7 Tips That Have Helped Me Navigate Life with Chronic Migraine

Finding support and learning more about migraine can help you feel more confident managing the condition.

One part of living with chronic migraine I find the hardest is the loneliness it can cause. It’s exhausting to feel as if I have to constantly explain my situation or justify why I have to skip out on social events. Finding a community going through similar experiences has made all the difference.

The migraine community has helped me connect to resources and find support. If you live with migraine, here are some tips you might find helpful.

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Pay attention to new research

Staying on top of the latest research can help you find new treatment methods. New discoveries and developments in the science behind migraine and potential treatments are made every day. You can also learn more about different types of migraine and explore your potential migraine triggers.

The National Headache Foundation offers pre-recorded webinars on a variety of topics related to migraine.

You can learn about additional studies through organizations like the National Institute of Neurological Disorders and Stroke, the American Headache Society, and the American Migraine Foundation.

Find a support group

Connecting with people who understand your experience can be a relief because there’s no need to explain your story over and over. They understand and can empathize.

Having a judgment-free zone is great because you can discuss frustrations and concerns. You can also get tips and recommendations about doctors or treatments you might not otherwise be able to find.

You can connect with a group online or in person. Bezzy Migraine is an online platform for peer support, relatable stories, and advice. It features several forums where you can chat with other members. A community guide hosts weekly live chats every day at 5 p.m. Pacific time.

Miles for Migraine and Pain Connection are two other great online support groups.

These groups can provide support and solutions for people living with migraine by offering professional advice, treatment options, information on clinical trials, and other helpful resources.

The Coalition for Headache and Migraine Patients (CHAMP) features groups and advocacy opportunities on its website. They also host a conference, Retreat Migraine, designed specifically by and for people living with migraine.

Download migraine support apps

Using a migraine-specific app can help you notice patterns and identify triggers.

Migraine Buddy is a free app with trackers for sleep habits, daily symptoms, ways to record your attacks, and a pressure variation forecast. It also features insights and new updates on migraine and headache research.

N1-Headache is another useful migraine app. It allows you to track your activities, habits, moods, and sleep cycle. It also creates reports you can save as a PDF and share with your doctor.

Manage My Pain Pro is an app for anyone with chronic pain. You can describe how you’re feeling and record your pain scale for the day. It also offers opportunities to reflect on the good parts of your day. Like N-1, it creates reports you can share with your doctor.

BetterSleep is a sleep app. Because poor sleep habits are often linked to migraine attacks, many people find that getting better sleep can help. The app tracks your sleep and has different soundscapes to help you fall asleep more easily.

Listen into podcasts

Hearing other people’s migraine stories can be enlightening and empowering. There are several migraine-focused podcasts available online.

The Association of Migraine Disorders’ podcast “Spotlight on Migraine” features interviews on topics like stigma, brain fog, and various treatments.

“Move Against Migraine” by the American Migraine Foundation is another great podcast that covers a wide range of topics. Subscribe to this one to learn more about topics like insurance options, migraine in teens, and cluster headaches.

If you’re short on time or energy, “Migraine Minute News Update,” also from the Association of Migraine Disorders, has short episodes on new migraine research.

Read stories about other experiences with migraine

Many books cover migraine.

“All in My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache” by Paula Kamen is a story of one woman’s experience trying many migraine treatments, from Botox to holy water.

Kamen’s story ranges from heartfelt and raw to comedic. She captures the full spectrum of experiences one often goes through when navigating chronic migraine.

In “A Brain Wider Than the Sky: A Migraine Diary,” author Andrew Levy writes about his experience with debilitating migraine attacks that kept him bedridden for months. He also takes a look at well-known historical figures who lived with migraine.

Dr. Oliver Sacks was a bestselling author, doctor, and professor of neurology. His book, “Migraine,” examines all the ways migraine can manifest, ​​including visual hallucinations and distortions of space, time, and body image.

Find financial support through patient assistance programs

If you’re facing financial constraints due to migraine, options are available.

The Patient Advocate Foundation’s Co-Pay Relief program was developed to help people cover their medication expenses. You can apply on their website.

The Medicine Assistance Tool is a search engine that helps people learn more about resources available through biopharmaceutical industry programs.

Many hospitals and private practices also offer patient assistance programs or payment options that allow you to pay your bills in installments.

When you get your bill, give it a close read to make sure you’re not being incorrectly charged for anything.

You can also contact the hospital or doctor’s office and ask to negotiate your bill down. It may take a few tries, but negotiating can help lower the total amount.

Look into clinical trials

If you’re unhappy with your current treatment plan and feeling discouraged, it’s worth investigating whether you’re eligible for a clinical trial. You can check out ClinicalTrials.gov.

Clinical trials are often highly specific. You’ll need to meet all their qualifications. Your doctor may be able to help point you in the direction of clinical trials that may suit you.

The bottom line

Navigating chronic migraine can be challenging. Beyond the physical symptoms, you may also be contending with emotional effects, social pressures, and feelings of loneliness.

No matter what you’re going through, and no matter what your migraine journey looks like, remember that you are not alone.

If you’re looking for support, advice, or connection, the Bezzy Migraine community is here for you.