Living with migraine can be a really complicated thing. Especially when the migraine disease progresses to being chronic or intractable – meaning you have severe head pain at least half of the month. Often times folks in this category are experience pain or symptoms every day, just on varying severity levels.
There’s a lot of focus on gaining access to new treatments or finding the right combination of medicines. Between the preventative medications we take everyday, and the abortives we take upwards of 10 times a month it’s a really fine line that helps us manage the pain.
Except, what comes to mind when you hear that someone has taken medicine?
I know I’ve said it a handful of times, “I’m waiting for my meds to kick in” or something along those lines.
Medication reviews aside, there isn’t much awareness being brought to what happens once (and if) those medications kick in.
Measurable success for a migraine abortive is typically a reduction in pain for a certain amount of time.
This might look like taking the edge of the throbbing pain so you can function, or it may look like the pain dropping a few notches to where it’s less noticeable for the next few days.
The abortive I use most often is intended to start working after 2 hours, but within those two hours my pain often gets worse. I don’t know if this is a mechanism of the medication or if my migraine is continuing to progress while the medication is starting to be absorbed by my system.
Medication doesn’t always fix all my symptoms. And I think we overlook a reduction of pain and forget that by definition that means the pain is still very much there.
If I’m experiencing one of my horrible attacks where my mood is also impacted, the medicine may kick in and reduce my pain but I will still spend the rest of the day feeling like a groggy toddler that needs to be put down for a nap.
My temper will be absolutely flaring.
Noises oftentimes will still appear louder and more disruptive, so upstairs neighbors dropping something on the floor, doors opening and closing, the sound of the bathroom fan being on, and so on will still jolt me and contribute the overwhelming sense of frustration and irritation.
I can take my medication and count it as a day where it worked and still lose the entire day to migraine. I can have lower pain than I would have, but still be overwhelmed. I will still have spent most of the day waiting for the medicine to kick in, operating on lower energy levels, requiring more effort to complete basic tasks, and tiptoeing around myself if I feel like the medication has worked but the migraine might come back.
I can take my medication and count it as a day where it worked and still lose the entire day to migraine.Tweet
Because now that I’m fully disabled by migraine, I’m not really taking medication for anything other than lower pain. Sure I may occasionally plan medication use around a doctor’s appointment, but for the most part I need to take an abortive the maximum amount of times in a week.
If I wake up with a migraine, or the migraine trickles in after I’ve had breakfast and slowly begin starting my day, oftentimes I have to come to a full stop.
I’ll take my medication, hydrate a little extra, sometimes even eat a little more because I don’t like having medication on an empty stomach. But then I usually have to lay down.
Maybe I’d planned to run to the store, get a few things organized, and cook dinner. A rather eventful day for me.
But instead, I’ll likely lay in the dark for what would’ve been my two most productive hours. And that’s to say the medication kicks in as early as I hope for.
If it doesn’t kick in after two hours, usually it has taken a small amount of the edge off. I’ll probably get up and try and find something small to do.
Perhaps I’ll take out the trash, or check on my plants to see if any need to be watered. Maybe I’ll wipe down some leaves.
Now it’s mid afternoon, I have to account for dinner. But the cycle of migraines I’ve been in and some digestive discomfort have left me in a cycle where I haven’t been cooking. I check to make sure my ingredients that I was going to use for dinner are still fresh so that I can plan to cook them tomorrow. I’m probably mentally making a list in my head for planning to grocery shop, I am getting low on food and since I’m pushing out a meal again I should probably start accounting for my future energy required to order groceries.
I might lay down again. Having thought about food and done a small task, the pain has ramped up again. It isn’t as severe as when I took the meds in the first place, but it begins to weigh on my mind that there’s a chance it won’t kick in late like it does half the time. I try and push that thought aside, hoping that more rest will work in my favor.
If I sit and dwell too much on the what ifs my mind goes to a dark place. I punish myself for having taking medication. I begin to question if I took the right one. I go over the timeline for this migraine attack wondering if it’s worth trying a different medication within 12 hour timeframe where I know my meds are most effective. I know I have until just before bedtime to decide, so if the meds do kick in late that will be my deciding factor.
It’s now late evening. I’ve decided on some frozen ravioli and sauce, easy and filling. For whatever reason, I check the sauce and its spoiled. It’s too late to order dinner from a restaurant and I’ve got no other prepared foods I can quick heat up. Thankfully, a friend of mine is quite the chef and helped me identify that I had the right ingredients to blend up my own pasta sauce quickly, without requiring a ton of effort.
After dinner and a shower I can tell the meds have kicked in late. I’ll be able to watch some gentle tv.
Despite taking medicine, I lost the entire day to migraine anyway.
The next day, I can feel the migraine coming and going. The weather of course has been unkind, so the attacks come back to back to back.
I want to do the things I missed the day before, but the intermittent stabs let me know that I should continue to rest. Perhaps it’s still the migraine from the day before with the meds only partially working, perhaps not. But I’m groggy and uninspired and if the pain creeps back in I simply cannot take any additional meds because it is too soon.
For two days after each medication dose, I have to make the choices that will prevent attacks from worsening simply because I cannot treat them.
The week progresses and I find myself in the same place once again.
This migraine came on fast and I took my meds rather quickly. I had a brief list of things I wanted to get done.
Again, the migraine worsened as I waited for the meds to kick in.
By mid-afternoon, they had not kicked in. I was doing small loads of laundry, so that was my small task that I filled the time with, laying back down between each load. Waiting.
The meds kicked in a bit after the three hour mark. I decided to tend more to my plants. I found some bugs that required some research and some cleaning and some products from the store. I placed an order feeling alright enough for a quick drive to the store.
But waiting for the email saying it was ready, the volatile weather was competing with my meds and they began to stop working.
The entire room began to spin, my vision faded rather fast, and I couldn’t hold any conversation without intense nausea taking over. I would not be able to go get my order and had to find a quiet place to sit, try and eat to just make sure I wasn’t experiencing signs of dehydration.
It felt as if I was awake but not fully conscious. I was not connected to my body and the world around me felt distant.
The head pain returned by late evening.
I went to bed in pain and awoke in pain.
I would spend another day taking it easy, pain coming and going, this time having to force myself to prep the food that has been in my fridge for almost a week as it surely will go bad if I don’t cook it today.
Each time, the medicine technically worked.
Yes, sometimes it does work better.
Sometimes I do lay down and lose a few hours but wake up, bring myself back to life with lunch and have energy to get done the things with my day that I need to. Despite that, even on these days I still operate in the back of my mind that I don’t want to do anything too intense that might cause the meds to stop working.
Sometimes, when it kicks in late it still lasts well into the next day or two, so I could say that maybe I’m treating today for the hopes of a lower pain tomorrow.
But it is never no pain.
At this stage, my migraine abortive medications help me have lower pain more consistently. They help me reduce how many times each month I am in absolutely unbearable pain. They allow me to lose entire days but perhaps feel just human enough to enjoy a horror movie that evening and sleep a bit more soundly through the night.
I am just as disabled with the medication as I am without it. I am just a tiny bit more comfortable.
It makes me wonder what the point is. Why are we accepting this level of “relief” as substantial and groundbreaking? Do our doctor’s even understand that this is really all we get? That this bare minimum is all we’ve ever gotten?
I live a life where my good days allow me to wipe down the leaves of my plants, repot a few, and sit in my space surrounded by life as the sun cascades through with my records softly spinning.
And this is only because sometimes I have medicine that works, but from most outside perspectives, the reality of treating migraine attacks as frequently as it is safe, maybe it doesn’t actually work.
I need you to see that.
That this miniscule relief cannot be taken as actual, measurable, success.
This is merely the means to scraping by and surviving.
We are barely surviving.