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!