Let’s Try Again

After nearly two years of living in Arizona, it was finally time to establish a local neurologist. My parents are moving to the Southwest and out of Michigan, therefore I won’t be able to see my incredible neurologist in Michigan any longer. Dr. Z is a neuro oncologist from the Barrow Neurological Institute out here, and I am very pleased with her after this morning’s appointment. If this were Yelp, I would rate her a “10/10 would recommend.”

Naturally, I did some research on her ahead of time. A few papers and research studies popped up per usual. What surprised me was that her social media accounts came up, too. All of the sudden I found myself looking at her tweets and Instagram posts about the marathons she has ran (woah!). At first, I thought it was strange and almost felt uncomfortable. But then I realized that I liked knowing this information about her. Knowing that Dr. Z has hobbies and a “real life” outside of her practice was comforting, and reminded me that doctors are people too. While it might be weird for her to know that I know all of this outside information about her, it makes me feel like I know her a little bit better other than just my doctor with a name tag. It also probably makes me a little bit creepy, though. Oops. No shame.

I felt more nervous for this appointment than going on a first date. In most previous first appointments that I’ve had over the years I have to reexplain my entire medical history starting from the beginning. Dr. Z had already read my case file though and knew my story for the most part, which was a nice surprise. She was affirming and honest throughout the appointment, while also hopeful and kind. Dr. Z also has a family connection to epilepsy because both her sister and mother have epilepsy. In my mind, this makes her work all the more meaningful because she brings an extra sense of empathy to the table that truly understands the toll that these medications and this condition can have on a person and family.

While I only had 4 seizures over a four month timespan during my first semester this year, it has not even been three semesters since, and I have had 7 seizures. WIth that being said, we decided to change my medications and see if we can cut that number down. The new plan after today’s appointment and within two weeks with stabilized medication adjustments is: Morning – 200mg Vimpat, Afternoon – 200mg Vimpat, Evening – 100mg Vimpat with 200mg Zonegran, and Breakthrough –  .5 to 1mg of Klonopin wafer. I am extremely grateful that my new insurance plan covers both new medications. Dr. Z mentioned the possibility of surgery to sever the connections causing the seizures somewhere down the line as a big-picture type of view, but that’s something that I don’t think I would ever consider unless I had exhausted all types of seizure medications and other treatment options ever.

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I know that I said before that I was done with scans for a little while, and I still believe that. Dr. Z thought that moving on up to an every 6 months scan regimen would be smart, and I conceded with her there. Thus, my next MRI will be in June. I feel comfortable having one over the summer, while also knowing that I’ll only have two (hopefully) scans a year now. When I brought up my fear of recurrence, Dr. Z states that “Of all of the tumors to have, this isn’t a terrible one.” That actually made me smirk. It was something that I had been wanting to hear but no one would say it. This tumor isn’t completely devastating, but it also isn’t nothing. She said that there are some people whose cases you look at, and you can tell them that this is what they’re going to die of. That isn’t definitively the case with me, but it also isn’t something to completely take off the table somewhere down the road. This case and tumor are manageable, and I can do manageable. Hearing those words allows me to breathe a bit easier. When she took a look at my MRI, she pointed out a little section of tumor that still remained, but that had not really changed since my surgery 2.5 years ago, which was good. She said that keeping an eye on my noggin for the next 5, 10, and 15 years are important. The farther out I get from this surgery without recurrence, the less likely it will be for a recurrence to happen.

So, let’s try again. Let’s try to go four months seizure-free again, just like after surgery.

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Neuro Visit + Upcoming MRI

I saw my neurologist earlier this week. Even though the number of seizures decreased in September and October, I still had the same number of them in August as I did in November after a medication increase. Numbers: 4, 3, 2, 4. We discussed adding more Keppra or a third medication because of the numbers. I am not in favor of adding more meds because Keppra makes me extremely fatigued, and I also don’t want to add a third medication at the start of a new semester with unknown side effects. We decided to continue my current Vimpat + Keppra combination for now and see what December and January bring number wise and go from there.

She also told me about Todd’s Paralysis, which is what I experience for a day or two after my seizures. Sometimes it’s just nice to have a name for an actual condition to know that whatever is going on is a “real” thing.

I had a lot of trouble with car rides stirring up nausea after surgery, before I went to college. I wasn’t traveling in the car very much at all during the past semester, so I had forgotten about the problem. We visited family who live about 30 to 45 minutes away last night and the car ride was pretty bad. I felt sick for most of the night. Yuck. The experience stirred up memories about cab rides in San Francisco.

My next MRI is in one week on December 27th.  We’ll drop off hats and other resources for the center’s library as usual. This will be my one year and four month scan since surgery. It’s a few weeks early, but this way I can have it done when I’m at home rather than rushing around to get it done while I’m back at college. For the first time in over a year I actually don’t feel that nervous!

Spikes

The 6th, 8th, 9th of November, and today have all been seizure spikes. I was too tired and dealing with residual symptoms to write about them until tonight. Each event lasted for up to an hour and a half before serious symptoms started to fully fade, but all left residual effects for days. My right pinky, pointer finger, and forearm remained weak and partially numb/heavy for most of this past week, which was very inconvenient because I had to writing a paper. Three or four seizures a week was a typical, sometimes even a “good” week for me five years ago. Now, more than three or four a month is off the charts.

Three big events in such a short time frame the week before last warranted a chat with my neurologist. I texted her to give me a call (Yes, we text each other!) to discus recent events when she had a minute, which ended being midnight her time. Some doctors work a strict 9 to 5 Monday – Friday and then fall off the grid. My doctor is on-call for her patients anytime, anywhere, any day of the week. She is incredible.

I went to the health center and had labs drawn to check my Keppra and Vimpat levels the week before last – the consensus is that there must not be enough of the two of them in my system, prompting these seizure spikes. There was a fax number mix-up getting the script to transfer out here from Michigan, but the script was eventually received. Now that the old levels are being checked out, my neurologist has added another 100mg of Vimpat. It has been a little over a week since the labs were drawn, but neither my neurologist’s office nor I have received any report in the mail yet. Being the über-patient that I am, I am going to stop by the health center on Monday and track down my results.

I don’t consider these seizures setbacks, but I definitely consider them obstacles. It’s tough keeping a positive attitude when dealing with something that most of my peers are typically unaware of, but I will continue to “dodge, dip, dive, duck, and dive” around anything thrown my way. I’m an underdog, and it’s my job to rise to the occasion. I do what I have to do to create as close to a level playing field as possible for myself.

chart snapshot

Symptoms are numbered 1-5 in order the of when they presented. Boxes are blank if symptoms did not present in those areas.

Here’s to improvement. The less seizures, the better. I’m awaiting the lab results and then we’ll go from there.

Whoops

I took the wrong pills this morning for the first time since starting college.

I accidentally snagged my night-time seizure meds instead of my day-time combo. Luckily, the only real difference was taking an extra Keppra (which I now only take at night) in combination with my usual Vimpat. I thought I would feel wiped out during the day because of the med mix-up, but surprisingly I’ve felt more energized and focused. The effects are counterintuitive, seeing as I took more seizure meds this morning, and seizure meds typically make patients groggy.

Helpful medication tip: pick a day to sort out your pills for the week and stick with that day as a refill routine. If you’re taking several different medications, use a weekly medication container so that each time slot is easy to grab-and-go when you need them.

It’s worth noting that I did end up with symptoms associated to the medication mishap. Spells of a common side effect associated with Keppra, the “Kepprage,” hit me for about two days following the double dose of Keppra. I maintained my schedule of taking Keppra at night the same day that I accidentally took it in the morning, which meant doubling my Keppra levels.