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I wish I didn’t know quite so much about migraine. I am not a headache specialist; my degree is in law, not medicine. As a person with migraine, I have found that arming myself with knowledge helps me stay strong and fight this often debilitating disease. I wish I didn’t have to know so much about migraine, but this is the hand I was dealt, and I will do what it takes to live my life. I wanted to pass on what I’ve learned in the decade since my episodic migraine became chronic.
1. Migraine is not a Typical Headache
Nearly everyone has an occasional headache. However, migraine is not a typical headache; it is a neurological disorder. Head pain is only one migraine symptom, with many other uncomfortable, debilitating symptoms such as nausea, vomiting, dizziness, light and sound sensitivity, and more. In fact, some people with migraine don’t even have head pain as a migraine symptom. Referring to migraine as a headache perpetuates the migraine stigma and belittles the nature of the disorder. Proper migraine language can help reduce migraine stigma. The word “migraines” sounds like “headaches.” Instead, experts use ‘migraine disease’ and ‘migraine attack’ to intentionally underline the seriousness of migraine disease and encourage others to follow.
2. Migraine Exists on a Spectrum
Migraine is a spectrum disorder. While some people experience one migraine attack per month, others may have daily attacks. People with episodic migraine experience up to 14 attacks per month, while people with chronic migraine experience 15 or more attack days per month. There are some people who never get relief from migraine symptoms.
Migraine symptoms also vary in severity and disability among individuals. So not all people with migraine can truly understand the disability experienced by others. No matter where you are on the spectrum, migraine can be very debilitating. People with episodic and chronic migraine need to focus on our shared goal of seeking treatments that work and finding community support. If you want a safe space to connect with others who understand, exchange information, and feel supported, join our Parenting With Migraine Facebook support group.
3. Migraine is Genetic
Here is an overwhelming statistic from the Cleveland Clinic, “Up to 80% of people who get migraine headaches have a first-degree relative with the disease.” Do you have a family member with migraine disorder? That is definitely the case in my family. My grandma is 93 and has told me how migraine disease has impacted her throughout most of her life. While my mom did not inherit migraine, my aunt and two cousins did. Migraine is a genetic disorder, so you can also pass it on to your children. If one parent has migraine disorder, a child has a 50% chance of inheriting it. If both parents have migraine, a child has a 75% chance of inheriting it. [1] Symptoms in children look different than those of adults and may include head pain, abdominal pain, loss of appetite, pale skin color, nausea and vomiting, dizziness, and more. If you are worried about what this genetic disorder could mean for your kids, Migraine At School is a wealth of great information about migraine symptoms in kids, getting a diagnosis, and advocating for your child.
4. Neck Pain is a Common Migraine Symptom
Many people don’t know that neck pain is a common migraine symptom. In fact, 78% of patients with migraine also have neck pain. [2] Neck pain can occur before, during, and after a migraine attack. According to Dr. Rashmi Halker Singh, a neurologist at Mayo Clinic, neck pain as a migraine symptom is “actually much more frequent than nausea.” [3] It’s also common for people to think that their neck pain triggers a migraine attack, while neck pain is often the first sign that a migraine attack is on its way. I can certainly relate, as I have been living with migraine and neck pain for 20 years. Unfortunately, severe neck pain is one of my first migraine symptoms, even before head pain! I love this neck and shoulder heating pad and use it for neck pain during migraine attacks. Do you experience migraine neck pain?
5. Your Sinus Headache May Actually be Migraine
While we’re on the subject of obscure but all-too-common migraine symptoms, add sinus headache to the list. An actual sinus headache is rare and happens when someone has a sinus infection – think green snot and fever. According to the American Migraine Foundation, “studies show that about 90% of self-diagnosed sinus headaches are actually migraine.” Wow! That is shocking, but with migraine being such a misunderstood disease, it’s easy to see how this symptom could be misdiagnosed!
Nasal congestion and watery eyes are actually common migraine symptoms. Some people may incorrectly mistake these symptoms for sinus problems. Don’t label your head pain as “sinus headaches” without getting evaluated by a specialist and ruling out migraine. (I’m talking to you, husband).
6. There is More to Migraine Treatment than Medication
We all wish there was a magic pill that would help us get relief, but often the reality is that the “magic pill” can cause more harm than good (more on that later). There is no cure for migraine, but a multimodal approach often helps people manage their disease. This means you can significantly reduce the number of migraine attacks you get through lifestyle changes, dietary changes, and treatment options. Here are just some of the few things I do in addition to preventative medication to manage my migraine disease:
- Nerve blocks
- Trigger Point Injections
- Botox (Read about my Botox for Migraine experience)
- Neuromodulation device (I LOVE my CEFALY). Get 15% OFF with code: parentingwithmigraine
- Supplements – I take Magnesium and Ginger. Get a discount through FullScript Dispensary.
- Eat meals at consistent times and other lifestyle changes (Read about S.E.E.D.S.)
- Use loop earplugs to help with sound sensitivity
- Wear Avulux glasses during a migraine attack or when working on the computer. Get $25 OFF with code: parentingwithmigraine
- Ice therapy with products like Koldtec Halo – Get $10 OFF each product with code: parentingwm10
Will all of these things work for you? Maybe or maybe not. Every person is different, and there’s no one-fits-all formula. My advice is to keep an open discussion with your neurologist or headache specialist and keep trying to find what works best for you.These treatments may look different than expected, especially to people who unhelpfully suggest you take “Tylenol for your headache.” They also take a lot of trial and error to find the right combination. But they can help me live a life with less pain, which is truly magical.
7. You are at a Risk for Medication Overuse Headache if you Medicate too Frequently
As I mentioned above, no “magic pill” exists for migraine. But even so, there are plenty of pills. Did you know that if you have migraine, any medications you take for pain relief, even for a different medical condition, can contribute to medication overuse headaches? I’ll give you a minute to let that sink in. Those pain relief medications, when taken too frequently, can do more harm than good! Often migraine treatments do not work when someone is experiencing medication overuse headaches. Figuring out what is “too frequently” depends on the type of medication. This is an important conversation to have with your headache specialist or neurologist. Generally, we should limit the use of acute medication to two days per week. Personally, through the years, my body has become very sensitive to acute medications, and I develop medication overuse headaches very easily and must rely on my drug-free treatments as much as I can.
If you think you have medication overuse headaches, the only way to end the cycle is to stop the acute medications. Speak to your doctor to devise a plan for how to do it safely and as comfortably as possible for you. Unfortunately, I have had to detox myself from acute medications several times. Although it is not easy, I have felt so much better afterward.
The More You Know
The more awareness there is of migraine disorder, the more understanding we can receive from others, the more funding will go towards finding effective treatments, and the less migraine stigma we will experience. There is no cure for migraine, but there is hope and treatment options. The more you know, the more tools you have at your disposal to fight and gain control over your life. My journey through chronic migraine has been a rollercoaster, but I’ve also been proud and grateful to turn my pain into something that helps people. If you have questions about my experience, please reach out! The best places to find me are on Instagram or our Parenting With Migraine Facebook Support Group. Did you learn anything from this list? What do you think people should know about migraine?
