Reflecting on the Ways My Migraine Disease Has Changed Over the Years

Migraine has been a part of my life for so long it’s honestly easy to forget all the ways my symptoms and presentation changes through the years.

I’m especially reflective as I sit at the end of a very long year, full of insurance reviews, and tying up many lose ends of various health care conundrums. I sit with some questions, like what does it mean to be doing a little better?

But those questions really turn into more practical assessments, like what does it mean for the first time in almost three years to be only really dealing with migraine?

My health will always be riddled with complications, but right now those complications are small. I am healing from a few small bicep tears that occurred in October, and having to rest my arm and ramp up physical therapy exercises is incredibly minor compared to the onset of my first real arthritis flare, an onset of a pandemic, moving across the country, failed arthritis treatment that altered my body and eventually led to prolonged serotonin syndrome… all followed by battling Lyme disease and then getting a hormonal implant that required six plus months for hormones to level out to even begin evaluating if it was a good option, only to have another arthritis flare.

And so, for the first time since the Fall of 2019 I sit in a window that appears calmer.

It is truly impossible to evaluate the impact of my migraines over this time because so many of co-occurring conditions have side effects that present like tension headaches and cervicogenic headaches.

Throughout all of this though it is clear things have indeed changed.

I haven’t been nauseous in quite a long time.

Sure, sometimes during conversations that dwell too long on the specifics of food I still find myself getting a little queasy. Sure, sometimes I get some stomach pain but that’s usually an after the fact of eating something I already knew would upset my stomach kind of thing.

But the actual overwhelming, knock you down it’s so powerful NAUSEA hasn’t been around much.

It used to be that I’d go to the doctor’s and as I’d get there I’d pop my nausea medicine in hopes it would kick in in time for my appointment.

I used to have a regular set of just gotta eat foods I had on hand. The peanut butter toast. The frozen ravioli and the pasta sauce. The granola bars that I couldn’t risk leaving the house without.

But my loaf of bread has been in the freezer since summer, still over half a loaf. I’ve barely touched my newest bag of frozen ravioli and the last time I ate it was because of a grocery mishap not because my stomach was being difficult. I have 3 whole boxes of granola bars, untouched. The last time I reached for one to just get some food into my stomach… was sometime in July or August.

I wish I knew why the nausea went away. I wish I knew when. Even this summer, it wasn’t too big of a concern.

Another thing that’s different, is how much more consistently I am able to cook. I have continued to explore food and strive to rebuild the relationship with it that migraine diets and trigger foods took from me.

Sure, I’ve had some issues where other things limit how I can cook, but I’m able to explore more in depth recipes. I’m able to pull together my meal plans each week with a bit more ease. I’ve come to the conclusion that the actual stress of grocery shopping now is that I do not grocery shop alone so the planning and the acquisition brings in more stress than if I was doing so in isolation.

I don’t even worry as much when I simply feel bad and don’t want to cook whatever I’d planned and there’s a different kind of ease that comes with changing what I’m preparing.

Years ago, services like Hello Fresh bridged the gap for me and really taught me valuable things about portions and different ways to cook vegetables and different types of cuisine. Back then I could order a box and for a week and a half to two weeks I’d really only have to plan out one additional meal. Admittedly as a single person, those meals stretch a lot further.

I used to spend a good percentage of my time cooking.

But as my usable time has expanded just a little, I’m spending even more of my time cooking. It’s even become a place of pride where I want to share my dishes with anyone who will taste them. Yet, in spending more time actually cooking, I still have a little time leftover.

I cook all my meals at home, usually 3-4 different meals a week and I’ve been doing so on a rather uninterrupted basis for quite some time now.

That might seem small to people, but to me, it’s a huge change.

The actual head pain part of the equation still is bleak. Over this last year I’ve only had 360 hours of spread out pain freedom, which is 15 days combined. But even over the last six months, that skews closer to a single day per month with only 12 hours (some not while I’m awake) where I’m not having any migraine pain or associated symptoms. Looking only at the six months, that’s under 2% of my time.

Which again, is bleak.

I am nearing some of my goals of having less severe pain. Less time spent where my pain vastly reduces my functionality. My goal is 30% of the time or lower, which I hit for a brief period but consistently hover now between 35% and 45%.

These goals are mostly for my doctors, but for me they represent those few more hours of freedom I may have each week. They represent being able to cook more. They represent being able to be outside more (in the summer when that’s possible) and read more books.

I’ve read 9 books this year and have started a 10th.

An extra hour here or there where I can focus on a design project or my art.

Not as reflective in these numbers is the makeup of that severe pain, which lumps together pain from level 7 to 10. I have a colored pen for my daily tracking just for severe level 10 pain. Another for level 9. Both of these representing the worst of the worst, can’t even relieve my bladder kind of pain. This year, I haven’t used my 10 marker. I have across the last year had 44.4 grueling hours at level 9. This is very slim.

Of course, it is worth noting that that severe pain often occurred prior to the time I went on disability and across a few instances while trialing drugs afterward. I would attest that removing the stress of work, breaking my medication overuse cycle, and changing many parts of my lifestyle are the biggest reasons the worst of the worst is so infrequent now.

I don’t know if I’ll ever hit 30%, I don’t think with what’s currently available for migraine treatment it’s a feasible option.

Right now the only tool I really have is the Ubrelvy, which works pretty consistently at reducing my pain. It is not without complications and caveats. The first half of the year my menstrual migraines didn’t respond to it at all. This summer while dealing with arthritis flares and what I’d long called autoimmune headaches when they came up as side effects of medications – I now know these are cervicogenic headaches – my Ubrelvy worked less well.

As the seasons change, and oh boy do they change a lot here, my Ubrelvy only goes so far.

There is only so much a pill can do when the temperature changes by over 40 degrees in less than 48 hours.

Sometimes my meds mean I can sleep. Often they mean I can get through the day, get through the things I need to cook or the groceries I need to shop, or a meeting with a client.

Often, especially lately, even though I may get a whole 24 hours of reduced pain, the pain returns much sooner than more meds are allowed. I wrote about Ubrelvy access barriers this past summer and even though I now have access to the higher quantity of doses in a month, every other day for medication is sometimes still too far.

So I rely on other options like diffusing oils to get through days I can’t medicate. Frankincense has always been good for me, but I’m finding this Ella blend “Fight It” has been really helping when my sinuses are in agony. This time of year the air is exceptionally dry – we just had a brutal cold spell where humidity inside was in the 20s even with a humidifier in each room going – and I’m sure the various properties of the ingredients plus the small localized humidity boost was beneficial.

My migraines used to have longer cycles than they do living here. I think the more volatile barometric pressure swings and more regular winter storm systems could be a part of this.

Of course, so much of migraine and living with migraine isn’t all that noticeable to me since I live with it everyday and only when there’s outside interference do I understand why I have the systems I do.

There have been, minimal is putting it lightly, essentially zero outside interferences in the last few years because I have remained completely isolated as a high risk person for COVID. So it is in fact easy to forget what the real world is because I frankly don’t live in it anymore. I haven’t met a goddamn soul in my new town aside from a few pleasant neighbors and at this rate I don’t anticipate that changing.

But, the theory of outside interference is relevant to how my migraines take up space.

I do not recall mornings. My day begins a bit after 9 AM but I don’t really begin my day until 11 AM which is when most people are halfway through and sitting down for lunch.

I don’t particularly care to exist in a comparative way with others who do have lives in the morning, I simply do not.

These changes however have given me back so much of the rest of my day. In recognizing and honoring my Delayed Sleep Phase Disorder and how that strongly overlaps with my “don’t eat food before you’ve pooped” IBS needs I don’t lose a whole chunk of my day to being sick to my stomach. For quite some time that was a very big problem for me.

While I was still in the workforce, I remember starting my new job with a bright and early 10 AM meeting on a Sunday morning before opening at noon. I was so violently ill and queasy I have no idea how I managed that first shift.

It of course didn’t always result in horrible stomach pain and nausea that lasted for hours and dizziness and so on, but that was a problem for years until one day I simply stopped getting up so damn early and then made it a set in stone firm rule that I was not to be inconvenienced before 10:30 AM. That is, of course, still a little early, but shifting my schedule by half an hour when absolutely necessary is doable on a rare occasion if it is planned for.

This is a mostly unseen and unthought of part of my day.

But when I am in bed by 11:30 PM, suddenly my functional day is vastly shortened to just 12 hours time and shortened again when you consider that I am typically done for the day once dinner is over, shortening each day again to a mere 6 1/2 hours.

Those are little, often very overlooked, aspects of being chronically ill.

The differences now are mostly obsolete in the grand scheme of things.

Although parts of me can hold out hope that this space of calm and consistency I find myself in remains for a good stretch of time, bodies are not nice nor considerate of what we want and the ebbs and flows will continue. And they’ll do so no matter what choices I make.

Sick has looked like a lot of things over time, and even in this last year there has been so much dramatic variation that it seems almost foolish to highlight what’s different, but this is what it looks like now.

Still sick. Still disabled. Still inside for a lengthy foreseeable future.


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