Monday, February 17, 2020

Seizure/Neurology Update

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.

24 comments:

  1. Oh my word! It sounds like you found the perfect doctor for you...even with the two hour drive to get to him! I hear hope for a normal life from this doctor!!!!

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  2. I am a bath person. Big time. I have had times when I could not take a bath alone too. And someone will bring a book or their phone and stay in to watch me. I have gotten in tub with sports bra if it was someone who did not want to stare at me too naked.

    My daughter and I use to travel 9 hours to specialist several times a year. Now we see one two hours away and it feels like next door.

    The right specialist is totally worth it, agree. So glad this is all working for you.

    Did you put together a binder with all your medical records to carry with you to appts and when you travel?

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    1. I can't imagine traveling 9 hours but you do what you have to do, right? With this modern era, my records were all connected between the two medical centers - MyChart is really awesome for that. All I needed to bring was a physical copy of MRI/CT on CD, and I brought the printed out report from my second opinion Yale doctor. He had everything else right there, how nice, right?

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  3. This new guy sounds terrific and I'm so happy all your hard work in being your own healthcare advocate has paid off. I'm sure having confidence in him is helping you reconcile all of this and making it easier to move back into your normal life.

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    1. He definitely made me feel more reassured about the whole thing.

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  4. Good for you, seeking a second opinion at a major teaching hospital. I always recommend that to people with a major medical issue. Sounds like you found a good one. Fingers crossed that your seizure was one and done!

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  5. This all sounds so good. I did laugh at the no bath thing. I used to take baths every day. But as I get older, I like showers more.

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    1. This gives me a bigger justification in getting rid of our huge bathtub when we eventually redo our master bathroom - I want one of those big walk in showers where you don't have to have a glass door.

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  6. This doctor sounds great! This stranger on the internet is thrilled for you (and hopes everything keeps improving!)

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  7. I am still sooo thankful Jeff was with you when this seizure happened. Glad you got some answers and feel confident with this doctor. 2020 is your year!

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    1. Me too, Kim - can you imagine if that happened when I was home alone? Eek. And here's hoping I can own 2020!!!

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  8. Sounds like a very encouraging appointment. Glad you have found a doctor you trust. Best wishes for continued seizure-free living!

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  9. Holy cow, I am just shocked at how much misinformation (or, bad direction?) you had re: your drugs from the local neurologist. What in the actual hell? Thank heavens you went to this guy! Geesh! Totally worth the drive to see him, and that is awesome he will do email and phone too. I am glad you got some direction.

    I had no idea about the baths but that totally makes sense!

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    1. I think both misinformation and bad direction - and it's scary to think that had we not been more accepting of whatever the first neurologist told us, we might have gone down a less than optimal path for dealing with seizures.

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  10. Thanks for the update, Shelley and congrats on your normal, symmetrical brain! Good to know that you have a doctor who really knows his stuff about your condition. The simple fact that he was specific about your medications must feel so reassuring! And now that you know more about how the medication works (Shelley's Kevlar Vest!), hopefully you'll feel a little less like you're waiting for the other shoe to fall. Forget the baths, the big question is are you okay to drive now?

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    1. Emmaclaire you are such a good wordsmith - Kevlar Vest is cracking me up! I will be three months seizure-free in a couple of days, so at that point I am allowed to drive per Texas law.

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  11. Good to hear!! It's amazing the difference it makes when you actually trust your doctor. So glad you found him!!

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  12. I'm so glad you seem to be in the hands of a great specialist. Worth the drive. Will you be able to drive again being on the Lamictal?

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    1. Yes - actually it's not the specific medicine that allows me to drive, it's the legal waiting period from seizure to no seizure. In Texas that is three months, so I can drive again in a few days!

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