My Journey With Chronic Migraine

How to navigate the healthcare system to get the care that YOU need

The author, on vacation without a single migraine for the first time in 4.5 years

Recently, a colleague posted about her struggle with migraines, asking for dear God any and all non-pharmaceutical advice while she waits for the appropriate doctors’ appointments. As I typed a treatise, with multiple "wait one more thing" "jk jk, one more one more thing!" additional comments....I realized I have a lot to say about this. 🤣

So, as I am big on sharing personal health stories in the hopes that it can help someone else, here we go.

My Journey With Chronic Migraine

(chronic disease number 3out of 3 for me thus far, but who's counting?)

When I was 6 months postpartum with my son, I got my first migraine. Ever. As my headache ballooned and expanded into something unfamiliar and unmanageable, I thought, huh, this must be what people are talking about when they say they have a migraine.

I've had many headaches over the course of my life, particularly as a teen. I got loads of them back then, but never anything like this.

But now, the migraine kept returning, lasting longer each time. Within 2 months, I was in my doctors office, as over the counter options were not helping. She sent me to an eye doctor to check my vision, to make sure it wasn’t coming from there. (which, by the way, I had the exam during an active migraine. 0/10 stars. Do not recommend) But, I have better than 20/20 vision. So, not the issue.

I was also already trying all the natural things - dietary approaches, massage, chiropractor, essential oils. Nothing made a difference. I started acupuncture, which was nerve wracking as it was new to me. It was very relaxing, and sometimes helped, but again, was most definitely not a solution.

Thankfully, my PCP referred me to a neurologist asap, and we started working on “building my case” for insurance. Because, with chronic migraine, the trick isn’t how much you’re suffering - it’s how much your doctor can work the system to “prove” to insurance that you need the medications that your own doctor knows will most likely help you.

From day 1 my neurologist suspected the migraines were largely tension based (note above how I was already doing ALL OF THE BODY WORK/BODY AWARENESS THINGS) and as such, I would be a great candidate for Botox. But, botox is expensive, and insurance won’t cover it (and most really useful migraine meds, honestly) until you prove that you’ve failed a bunch of other stuff. So, we got on the wagon wheel of trial and error with a bunch of different medications.

By this point, I was qualified for chronic migraine treatment, which is defined as experiencing 15 or more headache days per month. You read that right - half the month or more with a migraine. By this time, I was experiencing migraines that lasted anywhere 1-3 weeks, often with a break in pain for 12 hours, a day, maybe 2 or 3 days if I was super lucky - and then it would come crashing back down on me again. I was fortunate in that the pain was not too bad - but the migraines absolutely annihilated my executive function, making work, parenting, and just kinda … personing….next to impossible.

As medication/insurance proving roulette progressed, I was also sent to an endocrinologist to check hormones. This made sense, as they did get worse around menstruation, once that returned for me - and they HAD started at the 6 month postpartum mark, when we moved from exclusively breastfeeding our baby to introducing solids. So, it made sense that a hormonal shift could be a possible underlying cause, or at least a contributing factor.

This endocrinologist flat out told me that “hormones don’t cause migraines.” I was like, lady, how are you an accredited professional. There is LITERALLY A POSTER IN MY NEUROLOGIST’S OFFICE detailing the impacts of menstrual migraine. 🤦

She also told me that my hormones were fine, but also, not a reliable source of information as I was currently breastfeeding. (something something women’s healthcare is abominable something something we need more research something something this is bullshit).

Anyways, after that delightful dead end, and more slogging with meds, we finally got the botox approved…and lo and behold, it worked. Things started to get better. After a bit of that, we added a monthly Aimovig injection for added coverage. Now, by their powers combined, the other alternative stuff ACTUALLY WORKED. Instead of experiencing an endless slog of migraines, I’d have good days and bad days, with acute onset meds that actually had a chance of working. And things like chiropractor or acupuncture to break out of a bad cycle actually worked.

Now, life is a much better picture. I’m in a good place right now, with minimal migraines - and the ones I do get, I can most often function through, and address with alternative treatments or lighter meds.

Here’s a breakdown of what’s helped me, in order of helpfulness.

1. Botox

2. Aimovig monthly injection (several others in this class, like ubrelvy, emgality, etc, are also equivalent)

3. Nurtec for breakthrough or prevention. No side effects. Great drug

4. Sumatriptan (heavy duty triptan. Must be able to lay down for an hour to take it, as I cannot stay upright. Don’t love it)

5. Rizatriptan - a milder triptan with way less side effects. Works now that overall coverage is way better

6. When stuck in a migraine cycle: acupuncture with a **doctor of acupuncture** (this training difference really mattered for me in terms of results), chiropractor, or massage (least effective) to try to break the cycle

7. Magnesium and B12 supplements (I started these early on with my neurologist. There’s a specific day dosage you must take. I didn’t notice any improvement with these alone - as in, they never eliminated a migraine - but if I miss a dose, I do get more of them)

8. Essential oil headache blend - not a curative, but reduces pain, and can use it as much as i want: In 10 ml glass roller bottle, put:

25 drops peppermint

15 drops lavender

10 drops frankincense

5 drops each copaiba, marjoram, turmeric

Top off the rest of the bottle with your preferred carrier oil (I use fractionated coconut oil)

Yes, it seems like a crazy amount of peppermint. Yes, really do use that much.

There are probably other things I’ve tried that I’ve forgotten to mention as well.

In conclusion, chronic migraine is brutal, debilitating, and very personal.

Unfortunately, there is no one-size-fits-all solution. I’ve tried loads of different remedies that others swear by, that did absolutely nothing for me. In most cases, relief comes from a combination of approaches, and a LOT of trial and error. It takes time. And, navigating the American healthcare system is brutal and unnecessarily unfair. Working with a neurologist, who knows how to navigate this messed up system to eventually get you to the appropriate care that you need - is in my opinion your best bet.

I wish you support and speed on your journey to a pain-free future.