Headache neurology appointment update.

Kerissa • October 17, 2022

Hi friends,

It’s been a little while since my last medical update. I recently got back from another neurology appointment at University of Washington Medical Center.  This appointment was with a headache neurologist regarding my migraines and other neuro symptoms.

It was a very thorough visit, and I’m so thankful the Lord answered our prayers for a kind and knowledgeable specialist.  He ruled out the possibility of Pseudotumor Cerebri and agrees with my other UW neuromuscular neurologist (who I saw 2 months ago) that my migraines are related to my Mitochondrial DNA Depletion Syndrome.  Since they happen nearly every single day, he diagnosed me with Intractable Chronic Migraine with Status Migrainosus which is a severe type—he said that my brain is too hyper-excitable and that we need to dampen those signals.

He put together a treatment plan tailored to my case, but since every patient reacts differently to meds, it will be a lot of “trial and error.”  He prescribed an oral, dissolving medication that is to be taken for when the migraine first starts and is in the acute stage.  It’s very expensive, so it needs insurance approval first.  He also prescribed a different pill to be taken daily for the overall chronic side of things. I just started this med, and it’s making me really dizzy, even at such a low dose.

He believes in the holistic approach and not just in pushing pills, so he recommends I take some specific supplements that can help migraines.  He also discussed how important it is to get adequate sleep and 150 minutes of exercise per week.  The problem is, the terrible head pain keeps me up for most of the night.   I would appreciate your prayers that the above treatment plan can help lessen these migraines so that I can not only sleep easier but also function better overall during the day!

In other news, I recently saw my GI specialist.  Since last year, I’ve unintentionally lost almost 10 pounds, so he added IV dextrose (sugar) to my IV infusions that I receive every night.  We’re hoping that will help maintain my weight.  He also ordered some blood tests to check up on my Wilson’s Disease and to make sure I’m not low on iron (since iron deficiency anemia worsens headaches).

Experiencing such terrible pain every day on top of all my other symptoms has been a hard trial, but the Lord continues to give me grace and endurance for each day. ❤  I really couldn’t do this without Him…..and without you! I am so grateful for your loving support and prayers.You are a blessing to me!

By Kerissa Lee October 19, 2025
Dear friends, At the beginning of October, I started taking a new medication for the autoimmune disease. I thought I was tolerating it just fine, but after several days passed, I began experiencing nausea, loss of appetite, weakness all over, and increased pain. 🙁 It’s like I’m experiencing another “mito crash.” I found out that this specific lupus medication affects mitochondria. That is, it causes an overproduction of reactive oxygen species (ROS). This, in turn, causes cell damage and oxidative stress. I sure wish the rheumatologists would have known about this before prescribing. But I have to remember that Mitochondrial DNA Depletion Syndrome is rare, and they’re not “mito experts.” Anyways, the last time I felt like this was back in May.. I’m so grateful to God that I haven’t needed to be hospitalized from this, but at the same time, I’m also sad that this happened at all, especially because I had such a nice stretch of stable health. I’d really appreciate your prayers, that this muscle weakness can resolve soon, and that this increased pain all over will get back to my baseline. Every time I have a “mito crash,” it feels like I’m fighting the flu which always sucks. The pain has been hard to bear. And whenever I’m in the thick of it, it’s difficult to remember that this too will eventually pass. 😢 Pray that I will endure and follow Jesus’ example like this passage from Hebrews 12:1-2– “Let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross...” Thank you all so much for praying for me. ❤️
By Kerissa Lee October 4, 2025
"Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness." James 1:2-3
By Kerissa Lee September 3, 2025
"The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness." Lamentations 3:22-23