An Open Letter to Family and Friends of People With Migraine

There are some realities of migraine that none of us can escape. It affects more than a billion people worldwide, between 40-50 million in the United States alone and around 4 million of those have chronic migraine (15 or more headache days a month with 8 days being migraine). These are common symptoms of migraine:

• Pain (mild to severe)
• Dizziness/Vertigo
• Nausea/Vomiting
• Extreme sensitivity to light/scents/sound/motion
• Tinnitus/Ringing in the ears
• Aphasia (Difficulty speaking)
• Vision loss
• Visual phenomena (shapes, spots, colors, flashes of light, zig zag lines, halos etc)
• Weakness or numbness in face and extremities 
• Olfactory hallucinations (smelling odors that aren’t there)
• Intense fatigue/Weakness
• Neck pain and stiffness
• Irritability/Excitability
• Food cravings 
• Depression/Anxiety
• Sleep disturbances
• Mental fog/Difficulty concentrating
• Increased urination and diarrhea 
• “Alice in Wonderland” sensation (an altered perception of space and objects or having an out of body experience)

While migraine happens on a spectrum, meaning some of us are on the mild end and others on the severe end, none of what is listed above can be construed as ‘just a bad headache’. If you don’t experience migraine yourself, think back to your last headache and then see if you had some, a majority, or any of the symptoms above.

Regular headaches don’t induce you to smell cigarette smoke in a house where no one smokes, or to drink water and have it taste like root beer. They don’t have the visual aura or dizziness that will blind you to everything else and make reading, driving and even walking impossible. They don’t cause vomiting, nausea and such overwhelming exhaustion that you can’t get out of bed or take care of your children. And they don’t linger from one attack to the next, never allowing so much as a day to go by without experiencing symptoms. Migraine is typically thought of as a very bad headache. Extreme head pain can be part of it, but some don’t experience head pain at all. 

I write this with the hopes of trying to explain to family, friends, co-workers and employers exactly what a person with migraine and chronic migraine has to contend with during and between attacks. It’s not an attempt to make anyone feel bad or to shame anyone at all. I think we need to have an open conversation about what migraine is and what it isn’t. 

What migraine Is

Migraine is a neurological disease for which there is no cure. It is a largely invisible illness. There is no easy way to test for migraine and ‘prove’ that you have it. It is a collection of neurological symptoms that make up the disease. Migraine can progress through four stages, though not everyone will have all four stages of an attack. 

The Four Stages of Migraine

Prodrome: One to two days prior to the actual migraine attack, a person with migraine may notice changes that will signal an attack is on the way. These include mood changes, increased urination, food cravings, neck stiffness, difficulty concentrating (brain fog), nausea and uncontrolled yawning. 

Aura: This might occur before or during an attack. Aura is a completely reversible symptom that will usually last between 20-60 minutes. They are frequently visual but can include other symptoms as well. Some common aura are vision loss, visual phenomena (flashing lights, zig zag lines, halos, colors etc), difficulty speaking, weakness and/or numbness in the face or extremities, uncontrollable jerking or other movements or smelling odors that aren’t there. 

Attack: The attack phase will usually last between 4 -72 hours without being treated. And whether or not they can be treated depends on how frequently a person has attacks. For those with chronic migraine (more than 15 headache days a month with 8 of them being migraine), treating each attack comes with the risk of the medication used to treat the attack actually causing a rebounding attack. The pain during an attack can be mild to severe. There is usually some degree of light sensitivity and sensitivity to noise and sometimes smells as well…these symptoms can be excruciating. Some experience nausea and vomiting. 

Postdrome: This is the stage of migraine that gets the least attention, but really can be as debilitating as all of the other stages put together. There is usually extreme exhaustion, difficulty concentrating, brain fog, dizziness, anxiety, depression, sensitivity to light and sound…and this can last for a day or two. 

Types of Migraine

Migraine Without Aura: Pulsing or throbbing pain (usually on one side of the head), pain that worsens with activity, light and sound sensitivity, nausea and vomiting. Migraine without aura lacks the warning phases of prodrome and aura.

Migraine With Aura: All of the same symptoms as Migraine without aura but also includes “a series of sensory and visual changes that can range from seeing black dots and zig zags to tingling numbness on one side of the body, or an inability to speak clearly”. (American Migraine Foundation) Aura can occur before or during an attack and can last for 10 to less than 60 minutes. Aura can cause anxiety for those about to experience an attack, especially if they don’t have a medication that is effective at aborting the attack. Attacks can last from 4-72 hours.

Chronic Migraine: Head pain on more than 15 days per month with 8 days being migraine attacks. These can vary in level of severity and can even sometimes be mistaken for sinus headaches. One attack can often just be ending when the next one starts leading to daily symptoms. My battle with chronic migraine was very long with daily symptoms and attacks for 18 years before finding some relief.

Vestibular Migraine: These symptoms include dizziness and motion intolerance with respect to the head, eyes or body, spontaneous vertigo attacks with nausea and vomiting, light and sound sensitivity, tinnitus (ringing in the ears), loss of balance and coordination, (VeDA) a sense that the surroundings aren’t real and Alice in Wonderland syndrome or a distortion of perception of the world you live in. The constant dizziness and not being able to orient yourself in the world is anxiety producing and often leads to being homebound for a period of time while trying to manage this disease. Imagine trying to navigate life while feeling like you are always walking in a bounce house or floating away, never finding the solid ground beneath your feet. This article explains in more detail what Vestibular Migraine is like.

Hemiplegic Migraine: This type of migraine has symptoms that mimic stroke. Weakness and tingling on one side of the body or face and often a pins and needles sensation. This is aura and can last for several hours to a few days. It may or may not have significant head pain with the attack.

Silent Migraine or Aura Without Head Pain: This has all of the symptoms of migraine with aura without the head pain involved. It can be very confusing because the patient experiences the nausea, dizziness, light and sound sensitivity along with all of the visual auras…but the head pain doesn’t evolve afterward.

Cluster Headache: One of the most severe types of pain you can experience, these headaches are called “Suicide Headaches”. They typically come with a runny or stuffy nose, watery and swollen eye and burning pain that encompasses the eye, temple and can run around the back of the head which follows the path of the trigeminal nerve. These attacks occur in clusters that can last for weeks or months and then have a period of remission.

The Cycle Of Chronic Migraine

The reality is that if a person has a chronic migraine condition, having 2-3 attacks per week, they are having daily symptoms. By the time one attack is ending (the ending of the postdrome stage) a new one is starting (the beginning of prodrome). Some of the biggest problems facing those with a chronic migraine condition is that they are always in a state of brain fog and light and smell sensitivity at the minimum. We struggle to find the words needed to express ourselves and the ideas forming in our brains. (Gil-Gouveia & Martins) The lights in an office are painful to us and the perfume/cologne that are worn will linger on us long after a hug…and most of us don’t know how to refuse the hug that will end up making us sick all day. It also lingers in the air around the person wearing it long after their ability to smell it anymore has faded. However, we are like bloodhounds during an attack and can often smell things that others would never notice. 

What migraine Isn’t

I think the above shows that migraine isn’t just a bad headache. Or the worst headache you’ve ever had. I’ve heard it described as such many times. Pain can be a part of it, although some people have all of the other symptoms and no pain. It’s hard to reframe what has been thought about migraine for so long. Even within the community, most still refer to attacks as ‘migraines’. But this is almost nonsensical when you think about it. Do we refer to the attacks that people with epilepsy have as epilepsies? No. And that’s because there is an understanding that epilepsy is a disease condition and seizures are the attacks. Migraine is still thought of as bad headaches so the general term of ‘having migraines’ is still acceptable. But it’s really not. We have migraine attacks that encompass a whole slew of neurological symptoms, one of which might be intense head pain. 

What does all of this mean to you, the person without migraine?

I’m not trying to get everyone in the world to go scent free…although, if someone in your office asks you to refrain from wearing a scent or burning a candle, understand that it is not a personal attack. Those scents are permeating the air and that’s something we all have to share. Once again, the reality is that one person’s joy can be another’s sorrow and we all have to be sensitive to how we can make the world an easier place to navigate. 

If your employee asks for an accommodation around lighting, understand that this isn’t asking for preferential treatment, but a way for them to be more productive at work. A way to support their ability to perform and to ward off one of the biggest problems people with migraine have, light sensitivity. Many employers will remove overhead light bulbs in an effort to help the employees with this problem. It is probably the easiest fix out there. 

If your family member tells you something personal about their migraine journey, whether it is about their problems with cognitive function (this is deeply personal to many of us and almost shameful to have to admit or to ask for help with), light or scent sensitivity, not being able to eat your specially prepared food because they are trying a special diet, setting limits on exercise and movement, or sticking to a routine even during vacation…try to listen with an open mind and an open heart. Be willing to try to understand the often indescribable problems that we face on a day to day basis with migraine. While some people may use it as an offhand, call-off-from-work excuse, for the rest of us, this is our life. 

The Invisible Illness

Chronic migraine conditions are largely invisible illnesses. Unless you catch one of my attacks where my tongue goes numb and you can hear the slurring of my speech (is she drunk or on drugs?) you might never be able to tell that I’m having an attack. If you know me well, you’ll probably be able to tell because of the dark circles that appear under my eyes and apparently sometimes one side of my face turns red. When I’m having a conversation with you and I forget common words like refrigerator and have to describe it as the ‘cold box in the kitchen with food in it’…that’s another clue. Like so many other people in this world, I want to be thought of as smart and knowledgeable. But chronic migraine so often makes me feel stupid because I can’t finish a thought. I find it difficult to participate in conversations because they are usually moving faster than my brain can find the information I’d like to share. This is hard to admit in an open letter to, well, everyone. 

These are the realities that I wanted to share. I wanted to share it in a way where others could forward this letter, not as a ‘see you should have listened to me’ kind of thing. But more as a conversation starter. If you receive this letter, you know someone with migraine. They wanted to share some information with you. There is no judgment attached. Sometimes it’s hard to have conversations with family, friends and co-workers without a prompt. Consider this a prompt. I hope you all take the time to get to know each other a little better and a little deeper. Find out how to support each other on this journey we call life.

If you personally have migraine and want to know more about it or need some additional support, I invite you to join our private Facebook group called Migraine Strong to talk with others who have been there and just get it. If you don’t have migraine and are looking for more information, I recommend reading other articles on this site and liking and following our Migraine Strong Public Facebook page, as well as Instagram, Twitter and Pinterest. Thanks for reading my letter. 

References: Gil-Gouveia, R & Martins, IP Curr Pain Headache Rep. 2019 Sep 11;23(11):84. doi: 10.1007/s11916-019-0824-7.