Three Months Later

Author: Ryan VanSice

Ready for another rambling episode on Slice and Dice? Me too. Let’s continue our saga from earlier because it’s been quite some time since the event in July. Some of this could get a little dry, but I learn things as I go, so I share that stuff with you all, along with some commentary.

I had my follow-up appointment with my neurologist three months later, and it went really well. Currently, I still take Emgality. It’s a CGRP inhibitor used for migraine prevention. It causes some burning injection-site pain, and during the first 24 hours after my injection, I am very fatigued and have a hard time sleeping. However, it controls my migraines very well for a few weeks.

I reviewed with my provider that the doses seem to wear off at times, and I can notice more breakthrough symptoms. These hemiplegic migraines are no joke. My breakthrough symptoms are typically tingling in my face and the top of my head, followed by tingling and numbness in my right arm and leg. I can still “control” or use those limbs, but sometimes my speech changes and it takes longer to pronounce words correctly or get them out the way I intend.

I feel that when I’m done with work, I am definitely due for my afternoon dose of migraine medication, which is usually Depakote. I’m on a low dose, and I like it because it smells like vanilla or cupcakes. However, I don’t like it because of the side effects, which are only worth tolerating until I can change medications.

I reviewed with my provider that Depakote is working effectively, but the weight gain from it may be the end of me. So we discussed switching to lamotrigine as a potentially more useful and tolerable option. There is a significant concern for SJS with lamotrigine, which made me nervous since no one in my family has ever used the medication. We reviewed that risk in depth.

I agreed to trial a low dose with a slow taper. I think it’s going to be something that works well and may even provide some added benefits, including avoiding further weight gain.

Stevens-Johnson Syndrome (SJS)

SJS is a severe allergic reaction affecting the skin and mucous membranes that carries a boxed warning for lamotrigine. While approximately 10% of people starting lamotrigine develop a mild, harmless rash, the risk of developing SJS, or its more severe counterpart, Toxic Epidermal Necrolysis (TEN), is much lower, occurring in roughly 0.03% to 0.08% of adults. Comforting, right?

Knowing far more than I probably needed to, I researched the risk factors for SJS:

1. Taking Depakote while starting lamotrigine, as Depakote can slow the body’s clearance of lamotrigine.
2. Higher doses of lamotrigine or increasing the dose too quickly.
3. Genetics.

Theres likely more, but this sparked my interest. Genetics is a whole world within pharmacy, but there is fairly established data on this topic. According to the NIH, several human leukocyte antigen (HLA) genotypes have been associated with an increased susceptibility to SJS. Individuals with the HLA-B15:02 genotype, particularly those of Chinese or Southeast Asian descent, as well as those with HLA-B31:01 (more commonly reported in Japanese populations) or HLA-B*44:03 (reported in Korean populations), may have a higher susceptibility.

Reference: NIH Article

I feel a little better knowing my lineage isn’t from one of those higher-risk populations, unless we’re referencing Genghis Khan, who is potentially an ancestor to far more people than we’d like to admit. Rumor has it that 1 in 200 men may be his descendants. That said, he lived around 1100 to 1200 AD, so it’s probably negligible enough that I don’t need to pursue genetic testing based on that possibility alone.

Moving Forward

Moreover, lamotrigine is the game plan moving forward, so I’ll keep you posted on how that goes.

These migraines have been fairly debilitating. They prevent me from doing basic things that I need to do and have redefined how I look at life and success. Patience was not built overnight. I lived through these attacks on my life, and things won’t be the same. I don’t think they’re supposed to be.

God gave me another opportunity to adapt, and thank God for humankind’s mastery of pharmaceuticals. These advancements allow patients like me to live a somewhat normal life and continue to work, serve others, love our families, and make a difference in our own little corner of the world.

One milestone I will share is that I recently ran about 2.5 miles with zero issues. My feet and body don’t get numb afterward anymore. It used to be that the more I worked out, even a half-mile walk sometimes, the more numb or tingly I would become. It was incredibly limiting.

After being stable for this long, I’m hopeful that things will continue to improve. I know I won’t be running any more Ironmans, and it’s painful to realize that was once such a defining part of my life. But it’s also really cool to start again and remind myself that this is my new baseline.

Now it’s time to get to work spiritually, mentally, and physically, maintaining wellness rather than pushing physical thresholds beyond my comprehension.

Being a dad is the best phase of my life so far. I’m thankful for these three months I’ve spent with my son, Riley, and my wife, Mackenzie, and I wouldn’t have it any other way.

I conquered this event, and I will continue to manage it.

Things like this affect your psyche. They challenge your identity, your mantra, and your reason for being who you are. However, what I’ve learned that you can not deny is that there’s a lot of yourself you haven’t met yet. So for anyone out there struggling with migraines, or anything else, the future version of you may surprise you. You have yet to see what you’re made of too.

Have gratitude for another day, and go make someone else’s day special by doing something kind for them. Good deeds and good attitudes tend to have some special powers.

Slice OUT.