All information present in this article is of my own experience and opinion and is not intended to represent or replace information provided to you from a medical professional. None of this is may be construed as medical advice or fact. Please consult a doctor regarding any questions for your personal consumption or concerns regarding any medications mentioned.
Some of you may remember having seen this photo before, and you aren’t wrong – it was my featured image for a very angry blog post regarding how industries are killing us.
I sat here today, having awoken in terrible pain, realizing how often I get asked about “what I do during a migraine attack” and it finally hit me: I don’t do anything.
Sitting on the couch, having managed to empty my dishwasher and plan out the meals I’ll need to cook, groceries I’ll need to order, and a timeline for these things to occur on before my next meal kit arrives… I was met with a really harsh reality.
The same one I was hit with this morning as I flushed the toilet and glanced down the hallway into my bedroom, curtains still closed, a subtle glow coming in from the living room.
Is this how I’m supposed to live every day? Do I – and millions of others – just get up and go through these same motions every single day until we die?
It got me thinking more about the motions and how they’ve changed – I used to have a really incredible routine that got me through the dreadful pain.
Get up. Coffee. Essential oil concoction in the diffuser. Makeup. Breakfast. Deciding if a medication was needed. Packing lunch and a snack. Work. Snack. Work. Lunch. Essential oil. Peppermint breathmint for the nausea and dizziness as I re-entered the showroom. Work. Clock out. Dinner. Medicine before bed maybe. Maybe not. Maybe just frankincense diffusing as I drift to sleep.
I relied on ice packs and oils and forcing my energy to be used only at certain times. I almost caught the hang of it all until the world of all the medicine I so desperately relied on came crashing down. Because I also mostly relied on medicine.
In between leaving one job, final exams and starting a new job, I met an incredible Headache Specialist in May of 2018.
Except, we had to break up with my medications. Get a clean slate so I wasn’t constantly stuck rebounding from my abortive medication like I had been for months.
And so, a failed round of DHE infusions left me sorely bruised, incoherent for a week, and starting a new plan for medications.
“No more than 10 abortives in a month.” That was the rule. We decided my go to fioricet would be the medication I would quit immediately as it had the highest chance for causing rebound.
Which left me with Midrin.
Little did I know that production for Midrin had been ordered to be discontinued almost ten years earlier in 2009. And as I would soon discover, the generic forms of the drugs would eventually cease production.
A few months earlier I had struggled to get the Midrin filled, I had drive to a different town where the pharmacy had some on hand – I remember thinking how crazy it was that such an old medication used quite broadly wasn’t available at just any pharmacy.
And then I ran into the issue where I was convinced the incompetence of the industry was going to kill me. I ran out of my Midrin. I couldn’t get it refilled. I was on strict orders not to take my other medication that I still had on hand.
I almost lost my job just as it had started, because I had no medication to take to lessen the pain.
After a long, excruciating weekend, I located a pharmacy that had 17 pills. And they filled my Rx, leaving the note in the photo disclosing that I was owed the remainder of the pills at no cost.
But no pharmacy could fill them.
They kept saying the medication was on back order. No dates provided for when they would have more in stock.
And Midrin ceased to exist.
And until today, I thought that was okay. I mean it really only worked for me 22% of the time. But the miracle concoction didn’t give me any side effects. It didn’t make me jittery. It didn’t alter my cognitive function. It didn’t prevent me from going to sleep. It wasn’t impacted differently but the foods I ate or the drinks I consumed. And it didn’t cause me to rebound within 36 hours.
But today, I wish I had had my Midrin – even if it didn’t work, I wish I had it.
After months of not taking any medication aside from a Sudafed here or there, I reintroduced emergency medications: DHE nasal spray (Migranal) and Fioricet.
Fioricet has been my abortive since high school, I trust it because it’s the devil I know. But it isn’t the devil that works really well or the devil that gives me a few hours of my life back.
Fioricet is the devil that may make my migraine pain dissipate but puts me in a drunken, cognitively disoriented frame of mind for more than a day. As it starts to kick in, the cold sweats and the chills and the blurriness take over. Sometimes it fully kicks in and kicks the pain out, other times it leaves me with the pain and all the drunken side effects wrapped up in a messy bow. There is no guarantee that I won’t return to the painful state I was in when I took the medication within 36 – 48 hours – which is why I cut it out totally last Spring. Since reintroducing it, this medication has not worked or reduced the pain on the three separate occasions tried.
Migranal is the devil I don’t know and don’t like. It puts me instantly back to sitting in the chair receiving my DHE infusions, head and neck feeling incredibly heavy, awful taste running down the back of my throat, and overall uncomfortable tightening sensation in my head. It isn’t as intense as the infusions as its a targeted nasal spray, but it isn’t pleasant. I’ve used it on 5 occasions since March when it was prescribed, and I’d say it may have worked once. I have $8000 worth of this damn shit under my sink so I hope it works more than just once in the future.
But, Migranal is my true “emergency” abortive. It’s the one I reach for instead of calling a friend to get me to the hospital.
Because at the hospital, they’ll insist on steroids, and that is a guaranteed rebound headache and mess I don’t have to worry about with Migranal. The only benefit of the hospital is the occasional Benadryl cocktail that’ll put you to sleep.
And my final “option” is Sudafed on the off chance that I’m really just dealing with some sinus pressure. Which, I’ll admit has happened more times than not.
I’m sure anyone reading this who is familiar with migraine medications is wondering what on Earth I’m doing listing only two as options and not even mentioning triptans… and everyone else reading is probably stuck with one of two questions: 1) well is there something else you can try or 2) what works that isn’t medicine?
So I present to you, in short some medicinal backstory:
With two classes of migraine medications existing: preventative and abortive, I’m not going to touch on preventative treatments I’ve received that haven’t worked, my existing preventative is an anti-seizure medicine – Keppra – that works better than anything else I’ve tried. Check the Migraine Resources tab if you want more info on my specific experience with other preventatives. So, I will touch on abortives:
In regards to triptans, I have tried Sumatriptan and Rizatriptan and never saw results from either. By no results, I also mean I didn’t experience any side effects.
Zomig nasal spray was a very similar experience to Migranal.
Cambia was the most interesting abortive I have encountered. And that stuff really works. Except (sorry for the TMI) it will make you have diarrhea for up to 24 hours after taking it. Which for me, was a strong enough side effect to make it ineffective.
Now, that’s a pretty short list… but their aren’t a lot of options.
There are new medications still in the works – gepants, CGRPs, and ditans so hope isn’t lost.
Which leads to non-medicinal options.
This is my primary route for managing migraine attacks, but I think it’s important to note that if we take a look at my “migraine attacks” in October we’re looking at an attack that started in September lasting 229 hours (9 1/2 days), an attack on the 8th lasting 107 hours (4 1/2 days), an attack on the 13th lasting 131 hours (5 1/2 days) , and an attack on the 20th lasting 285 hours (roughly 12 days).
So when I say managing I do not mean getting rid of.
A lot of the managing revolves around day to day routines – waking up relatively at the same time and going to bed at the same time, same amount of coffee, meals at consistent times prepared with fresh, minimally processed ingredients, and not engaging in strenuous activity without generous periods of rest.
This also means I am, for the most part, in a quiet, low-stimuli environment. Ordering groceries vs shopping for them myself. Working in silence rather than with music or tv in the background. etc.
Each individual day is about balance. If I wake up in pain, my day is going to be spent mostly resting hoping my body will return to equilibrium – which in my case equilibrium is moderate pain.
I’ve found that waking up in pain typically means I can’t do anything about it. I usually know the night before that its coming. Sometimes I don’t wake up in pain but sleep in an hour and that tells me a storm is coming and by evening I will not be functional. Regardless, my “managing” is mostly a waiting it out. Ensuring I still eat all my meals and drink enough water. Ensuring I drink extra water if my body is emptying itself more frequently. Hoping the heat from my shower at night will help in the dulling of the pain. Frankincense in the diffuser as I nod off to sleep and usually wake up alright in the morning.
Sure, I have ice packs. Sometimes they just feel good. Sometimes the pressure change from taking them off my head feels good. Sometimes it helps me slip into a nap.
Ice cream also has a great cooling effect.
My new acupressure mat seems to have some benefit. I used it on a high pain day and it greatly reduced the severe muscle tension I was experiencing and allowed me to lay down more comfortably. But it is too early for a formal review.
Managing migraine without a medication you can rely on absolutely sucks. But that is where I’m at. Managing migraine and all the symptoms when you don’t 100% know that migraine is the only condition at play, also sucks.
It really is a cycle of going through the motions day in and day out until new medication and therapy or additional diagnoses come into play.
Today all I could think of was all the treatments that are out there, some we no longer have access to, some we end up allergic to, and some that haven’t been discovered. And I got through the day, to do it all again tomorrow.
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