“Even a single thread of hope is still a very powerful thing. Grab onto it with both hands and never let it go."
Migraine impacts almost 40 million people in the US and 1 billion globally. It is a disease that is unpredictable and often debilitating, and yet finding accurate and current information can be incredibly challenging.
In our FAQs we seek to address some of the basic questions people have about migraine and other headache disorders. Please bear in mind that we are not doctors, and nothing written here should be taken as medical advice. If you have been diagnosed with migraine, or suspect that you might have it, please talk to your doctor about your treatment options.
Migraine attack: symptoms include throbbing/stabbing pain that is either slow or sudden onset, visual and speech changes, nausea and/or vomiting, light,sound and/or odor hypersensitivity, need to lie down in a quiet, dark room, often starts with pain on one side of the head or behind one eye. A migraine attack generally lasts 4-72 hours, but can also last for weeks or months.
Cluster headache: has sudden onset of pain unilaterally in the orbital, supraorbital and/or temporal areas, At least one (often many) autonomic symptoms such as red and/or watery eyes, nasal congestion and/or runny nose, eyelid swelling, eye drooping, contracted pupil, forehead and/or facial sweating, and restlessness. Cluster headache presents in a series of attacks at least once every other day, though often 1-8 times per day for weeks to months before going into remission until the next cluster.
Tension headache: generally has a slow onset, includes dull to moderate pain on both sides of the back of the head, and does not have the disabling symptoms of either migraine or cluster.
New Daily Persistent Headache (NDPH): NDPH is a rare primary headache disorder, where the attacks come on suddnely, usually in people who do not have a history of headache. It can mimic chronic migraine, but the pain is not stabbling. With NDPH, one day a headache attack begins and it is daily and unremitting. Onset is abrupt and lasts more than 3 months.
It is important to get an accurate diagnosis from your doctor so that you can receive the appropriate treatments. Some of the key differences between these three different types of headache disorders are speed of onset, length of the attack, severity of pain, other symptoms, and pattern of attacks. For example, with migraine there is often a need to lie down, with cluster there is a need to move around, and tension headache doesn't tend to prompt movement one way or another. A lot of people think they are having a tension headache when in fact they are having a migraine attack - and vice versa.
Yes, it is possible to have more than one type of headache disorder. It is also possible to have more than one type of migraine. Please see Migraine 101 for more details about the different types of headache disorders and migraine diagnoses.
Symptoms, Triggers and Causes
The most common symptoms of a migraine attack are throbbing/stabbing/pounding pain that is either slow or sudden onset and which often begins on one side of the head or behind one eye. There might be visual and speech changes, nausea and/or vomiting, light, sound and/or odor sensitivity, and a need to lie down in a quiet, dark room. Migraine attacks generally last for 4 to 72 hours if left untreated, but in some situations they can last for weeks or even months. Migraine is considered to be a spectrum disorder. By that we mean that there is a wide variety of how it presents in terms of frequency, severity of pain, symptoms, age of onset, and responses to treatments.
Cluster headache attacks ramp up to severe pain quickly. They are accompanied by autonomic symptoms such as red, water eye; congested, runny nose; forehead/facial sweating; eyelid swelling, droopy eye, contracted pupil, and/or restlessness. The attacks are unilateral and typically last 15 min to 3 hours and occur at least every other day and can happen more than 8 times per day.
Prodrome:Often begins 24-48 hours before the attack phase. The symptoms of prodrome can warn you an attack is coming. There is some current thought that the prodrome and aura phases do not necessarily come one after the other, and that not everyone appears necessarily to have both. Some of the most common symptoms in the prodrome stage include food cravings, fatigue, high energy, and mood changes.
Aura: Not everyone experiences this phase of migraine. Aura can vary person to person and can include changes in vision, hearing loss or ringing in the ears, changes in speech pattern including aphasia, hypersensitive to touch, smell, sounds or light, hearing sounds or smelling odors that are not there, vertigo or dizziness or loss of feeling or inability to move a part of the body. There is a rare type of aura called, Alice in Wonderland, where things seem larger or smaller than they actually are, and there is a distorted perception.
Attack:This part most commonly lasts 4-72 hours. While it is possible to have migraine attacks without pain, most attacks include pain, which often begins unilaterally and then spread. Frequently the pain begins behind or above one eye, and it can be throbbing, pulsing, stabbing, or pounding. Other symptoms can include dizziness, nausea, vomiting, sensitivity to light/sound/odors, nasal congestion, exercise/movement intolerance, neck stiffness and/or pain, fatigue, speech, cognitive, and mood changes.
Postdrome: Often lasts 1-2 days. Some patients will feel fatigued, others may feel euphoric. Many also experience what is often described as "brain fog."
Some of the most common migraine triggers are:
Weather-related: e.g. barometric pressure changes, humidity, bright sun, strong wind
Fragrances: perfume, cologne, scented personal care products, cigarette smoke, food scents.
Lighting: Fluorescent lights, flashing or flickering lights, bright lights
Noise: loud noises, sudden noises.
Sleep: Too little, too much, irregular sleep.
Food and drink: Alcohol, dehydration, MSG, matured cheeses, chocolate, caffeine (either too much or too little), & more.
Lifestyle: Stressful situations, lack of relaxation, exercise (either lack of or too much), travel.
Medical conditions: Sinusitis, neck and shoulder pain, sleep disorders, TMJ.
Hormones: Oral contraceptives (can help or trigger), puberty, menstrual cycle, pregnancy, perimenopause, menopause
Discovering your triggers can be a long, frustrating, and challenging experience. An experience that is often drawn out due to the everchanging nature of migraine. An experience made more complex due in part to the Prodrome portion of a migraine attack, where you might crave something and mistakenly then think it is a trigger because it is closely followed by the attack section. In addition, migraine triggers can stack, and not all triggers are the same. There is an app called, N1-Headache which can help you figure out your migraine triggers.
Determining how to manage your triggers can take a while to figure out. Here are some of the questions to consider:
- Do any of your triggers "stack" on top of each other and add to the likelihood of getting a migraine attack?
- What are the consequences of being exposed to a trigger in your life and in the lives of your loved ones?
- How easy is it to avoid or manage the trigger?
Once you know what your triggers are, it is important to discover a balance between avoiding them, minimizing them, and still living your life. For example, if scents are a big trigger for you, you may decide to isolate in order to avoid them; or... you may decide to wear a facemask to minimize the risk
This is the million dollar question! Despite a tremendous growth in research over the past few years, migraine still remainly largely misunderstood. We have been able to determine some of the pathways involved in migraine, but full understanding remains elusive. One thing we do know is that it is highly hereditary. If one parent have migraine then there is a 50% chance their child will inherit it. With two parents, the risk increases to 75!! However, not everyone with migraine has a family member with it and there appear to be other causes such as traumatic brain injury or even viruses.
As mentioned above, migraine is highly hereditary and if you have migraine then there is a 50% chance any of your children will inherit it. However, what we don't know is the level of severity, frequency of attacks, age of onset, and response to treatments. Many people first exhibit symptoms of migraine in childhood, but others start later in life such as after pregnancy. If you are a parent with migraine, be aware of any signs that your child(ren) might be having attacks. Sometimes migraine presents itself differently in your children, and you are your child's best advocate!
Medication overuse headache (MOH), also known as "rebound headaches," can happen when too much abortive medication (either over the counter or prescription) is used for migraine. The name seems to imply fault in the patient, but in fact MOH is due to a failure of treatment to provide appropriate relief both preventively and abortively.
Treatment Options and Doctors
Most often a general practitioner will be the first person you see in your migraine journey. Ideally you will want to see a doctor who has been educated in headache disorders in order to get the best help managing the disease. Most doctors will need to seek out headache education, including neurologists. There are doctors who have taken classes and certification indicating they are headache specialists. CLICK HERE to search for a Certified Headache Specialist near you.
There can be a few factors that help you decide. Having 4 or more migraine days per month is a good indication, however if you are having fewer than 4 migraine days per month and they are affecting your quality of life, you might want to talk to your doctor about preventives.
Just like how not all pharmaceutical medications work for everyone, natural remedies will be much the same way. There are several natural remedies that help some and also some will help others manage better when used in conjunction with prescription treatments. Discuss any of these with your doctor to make sure there are no contraindications with the treatment plan you and your doctor decide on.
There could be a variety of reasons why your doctor is suggesting nerve blocks. Some of the most common reasons are: intractable migraine attacks, use of too much medication for safety, and an inability to take abortive medication. There are several nerve pathways involved in migraine including: trigeminal, occipital, supra orbital, auricular, and more. If you doctor has suggested nerve blocks then we encourage you to ask them any questions you might have about what to expect and why they are suggesting this.
Clinical trials are a vital part of the process for new treatments to make their way through the FDA approval process. This can be a great way to try something that is not available yet. Speaking to your doctor about the pros/cons for your situation can help you decide.
You can make a report to the manufacturer of the medication which is helpful for their research. They are mandatory reporters to the FDA. You can also make a report to the FDA here.
Managing Life with Migraine
Yes, you can appeal any insurance denial. In an ideal situation, your doctor's office will be very involved in appealing denials from your insurance. However, you can often either jump-start or expedite the process by calling your insurance and filing an appeal yourself. If you speak to someone on the phone who says it is not possible, we suggest you ask to speak to a manager. You can appeal for a medication or device to be covered, and also you can appeal for the "formulary tier" they put a medication in.
Connecting with others who live with migraine, cluster or other headache disorders can be an invaluable lifeline. In community you can find others who understand, learn about new treatment options, ask questions about side effects and efficacy, and much more. Migraine Meanderings has a community that is found across social media, and we encourage you to connect with us! You can find all our social media accounts on LinkTree
Please check out our Resources page with links to our own groups as well as several other organizations we partner with and highly recommend.
Since migraine is largely an invisible disease, people who live with it tend to experience stigma in all areas of society. Migraine stigma can be found in schools, the workplace, college, society in general, and even healthcare. Learning how to deal with stigma is an ongoing process and there are many articles written by patient advocates with their tips and ideas. One of the most important things you can do is to learn to speak out. We strongly encourage you to take a look at our Empowering Patient Voices initiative which includes posts and videos to share, as well as opportunities to get involved!
A comorbid condition just means that it occurs at a great rate among people who have a specific disease than among the general population. There are multiple comorbid conditions with migraine, both psychological and non-psychological:
Psychological: anxiety, depression, bipolar, PTSD, and more.
Non-Psychological: fibromyalgia. GERD, IBS, arthritis, tinnitus, Ehlers Danlos, asthma, epilepsy, thyroid disorders, MS, cardiovascular diseases, restless leg syndrome, hypertension, and more.
If you are considering applying for permanent disability, check out our migraine Disability Page for tips, things to know, and medical forms to be completed by you and your doctor(s).Yes, it is possible to win a disability case for migraine, however it is not always an easy process. We have a lot of information about disability on our Migraine Disability page, including tips and hints, and fillable forms, to help your disability case: