Today I woke up having had a lingering ache behind both eyes, painful enough that pressing on the bones of my face left a bruised sensation. The aches continued to the base of my skull, the knots where my neck meets my head equally as painful, with an ungodly tightness reaching down through my neck.

This isn’t my typical migraine presentation, but one of many types of pain I’ve been plagued with over the last few years.

It seems if anything the migraine presentation shifts to correlate to what might be a trigger, despite the obvious fact that the migraine would be there regardless. I recently got glasses, I am apparently very nearsighted, and the adjustment has been anything but seamless. So between the eye strain and the newfound feeling of heavy metal glasses sitting on the bridge of my nose, now my migraines present a bit more like physical pain in the bones on my face since getting said glasses.

Ironically, everyone at the eye care clinic had the deeply annoying sentiment that my hereditary migraine disease would simply magically go away now that my (didn’t need correction when the migraines started) vision was corrected and I wouldn’t be straining myself so hard.

Another friend put it much more eloquently, that isn’t so nice to now have another factor to consider when evaluating what this migraine is being exacerbated by.

Today wasn’t even especially heinous as many morning migraines tend to be… though I won’t lie this achy brain achy eyebrow sensation has been hanging out for a few days and I had decided yesterday that it wasn’t worth taking any meds for a migraine that had been around far beyond the window to treat. But as things waxed and waned this morning, I took a chance on a dose of Ubrelvy – the only CGRP abortive that sometimes does anything for me – despite it not being my typical kind of migraine.

I had a pretty short list of things to do today.

We have roofers here for the second day in a row, today thankfully being much quieter than yesterday and also being their last day. But, with the planned noise and disturbances I had already intended to take it easy.

I sold some paintings and part of my process before shipping them off is to scan them and save a digital copy, which is something I’m still getting the hang of. To my surprise, I pretty quickly began to feel the migraine lift, the tension in my shoulders drift away as I spent about an hour editing scans together to create a single scanned image.

I had presumed I would simply continue to feel like crud, I’d probably nap a bit after being on my computer and then throughout the afternoon package up the paintings and get them ready to ship tomorrow.

Instead, as the meds continued to work I was able to work through complicated sale processes – I set up an Etsy store and I am totally still in the trial and error period – which if my migraine was doing the opposite and worsening, there is just no way I could have worked through any of the issues I faced without getting frustrated and pushing it off to another day.

Packaging complete. Shipping labels affixed. Time for lunch.

At this point, I was feeling almost energized.

I put on some light makeup, and geared up to drive across town to drop off the package. It is so deeply uncommon for my meds to work, but to also have energy, AND feel good enough to drive all within ~ 3 hours of treating said attack.

Of course today would be the day I ran into a UPS driver just a block from home and was able to hand off the package and return home much earlier than expected.

I made a cup of hot cocoa and kind of just stood in my kitchen, an easy dinner planned for tonight and all I could think was it, this is what I always want out of my medication. And I want this to be how every day goes for ever and ever.

Get up, take my migraine medication like I do all my other medications and supplements in the morning and then all the pain just melts away and I can carry on with my day, not fearful that a misstep will prevent me from cooking dinner, not bound to my home because I’m endlessly awaiting a sliver of relief or due to lingering symptoms. Simply able to exist as I did long ago in the Before Times.

Yesterday was the monthly Migraine Chat hosted by community member Beth Morton over on Twitter, where usually about a dozen or so of us very much chronic and disabled by migraine folks congregate to share our experience around the topic of the month. This month, the topic was “Evaluating Migraine Treatments – Options & Effectiveness” which is something a lot of us do rather constantly.

My initial reaction to some of the questions made me reflect deeply on my last post regarding just how much Ubrelvy has stopped being effective and the broader implications for the pattern of reduced effectiveness for all the CGRP’s in the patient population. Having run through so many treatments long before the CGRP’s were approved and then developing complicated reactions to both the CGRP’s and the classes of medications that interact with Serotonin uptake has meant that as far as myself and my doctor’s are concerned, at this point in time there are no more viable treatment options.

I can of course choose to experiment with dosing, but even my doctor’s agree the chance of improvement is relatively small when compared to the goal of “hey maybe I don’t want to be disabled!”

I can also choose to revisit some of the CGRP injectables, despite very bad and consistent reactions it would still be my choice to completely and totally rule them out. Of course, we’re talking violent autoimmune flare-ups, being bedbound, worsening symptoms, hair loss, and that one time I suddenly got very depressed very rapidly. And with the injectables we are also looking at long half lives that don’t really make risking any of these well documented reactions an actual viable thing even my doctor wants me to consider. It’s like we know I have repeatedly experienced Serotonin Syndrome so we aren’t going to experiment with more Serotonin medications because it really isn’t all that safe!

But the Ubrelvy. I have been regularly evaluating basically my only medication option and watching it work less and less.

We had a new member join in who expressed that they want their medication to work fast and well without side effects. This was a pretty stark contrast to many people’s “I want to be a little functional” replies, which I in the moment was also echoing.

It reminded me of the early months with Ubrelvy and how it genuinely did work quickly. It reminded me of the promises Nurtec made too, that the dissolvable tablet promised fast relief. Some group of some people some where had to be experiencing this fast and sustained relief.

And today, I experienced fast and – so far – sustained relief well beyond the usual “I’m a little functional” kind of relief many of us have been told is all we can expect from our migraine meds.

This kind of hope and expectation that the drugs designed for our disease actually provide relief from our disease should be the absolute bare-minimum expectation of all our migraine drugs. Every preventative. Every abortive. Every new drug to hit the market. And not just for some temporary class of super-responder patients. But every patient whether they have one migraine a year or a migraine every day deserves to actually have relief.

I don’t want to half heartedly answer a question that pretends I do have any expectations. I don’t want to have my expectations for what “works” be defined by all accounts major failure of medications for many people if we primarily aren’t reaching no pain and no symptoms and aren’t making it anywhere near 24 hours of said relief.

So many of us need medication everyday.

We aren’t even allowed to take the medication everyday!

And the preventative medication that we can? Most of what is tolerable and sustained over the long term is not even for migraine disease, of course so many of us are still so sick. We’re treating seizures and high blood pressure we don’t have!

I want real medication that works real good. I want my real life back. I want real research on real people with the most extreme cases. I don’t want more drugs for people who have 1/4 of the migraine attacks I do. I want drugs for me and my friends. Drugs we can take every day that don’t destroy something else as a trade off.

Those are my expectations for a drug.

I don’t want to be functional ish. I want to be better. For good.

A.

Want to participate in the next Migraine Chat? Join us on the first Monday of every month on Twitter, and check out more details + past chat topics here.