January 19, 2022
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If you aren’t feeling supported, keep looking for the right people and healthcare professionals. You don’t have to live with migraine all alone.
As the youngest in a family of nine children, I used to use illness to get attention. I had no idea what I was in for when I started getting headaches around puberty. I remember the first time I had a headache that lasted for days.
The days went by while I gobbled aspirin like candy, but the pain didn’t subside. Eventually, the headache went away, but just when I thought the coast was clear, I had another one.
These headaches were different from the ones I usually had. This pain felt like someone was rearranging the rooms in my head, knocking down walls with hammers. No one understood how I was feeling.
Time passed like this until 10 years had gone by. By that point, I’d seen multiple doctors and received many other diagnoses, from depression to an actual brain tumor.
Still, no one had ever given me a real name for these headaches. I think the first time I heard them called “migraine” was after I had brain surgery and the headaches kept coming back.
Unfortunately, my experience is not unique. People can go years with migraine headaches, questioning the source of their pain, before they figure out what they have. Finding relief can take even longer.
Despite more than 36 million Americans being diagnosed with migraine, it can feel like you’re all alone. Here’s my advice on how to feel less lonely with migraine.
People with migraine are some of the strongest people I know. How many other people face the day while a jackhammer goes off in their head?
Yet, sometimes it’s easier to minimize or hide the pain than to have someone tell you what your migraine feels like. Oftentimes, hearing others’ attempts at comfort can be frustrating. I understand that people mean well, but I also know it takes more than drinking water or a having a good night’s sleep. Unless you have migraine, I am not listening to your advice.
It feels bad to have your pain minimized. That’s how I feel when people say things like, “It’s just a headache.” It’s not just a headache, but sometimes it’s easier to nod and ignore someone who doesn’t get it than to explain yourself.
Still, there’s nothing worse than suffering in silence. That’s why it’s important to find people you can talk with about your migraine attacks. Surround yourself with supportive people who will listen, and know what you need when you’re in pain.
Find others with migraine who you can learn from and share experiences with. Even if you don’t know anyone in real life who has migraine, online communities can help connect you with people who understand.
Finding the right doctor can take time. Chronic migraine is complex, and there’s not currently a specific test to diagnose it. Instead, physicians rely on what you can tell them about your headaches in addition to other tests to rule out different conditions.
I feel less lonely having a doctor who knows me and is willing to work to make me feel as good as possible. Your doctor might not be able to give you total relief, but you should feel like they’re trying everything they can. If you’re providing information, they should listen to you with open ears.
To give your doctor as much information as possible, keep a symptom diary. You can keep a paper diary or use an online tracker. Even if you’ve had migraine for a long time, a diary can help you and your healthcare professional understand your pain, when you feel it, and if there are any specific triggers.
For me, tracking my symptoms helped my doctor identify that I was experiencing menstrual migraine. Once my doctor saw that, she was able to try a new treatment that lessened pain from migraine around the time of my period.
When you have an appointment, be prepared to tell them how your treatments are working and if there are other treatments you think might work. Ask questions about new treatments and whether your doctor thinks they could work for the type of migraine you have.
If your doctor isn’t collaborative, it may be time to find a new one. You deserve it.
Chronic migraine can be a lifelong condition. It takes time to learn how to speak up about your pain and build your support network.
With migraine, you’ll have good days and bad days. Go easy on yourself on the bad ones. We need to be our own biggest advocates and not blame anyone or anything for the pain we experience.
If you aren’t feeling supported, keep looking for the right people and healthcare professionals. It can be challenging, especially if you live somewhere with limited healthcare resources.
Online resources, like Bezzy Migraine, can help you find information and connect you with people who understand what you’re going through.
You don’t have to live with migraine all alone.
Medically reviewed on January 19, 2022
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