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!

Letter to my GI specialist 💚

By Kerissa Lee • March 31, 2026
Dear Dr. Phillips, There aren’t enough words to express how thankful I am to have had such an amazing GI doctor like you these past 13 years. I think of all the hard challenges that have happened starting at age 20 and beyond: experiencing GI dysmotility, not being able to eat “normal” foods without terrible abdominal pain/distention, only tolerating soft consistencies like baby food pouches (which was not fun as a 22 year old!), needing an NJ tube placed down my nose, having a jejunostomy tube surgically placed, then no longer tolerating tube feeds, dropping down to 77 pounds, getting admitted the day after Christmas to start TPN, being surprised by the extremely high copper levels on my liver biopsy and starting treatment for that, going through septic shock which caused ischemic hepatitis (remember when my liver function test was 1674!), having sepsis 5 other times from multiple central lines and ports, requiring urgent surgery to remove my gallbladder, needing D10 added to my IV fluids for numerous mitochondrial crashes, and much more. Through all the highs and lows, you were there for me, and I truly feel like I hit the “doctor jackpot” to have had a GI specialist as caring, compassionate, knowledgeable, and kind as you. I shed quite a few tears to my chagrin at my last in-person appointment with you in February 2026, and I still do as I reminisce and write this letter. But, they aren’t just tears of sadness. They are also tears of gratitude—I know this journey would have been much more difficult if I didn’t have your wonderful care and support all these years. I’m so happy that I was able to get off of TPN back then after 5 years of being on it. Not only that, but I’m so thankful that I can eat orally to my heart’s content without pain and abdominal distention. I know that’s in part due to you, so thank you. From the bottom of my heart, thank you so very much for caring for me. I will never forget you, and I wish you all the best as you start your retirement. :’) With immense gratitude, Kerissa

J-tube update

By Kerissa Lee • March 17, 2026
"God is always doing more than we know, working toward a good we will one day rejoice in." -Lysa Terkeurst

Please pray ❤️

By Kerissa Lee • March 7, 2026
Hi, friends, I would really appreciate prayer. Some of you already know this, but at the end of January, I started dealing with an abdominal abscess right next to my j-tube. I looked back through my records, and that was my 6th abscess. :( Since then, it’s sadly been one issue after another. I won’t go into all that has happened, but I’d especially love prayer for my j-tube site. After the abscess, I had my tube changed to a new one on 2/27. The surgery nurse practitioner decided to try the next size up to see if it could possibly decrease some of the leakage, but unfortunately, that was the wrong decision. It’s too large, so now the site is leaking tenfold compared to my previous size. The small intestinal fluid that keeps leaking out around the tube is full of acid which is burning my skin and making it raw. 😭 If you want to know what it feels like, imagine having a bad burn on your skin…then, on top of that, imagine acid being poured onto the burn every hour continuously. That’s how much pain I’ve been in, and I haven’t been able to sleep very well until after 6:30-7 AM each night because the burn is so intense! :’( I could cry, and I have—that’s how bad the pain is… I would show you a picture of the site but it’s not pleasant. 🥺 I’ve been emailing the nurse practitioner every single day, asking to have the tube changed back to the previous size. She hasn’t been helpful. I’ve tried all of her recommendations, but they aren’t fixing the root cause. I had to get an x-ray with contrast earlier today to check tube placement. If she does eventually agree to have the tube changed, I don’t know how I’ll bear the pain of the procedure… Remember, they don’t use sedation for these procedures (my GI specialist is shocked they don’t!), and even though I’ve been asking for lidocaine to be injected for past tube replacements, how do I bear to have needles pushed into such raw tissue?! 😭 Please pray that I will be courageous and strong in the Lord. I think of the verse from Philippians 4:19, and it’s comforting: “And my God will supply every need of yours according to his riches in glory in Christ Jesus.” He will grant me the peace and strength I need to be brave. His grace is sufficient. ❤️