chances of having a seizure are sharply increased, and I don't know if it's the way he was communicating with me or what, but I heard what he said better than I did from the local doctor.
Oh - he did a cognitive exam
(my first, ahem local neurologist) and I passed with flying colors; I learned that I can recite the months of the year backward from December as long as I close my eyes to do it. Also, cat guitar Spain. I had to remember and repeat those three words throughout the exam and I did. I told him that I probably wouldn't have done as well with this had it been closer to the seizure because my concussion really borked my brain; it was nice to see how much I've improved since then.
I guess you can surmise that I was happy with this doctor and am switching my care to him. Yes it will mean driving to Houston for my appointments, but the nice thing is that he's very amenable to communicating via email and phone calls; when I mentioned this to Amanda
(my PT/boss) she was impressed and said that showed confidence in that he was willing to put in writing what he said. And unlike here, where I've been going to monthly appointments with my now-former neurologist, he won't need to see me until late May, and then yearly unless something comes up. I'm glad I put in the effort to finding a specialist. I feel much more confident moving forward with the medications I'll be taking to keep myself seizure-free.
Oh, one last thing: I won't be taking a bath ever again in my life. I wonder if there are a lot of seizure-related bathtub drownings that occur because EVERY SINGLE DOCTOR has stressed this to me. Along with that, no swimming alone. I guess I'm lucky to have survived this long with bathing and swimming - yes I'm joking, but it's crazy how dangerous some seemingly normal things can be if you are prone to seizures. Who knew that having a seizure would mean the end of baths for me? Luckily I prefer showers, anyway.
