When I’m down for a day with a migraine, it takes me at least a whole extra day to recover. If I’m down for a week… and within that week have extremely important kid-oriented events to attend to… and then the week culminates in 2 ER visits and the worst pain I’ve ever experienced AND my hopes for pill-shaped security measures are dashed AND J is also barely hanging on AND school is ending for the year…. let’s just say the bills haven’t been paid. The house hasn’t been cleaned. I barely remember what I was in the process of doing before the headache hit two weeks ago, how the financial chips were going to fall for the month. I barely remember my own name.
Tomorrow, a guy from the Medical Supply company is going to deliver oxygen tanks, set up, inspection paperwork, and instructions here to the house. It was supposed to happen today, but the local store didn’t have the right flow adjuster. The wonderful customer service rep did call and say we could pick up standard larger tanks to use today, so we did. Getting this set up, for me, was like trying to go to the moon and order a palm tree. It’s an entirely different world.
Oxygen. A major part of the new treatment plan initiated by my neurologist’s office, which is both exciting and scary. The use of oxygen at the ER last week was extremely random. They’d never done it before, and might have been thinking more of calming me down, and my apparent high anxiety level, than that I might be experiencing a cluster headache which could simply be relieved by oxygen therapy. But the oxygen did help my pain, a lot. I’m trying not to think “Why didn’t someone suggest this ten years ago” and instead think “I’m so glad they tried it now.” Cluster Headaches, more typically experienced by men, are also known as “suicide headaches” due to the extremely intense pain produced. They tend to hit in clusters and be short lived, accompanied by eye tearing and nose stuffiness on the side of the pain. I admit it is satisfying to be able to add characteristics of Cluster Headaches to my already extremely complicated regimen of migraine symptoms. “TeamCluster!” I thought, hashtag style, as C typed up the oxygen prescription.
The scary thing is that I am supposed to try to not use tablets. Of any kind. At all. If 20 minutes of oxygen and a double dose of magnesium doesn’t help, I’m supposed to use a Sumatriptan injection. But no more than twice per week. So I went to my Wednesday appointment hoping for a painkiller prescription for emergencies, and left with instructions to avoid pills altogether. If I have several bad days in a row, and the injections aren’t really working, I am supposed to call UT to be admitted for IV DHE treatment, which I used to do 2 or 3 times per year but stopped when my local hospital changed their practice and stopped allowing doctors to admit their patients. If the timing is off and I need emergency care on a weekend, I can go to the ER.
The appointment was extremely difficult. The headache nurse coordinator is a person I don’t find particularly warm or compassionate, and I felt she yanked away a lot of the validation Dr. Mac and N gave me on Monday. On the other hand, it feels like a big deal to have oxygen tanks in my home to use whenever I want. Talk about making an invisible illness visible. So that, like I mentioned, is sort of validating in itself, though it is easier to take a bottle of pills on vacation than a tank of gas on a wheelie cart.
I know that my neurologist’s approach here is at the forefront of migraine research, but I also know my own illness and I know that the Norco I took on Friday saved me. I feel that there could have been a middle ground reached at this appointment, and I would much rather be sitting on the middle ground than on this island of tough love. I wanted reassurance I would never have to live through that kind of pain again. Honestly, I wanted short term comfort as opposed to long term pain reduction, as bad as that sounds. This could be a really tough transition. I’m not sure how many chronic headache sufferers, 80% of whom are in a medication overuse situation (I read today) actually make it back to episodic migraine. I was always severe episodic, even as a kid. The first big change leading to chronic-ness was FDA approval of imitrex tablets. The second big change was pregnancy, childbirth, breast feeding, and early peri menopause leading to my hysterectomy in 2011. I now can no longer work and have been approved for disability, all for the convenience and ease of short-term comfort. And this life, is it truly what I want?
Tonight, I sleep, two oxygen treatments under my belt. Tonight, J cleans. Tomorrow we get set up with my oxygen therapy. Bills need to be paid, and then bags need to be packed for our annual family vacation, already coming up on the 14th. Last year I went to the ER in Cape May County twice and barely got out of bed. This year, if we can pull ourselves up, dust ourselves off and make it there, the oxygen will be in our family’s Victorian attic room, and I will be at the sea side.