I’ve been aware of migraine every month since November of 2012 when I got diagnosed. June is Migraine and Headache Awareness Month (MHAM) and the longer I live with chronic migraine (almost 14 years now), the more I want to help others travel a less painful path than the one I did. This is the goal of this blog every month, but in June we shine a spotlight on this debilitating neurological disease.

In 2012, the Internet was around, but not like it is today. There was no ChatGPT and no MHAM. There weren’t numerous migraine advocacy blogs. I didn’t know anyone with migraine (that would soon change). I didn’t have anyone to tell me this information. I had to learn it all myself and it was a difficult and painful process.

I’m going to try to keep it brief, and perhaps will delve more into these topics with later posts. This is just my experience and is not medical advice.

Here are 10 things I wish I knew when I first got diagnosed with chronic migraine.

Certain foods can trigger a migraine.

All forms of soy, avocados, almonds, and white and yellow onions trigger my brain into an instant migraine attack. I’ve been soy-free since 2017. That means it took me five years from the time I was diagnosed to figure that out. Doctors did not tell me this. I didn’t keep a food diary. I realized that Chinese food triggered me and then started reading labels and finding out the horrible truth that soy is in practically EVERYTHING. Not just your food, but sometimes your lotion and other skincare products. From there, I discerned which other foods trigger a migraine for me. If you suspect you have food triggers and feel overwhelmed, this article from MyMigraineTeam is a good place to start.

Weather is a huge trigger.

I walked around for years before I figured this one out. I’d wake up with at least one puffy watery eye (usually my left), intense pain on the left side of my head and neck, and an extreme feeling of illness. I don’t know exactly when I started paying attention to the weather, perhaps around 2017. With a migraine diary I deduced that barometric pressure below 30 inches, rain, and temperature changes of 10 degrees or more are top triggers for me. It’s through years of practice and refinement that I’ve developed a weather migraine protocol for when the weather favors a migraine.

You can take progesterone-only birth control pill if you have migraine with aura.

The first thing my doctor did when I was diagnosed with chronic migraine with and without aura was to take me off my birth control pill. You risk a stroke if you take estrogen birth control pills and live with migraine with aura. In my case, not only did this not stop the daily migraine attacks, but I became pregnant (blessing), and the migraine attacks became worse. I was bed-bound from November 2012-February 2013 because I was so ill. My team got me straightened out, but it took a few months. After that I got some relief here and there (2nd and 3rd trimesters, postpartum), but I could not “really” be treated because from 2012-2016, I was either pregnant or nursing.

After I’d nursed my youngest for a year, I weaned him so we could begin trying various treatments. I talked to my doctor and we agreed on the continuous mini-pill (progesterone only). It has stopped my period and menstrual migraine. I know it’s controversial, but it has been a huge blessing for me. To not be down for a week on top of weather migraine attacks is something I will never take for granted. This does NOT work for everyone, but if you’re struggling with menstrual migraine, I highly recommend you talk to your doctor.

The insurance will almost always deny you at least once (maybe more).

Appeal, appeal, appeal. As many times as you’re allowed. A good doctor will do this for you. The insurance companies expect you to hear no and give up, especially the first time. They save so much money this way. It’s evil (that’s a topic for another day). If your doctor says it’s medically necessary, then by gum, it is. You do not let a random claims reviewer dictate your care. Keep fighting and don’t give up.

I would need to wait 6 years for the right treatments to come out.

Before 2018, most migraine preventative treatments were off-label, which means they treat other conditions. I started out with the antiseizure meds Topamax and Depakote. Topamax had me weighing under 100 pounds, cold, and foggy. Depakote made me gain 70 pounds. Neither one helped the migraine attacks. Then my neurologist tried amiltriptyline, an antidepressant you take at night. It helped, but it made me hallucinate.

By 2017, I had tried so many medications with so many side effects and little to no relief that I gave up going to the neurologist. I pierced my left daith in September 2017. It worked for six months, but once it healed, I started getting frequent migraine attacks again. I felt hopeless and out of options.

In 2018, the anti-CGRP injectables Emgality, Ajovy, and Aimovig were introduced. They are made specifically for migraine. It was the first time the migraine community had medicine that was actually for them and not another medical condition. It was only then (with Emgality) that I began to find some real, tangible relief.

I didn’t have to tolerate a dismissive neurologist.

I’m not going to sit here and bash my first neurologist, but if your doctor isn’t helping you, find someone else. The faster the better.

Migraine disease is a lesson in patience.

Every treatment takes 3 months to see if it is working. I have learned over the years that if a medication was going to work for me, it would work in the first two weeks (not everyone is like this). Unless you’re having intolerable side effects, you have to give it three full months. The good old college try.

Your body can build a resistance to migraine medications and switching SUCKS.

Be aware that your body can build up a resistance to any migraine medication and it can stop working for you. This happened to me with sumatriptan and naratriptan. It’s a bummer but you have to move on. Also, when you change medication you will likely feel worse before you feel better as your body adjusts. This happened to me in 2020 when I switched from Emgality to Aimovig and finally to Ajovy. I was bedridden again for six months and still chronic and uncontrolled until 2021 when I went to a new neurologist and added Botox.

I wish I knew about migraine threshold and the SEEDS method.

Migraine threshold is the idea that not one trigger results in a migraine attack, but several triggers stacked together. SEEDS stands for (S)leep, (E)xercise, (E)at, (D)iary, and (S)tress. They are the lifestyle changes you can make to raise your migraine threshold, so that one trigger doesn’t always tip you over the edge. Migraine brains crave consistency and SEEDS is a way to get it. This is a subject that fascinates me and will probably be exploring more in the near future. I’ve been working on my sleep for almost a year now and I recently started going to the gym at my physical therapists’ practice.

Migraine support groups are critical.

I didn’t discover online migraine support groups until 2016, four years into my journey. I made some friends and the groups helped me not lose hope, especially in 2017. You are not alone ever!

I hope something on this list is useful for you. I’d love to know things you wish you knew sooner about chronic migraine, chronic pain, or chronic illness in general. When we share we learn from each other.