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!

Surgery Update 😊

By Kerissa Lee • August 21, 2026
Dear friends, I just wanted to thank you all so much for praying for me during my abdominal surgery on August 6th! 💚 All of your messages/emails really encouraged my heart! If you missed my previous post, I had to have an unexpected surgery to take down the jejunostomy tract and repair an enterocutaneous fistula (a rare complication from having a j-tube for 12 years). I truly felt your prayers, and the Lord answered so many of them as well! 🥹 My surgeon only had to remove about 1 1/2 inches of my small intestine which is great news! I was in the hospital for 4 days because my blood pressure was low and pain control was rough (it’s a long story, but pain management is complex due to a specific medication I take daily at home..). But aside from that and having an allergic reaction to the surgical glue, I’ve been healing well. Thank you again for praying!! God has been so faithful throughout this journey. I got a visit from my sweet foster nephew when I was in the hospital (2nd picture)! 🥰 I can’t wait until I can show you his face—he’s so adorable. 🩵 I’ve mentioned this before, but an important medication I take causes severe insomnia (still not falling asleep until anywhere between 3 AM-9 AM). 😞 But I saw my naturopath this past Monday, and she’s going to treat me for suspected cortisol spiking up during the night (which disrupts the body’s circadian rhythm). I’m thankful for the wisdom God gives her, and I’m excited to see if this treatment will help! It will take 6 weeks to see if there’s any benefit, but I first have to specially order it.. 

August 6th Surgery Prayer Requests 💚

By Kerissa Lee • August 6, 2026
"God is our refuge and strength, a very present help in trouble." -Psalm 46:1

Another surgery 😞

By Kerissa Lee • July 25, 2026
Hi, friends, I thought I wouldn’t be posting for a while since I’ve been doing really well, but I’ve hit a bump in the road again and would appreciate your prayers. 💚 This past Tuesday the 21st, after nearly 12 years living with it, I had my jejunostomy tube removed completely. I thought it was going to be a simple process and that the stoma (hole) would close quickly within 30 minutes like they said. That didn’t happen, though, as the stoma started draining a ton! I couldn’t even leave the lobby and had to go back up to the clinic on the 8th floor to have an ostomy bag placed to collect all the small intestinal digestive juices that continually drained. Unfortunately, I’m experiencing a very rare complication called an enterocutaneous fistula. 🥺 I’m disappointed this is happening, but I’m not exactly surprised since my whole medical case with Mitochondrial DNA Depletion Syndrome has been rare from the very beginning.. I also don’t heal well due to connective tissue problems from Ehlers-Danlos Syndrome (case in point: my port site issues back in May when I had to have a new one surgically placed on the other side of my chest).. 😞 The clinic told me to keep emptying the ostomy bag and monitor the output. It wasn’t a fun 2 days. This whole process has definitely made me so grateful to God that I’ve never needed something like an ileostomy! TMI, but I lost almost a whole pound of fluid because so much was gushing/spurting out of the stoma every time I ate or drank. Losing so many electrolytes, I started experiencing symptoms of dehydration—weakness, high heart rate, and headaches. So yesterday, I had to go back and see the surgery resident who basically placed another j-tube (it was so painful again!). 😭 This is a temporary “plug,” and I’m bummed to say that I have to go to the operating room to have the jejunostomy tract taken down and the fistula repaired. This surgery will be happening as early as next week (it depends on my surgeon’s schedule).. She said it will be complex, especially because adhesions (scar tissue) form when a person has multiple abdominal surgeries.. I lost count what number this surgery/procedure will be, but I do know I’ve had more than 20! 😞 I know God is with me wherever I go and will supply me with the strength to endure yet another surgery like he always does. But, I’m still sad that I have to have more incisions added to my body. I shared the lyrics to this song before on an old blog post (the song is called It Is Well With My Soul by Matt Redman), but it immediately came to mind again when I was thinking of scars. As the song below said, it’s a reminder to me that my scars can be a testimony to others of God’s grace in my life and how he has brought me through every single pain and sorrow. In the Bible, I’ve always thought it’s so neat that Jesus still had his scars after he rose from the dead—he had a new body, and yet, his scars were still visible. ❤️ Our scars are a sign of grace in our lives Oh Father, how You brought us through When deep were the wounds And dark was the night The promise of Your love, You proved Now every battle still to come Let this be our song It is well (it is well) With my soul (with my soul) It is well, it is well with my soul