Do you know what I go through?

I found a list of common migraine symptoms – and when you read this remember that I have most of these 100% of the time – as in they never go away.  Let that sink in for a moment.

migraine-symptoms

and migraine-is-more-than-a-headache-the-many-symptoms-of-migraine/

Lets go over some of them together off that list.  I will add some of my own that are missing and mark the ones that don’t pertain to me.

Visual Aura (before the pain begins)

  • a bright shape that spreads across the visual field of one eye and appears to block some or all of the vision; can be seen whether the eye is open or closed – I have this almost 24 hrs a day
  • flashes of light and color  *  24hrs a day 
  • wavy lines  * 24hrs a day
  • geometric patterns  *Not really
  • blurred vision  * 24hrs a day 
  • partial loss of sight  *Not really
  • *I will also have hallucinations of things that are not there (spiders/bugs/shadows) mostly caused by medications that I take to prevent and treat the migraines/daily headaches I have.

Sensory

  • numbness or tingling on the face or upper extremities * 24hrs a day 
  • a sense that limbs are a distorted shape or size *No
  • heightened sensitivity to lightsound, and smells  * 24hrs a day 
  • smelling odors that aren’t actually present (like natural gas or something burning)  *happens a lot – mostly Gasoline, burnt bread, chocolate(that I am allergic to) dirt or dust, grass, something is wet or damp…
  • skin sensitivity and intolerance of being touched (allodynia)  *happens a lot
  • *things will feel overly cold or hot to the touch…or if it is a little cool to the touch I can’t tell if is it damp or not, and not in like a normal way, like my nerves cannot relay what it is they feel correctly – and the reaction of something being too hot might be delayed. 

Motor

  • partial paralysis  *Not really
  • weakness or heaviness in the limbs on one side of the body  * happens a lot
  • *with chronic fatigue comes chronic pain – so I have pain that radiates all over my body.  a migraine will make that worse.  also if I have had a CFS flare, it makes the daily headache worse or a chance of a migraine higher.

Cognitive

 Digestive
  • food cravings (particularly for carbohydrates, candy and chocolate)  * 24hrs a day 
  • stomach rumblings * 24hrs a day 
  • constipation  *I have IBS

Fluid disturbances

  • increased thirst  *Not really
  • frequent urination*Not really
  • bloating/fluid retention *Not really

Mental/Personality

  • fatigue, lethargy  *I have Chronic Fatigue Syndrome
  • mood changes  * yes
  • irritability  *sometimes
  • high energy  *sometimes
  • depression  *yes – I want to cry all the time
  • anxiety  *And panic attacks – thank you Botox for that.  I have not done the treatment in years yet I still have the panic attacks – plus I worry all the time that my support system will have enough of all of this one day.  Also adds to my depression 
  • nervousness  *yes see above
  • euphoria, feeling of intense well-being  *yes, followed by depression and feeling like it is all going to go wrong.
  • *I feel all alone – most of the time.  

Digestive

  • nausea  * 24hrs a day 
  • vomiting  *sometimes
  • intolerance of food odors  *sometimes
  • loss of appetite  *Sometimes
  • diarrhea  *Not really
  • constipation  *most of the time(IBS)

Skin

  • paleness  *Not really
  • cold, clammy hands and feet  * 24hrs a day 
  • facial swelling*Not really
  • goose bumps*Not really
  • bloodshot eyes  * 24hrs a day 
  • black circles around eyes  * 24hrs a day 
  • sweating  * 24hrs a day worse at night

Respiratory

  • frequent yawning    * 24hrs a day 
  • sighing  * 24hrs a day 
  • hyperventilating  *Sometimes
  • nasal congestion  *sometimes
  • runny nose  *Sometimes

Circulatory

  • changes in blood chemistry *Not sure
  • changes in blood pressure  * 24hrs a day 
  • blood vessel dilation  *not sure
  • difficulty regulating temperature  * 24hrs a day 
  • changes in heart rhythms  * 24hrs a day 
  • *blue fingers/toes

So I have added a bit of what I go through or feel.  I hope that this helps some of you feel not so alone, or gain a better understanding of someone you are close to who might have this horrible health condition.  Remember that a migraine is not a singular thing – it is a condition.  The head pain is only one phase of four – the third phase.   I will get into the different phases on another post.

My Life With A Flare…

I know I have been quiet and I am not going to say I am sorry.  I have had things going on, and I am sure you have too.  I hope you have missed me as I have missed this.  I wanted to share a little bit into my life – I read something the other day that was like someone took the words right out of my mind and wrote them down…

You Don’t See the Worst Days of My Illness Because I Hide Them From You

So I got to thinking that maybe I should write a little something about my “flare days” or what they mean to me.  This morning I woke up with a mild one, so it’s a good day as any to start.  When you read these remember that I am only 35 years old and have had most of these since I was a teenager/young 20’s.  Here is a bit of my everyday life with a small glimpse of what the flares mean to me. (and before you look at this and think TLDR – remember its my life, I don’t get the TLDR option)

  • I have lived the last 11-12 years with a constant 24hr a day headache – please let that sink in.  It never stops, it never goes away.  Even when the Migraine pain goes away, the headache pain that I have never goes below a 3 or a 4.  When I have a flare day it can go up to around a 6 or so
  • at the Age of 21 I finally got my diagnoses of Chronic Migraines even though I had started having them when I was around 4 years old my mom said but none of the Dr’s believed her.  When I was a teenager they were almost constant in my life.  I had a Dr when I was 16 who was convinced I was faking it, it wasn’t until I had my second Seizure (yes I said second) at 20 that she sent me for tests and it took her another 6 months to agree with the other Dr’s diagnosis of Chronic migraines.
  • I have pain all the time in my mid/lower back, but on my bad days it like to lock up to where I cannot move for fear of causing myself nerve damage or exploding a disc in my back.  This started when I was about 13 years old, of course no one cared – no one has still looked at my back or my hips
  • I have pain in both of my hips on a daily basis, on a bad day I can hardly walk. (did I mention I am only 35 years old BTW)  Its worse on my right side with sciatic issues.
  • I have bilateral subluxation of the patella – or in non medical terms both of my knee caps slide around where they are not supposed to be – its worse on my right knee and I should have had surgery when I was 16 and collapsed on it or again when I was 23 and did it again – when I was 16 the Dr gave my parents some BS line and sent me to Physical therapy – when I was a young adult I had an awesome DR who diagnosed me, but I could not afford the surgery nor the time off from work.  (I still can’t)
  • Both my ankles click and hurt, I have broken almost all of my toes and my feet go numb with the slightest cool temp.  OH, they will also have pins and needles if I stand for too long – good times.
  • I have issues with my Lady Parts – I cannot have children – I have to have surgery to removed polyps, and ties my tubes, but there again, I cannot afford surgery.  My Doctor also diapered on me and treated more like a number than a person so I am on the hunt for yet another new OBGYN – oh the joy!  I also have ovarian cysts – on both sides.
  • Just like most people with Chronic migraines – I have IBS
  • I have issues with maintaining a healthy weight, I was under weight for most of my life till around 21 – now I have been considered over weight since.  I could stand to lose 50/60lbs and be comfortable with myself.  I know that doesn’t sound like a lot to some people, but I have yo-yo’ed with my weight for some time now.
  • My Shoulders are sensitive to repetitive work, like a few weekends ago when I took on painting our master bathroom by myself and had to call in sick the next day because I could not raise my right arm. I also broke my right arm when I was a kid so I have some nerve damage in my arm and hand.
  • I have numbness in my hands when they get cold just like my feet, it was intensified with the medication that I take for my migraines but I had it even before I started to take it.
  • I have had chronic nausea for over 3 years now – it comes and goes, but typically lasts for a few days when I have a flare up.
  • I have acid reflux
  • My migraines are about 1-2 a week – most I deal with without medication and push through if they last just a few hours – the bigger ones that knock me on my butt – I end up taking medication for – last week I had to take 3 doses of medication in 24hrs – that is so hard on my body, but I didn’t have a choice.  I was in tears and almost in a panic attack.
  • Between my work and my home – the temperature is never warm enough for me and I am in pain almost all the time.  I always have a sweater on at work, I even have gloves and a blanket on my work chair.  At home I always have a blanket on my chair.  At night when we go to bed I am cold at first but then shortly after we go to sleep I get hot and will kick everything off.  If I get too cold or stay cold for to long, all my joints hurt and my head will start to hurt.
  • If I get too hot, and it doesn’t take much time out in the heat and where I live our summers are HOT – I will get light-headed, can (and have) passed out and feel sick to my stomach.
  • I shake, I get dizzy/light-headed for no reason.  I feel like the ground under my feet is shaking or moving.  I tripe over air and down I go.  I stub my feet all the time or miss negotiate doorways and clip my shoulders.
  • I can get exhausted from taking a shower, brushing my hair/brushing my teeth.  I have Chronic Fatigue Syndrome, so it doesn’t matter how much sleep I get, I am always tired, always ready to take a nap.  I fall asleep very easily during the day.  If I have a CFS flare – forget it – I have little to no energy to do anything.  My hair will not be washed, I am wearing my PJ’s or something close to them for most of the day and might not make it out of my recliner that often.
    • What a CFS flare means to me: I am extremely exhausted, like fall asleep any time during the day if I sit still for a moment kind of tired.  Yet no length of a nap will make it better, in fact after I wake up from a nap I feel almost like a panic attack or like I was drugged.  Taking a shower makes me wiped out and I shake or physically hurt from the water hitting my skin. (I have to take a HOT shower because the cold water will make my joints lock up.)  I will just feel “off” like there is something wrong but I cannot place it, nothing sounds good to eat, nothing sounds fun to do, nothing I want to watch on TV.  I just don’t want to do anything.
  • I have insomnia – have since I was very little and if I have a flare up of any kind it is not unusual for me to awake till midnight even thought I am exhausted and have taken medication to sleep.
  • I have panic attacks – they were never that bad until I had my last dose of Botox injections a few years ago for my migraines and they got supper bad.  Everyone that got them around the same time I did had the same reaction and mine have not really gone away.
  • I am on a restricted diet – I have to have low potassium, low sugar, low sodium, low-fat and non dairy if I can help it foods.  I avoid cows milk and limit my other dairy intake.  I also have to avoid Pork and lower my intake of red meat.  My body cannot seem to process the potassium in foods or water that I drink.
  • I was tested for MS, Lupus and various other Auto Immune disorders – the Lumbar puncture I had done said no for MS but leaned toward Rheumatoid condition – the Rheumatoid Dr took blood work and never called me back – so starting over there.  I still feel I have something like Lupus or Firbro and so does my Neurologist – she was the first dr to believe me in all of this mess.

So what do I do, I try to put a smile on my face and hide it from everyone.  Why?  Because when someone asks me how I have been and I try to tell them, they either back away from me like I am bothering them, or their eyes gloss over like “God, will this girl ever shut up, she can’t possibly be this sick.”  I get that all the time, “Well you don’t look sick…” “You were fine yesterday.” “You were fine and hour ago/15 mins ago…”  You have no idea how much your words hurt.

But, this post isn’t to make anyone feel bad, this is to make you understand, or try to somehow.  When I say I am sick, or that I hurt – understand that the level of pain that I am in – you will never fully see, because I try to hide it.  My poor Husband is the ‘lucky’ one who gets to see me sink to my knees and sob – yes sob like a 5-year-old asking “WHY ME!  What did I do?”  And cry so hard that I make myself sick because it hurts so damn much.  So don’t you ever, for one damn second think I am faking this.  I would not wish this on my worst enemy.

I have a few close friends who say they can see it in my face when I am trying to hide it, or hear it in my voice.  And I guess just over time it’s getting harder and harder to hide.  So there it is, a little bit of a view into what its like to be me.  Maybe you will better understand me, or someone just like me…or it offers someone who is just like me hope that they are not alone.

I don’t want you to feel sorry for me, I don’t want you to think I am weak – I want you to see how strong I am.  For all the people out there who hide behind the smiling mask, I am here with you!!  You are not for one second alone!

Migraine Experience…

Excedrin has been working with Migraine sufferers like myself to put together a virtual reality to show their loved ones what a migraine “looks like” when one starts for them – it’s an interesting video – https://www.excedrin.com/migraine-experience/ – when I saw the commercial on TV the first time I broke down crying – I have always looked for a way to do that….

 

What is a migraine emergency?

By Tammy Rome—July 31, 2015

Two years ago I was doing some last-minute shopping the night before Thanksgiving day.  I started experiencing a prolonged aura that could have been the early signs of a stroke.  After an hour of progressively worsening symptoms, my husband took me to the local ER for evaluation. All the tests were clear, so I was sent home with instructions to return if the symptoms recurred. Fortunately they never did.  Even though it was a “false alarm”, that’s one ER trip I will never regret. Knowing the signs of a true migraine emergency is essential for every migraineur and caregiver.


People who say “Migraines don’t kill” have obviously never heard of these life-threatening complications, any one of which can be deadly if not diagnosed early and treated aggressively. We get so accustomed to tolerating the pain that it’s easy to forget how dangerous migraine can be sometimes. We take for granted that “…at least it’s not fatal” when we should be much more vigilant.

Migraines can kill.

There are four potentially life-threatening complications of migraine. Even though they are rare, learning to recognize the symptoms is essential for every migraineur. Knowing what to look for helps determine when it is appropriate to seek emergency help.
If you do end up in the ER with these symptoms, it is critical that you (or your caregiver) be able to clearly explain the symptoms that you are experiencing so that you get fast response to either rule out problems or get emergency treatment right away.

  1. Status migrainosus
  2. Migrainous infarction
  3. Persistent aura without infarction
  4. Migraine aura-triggered infarction

Status migrainosus

Any migraine attack that lasts longer than 72 hours should be evaluated by a doctor. Even if you are able to sleep through the attack or get temporary relief from taking medication, you still need to get it checked out.  Doctors will want to rule out stroke and administer treatments to break the cycle. Sometimes long-lasting migraine attacks are caused by other problems such as medication overuse headache. However, status migrainosus must be ruled out first.

Persistent aura without infarction

Anytime we have an aura that lasts for 1 week, we should get it checked out. Again, your doctor should rule out stroke before giving this diagnosis. On rare occasions, persistent aura without infarction can last for years.

Migrainous infarction

This is what doctors are trying to rule out in order to make a diagnosis of persistent aura without infarcition. It appears like a typical migraine with aura except that the aura lasts for longer than 60 minutes. When tested, an MRI or CT scan will show evidence of a stroke. This is distinct from the increased risk of stroke in younger patients (under 30) with migraine with aura.

Migraine aura-triggered seizure

The name is pretty self-explanatory. It is a seizure that is triggered by a migraine attack and typically occurs within the first hour during or after a migraine attack. Patients with epilepsy often experience migraine-like headaches just as the seizure is ending. When a seizure follows a migraine attack, is it commonly referred to as “migralepsy”, although the more accurate diagnosis is migraine aura-triggered seizure.

Of the four complications of migraine, only status migrainosus is seen in patients with migraine without aura. The other three are only seen in migraine with aura. Since none can be accurately diagnosed without at CT scan or MRI and time may be critical, the ER is best equipped to determine the level of your emergency, rule out life-threatening issues, and provide the right interventions should you experience one or more of these migraine complications.

Print off this article.
Memorize these symptoms.
One day your life may depend on it.

 

In addition to the situations listed above, please ensure that you discuss any symptoms that are new or different with your physician or a healthcare professional. While migraine symptoms can change over time, it is essential to rule out any other underlying causes for your symptoms.

30 Things About My Migraines…

30 Things About My Migraines…that you may or may not already know.

  1. My diagnosis is: Chronic migraine with and without aura.
  2. My migraine attack frequency is: Three to four times a week, and sometimes almost daily.
  3. I was diagnosed in: 2003 After having a seizure that got my Dr to finally believe I had something going on that wasn’t “just a headache”
  4. My combined conditions include: IBS and constant never-ending pain in head in neck since about 2007.  Hypertension
  5. I take: 5 medications:  3 each day for prevention (2-3 doses of each every day) and 2 medications to treat an acute attack.  I also take medication every night to help fall asleep, (lack of sleep is a big trigger for me) And Every 3 months I get 31 injections of botox into my head and neck.
  6. My first migraine attack was: My mom said I was around 4 when I started to complain about my head hurting.  But they really started to get bad when I was a teenager/young adult
  7. My most disabling migraine symptoms are: Pain and nausea both can be extremely debilitating, Unable to remember things or unable to find the words I need to describe what I need or how I feel.
  8. My strangest migraine symptoms are: Feeling of being cold, like the temp in the room is around 50-40F
  9. My biggest migraine triggers are: Chocolate (also causes hives), smoke, changes in sleeping patterns, skipping meals, fluctuating hormones, Weather, Stress…
  10. I know a migraine attack is coming on when: I get very cold, depressed, tired, dizzy, “shimmer” or aura (dancing lights, shadows, loss of vision in one spot)
  11. The most frustrating part about having a migraine attack is: Not being able to stop it.
  12. During a migraine attack, I worry most about: Stopping the pain, being a burden, throwing up, having a stroke.
  13. When I think about migraine between attacks, I think: I try not to think about migraine between attacks, but if the thought creeps in I hope my medication will abort the next attack
  14. When I tell someone I have migraine, the response is usually: Met with lots of questions, or I feel like they don’t believe me.
  15. When someone tells me they have migraine, I think: I understand and wonder if there is any way I can help them.
  16. When I see commercials about migraine treatments, I think: More research is needed, and they make it sound like “just take a pill and all will be better”
  17. My best coping tools are: Ever changing
  18. I find comfort in: PJ’s, dark room, my dogs and my husband.
  19. I get angry when people say: At least you can’t die from it.   it’s just a headache.  I HAD a migraine (to me migraine is not something you have and don’t have)
  20. I like it when people say: They want to know how they can help me, they want to know what my triggers are, they say they believe me.
  21. Something kind someone can do for me during a migraine attack is: Be kind to me, bring me water, be understanding that I can’t communicate in the best way
  22. The best thing(s) a doctor has ever said to me about migraine is: “I also suffer from migraines”
  23. The hardest thing to accept about having migraine is: My limitations and how different my life is with migraine
  24. Migraine has taught me: Life is not about fairness, but life is lived.
  25. The quotation, motto, mantra, or scripture that gets me through an attack is: “This too shall pass.”
  26. If I could go back to the early days of my diagnosis, I would tell myself: It’s going to be a long haul, but someone will believe you one day.
  27. The people who support me most are: my husband
  28. The thing I most wish people understood about migraine is: It’s so much more than a headache.  It affects my whole body.
  29. Migraine and Headache Awareness Month is important to me because: It’s vital for public to understand how debilitating migraine can be and how negatively it can impact someone’s life.
  30. One more thing I’d like to say about life with migraine is: Finding a good support network is an important part of a migraine treatment plan.

What a migraine attack is like…

I have been suffering since I was 4 years old with migraine attacks – most months I have 14-20 attacks.  I have also had a headache that has lasted about 9 years now.  It never stops, it never goes away – never goes below a 2 on the pain scale.  When that pain reaches about a 6 or 7 – that’s when the other migraine attack symptoms start to come into play.

Most do not know this, but there are 4 stages of a migraine attack:

  1. Prodrome
  2. Aura
  3. Headache
  4. Postdrome

Prodrome is the premonitory phase. About 80% of Migraineurs experience prodrome, although their friends and family may actually be the first to notice something about the patient doesn’t seem ‘quite right’. Prodrome is not focused on any particular area of the brain.  Some symptoms of prodrome may include:

  • Appetite changes (which may include cravings)

  • Cognition and concentration difficulties

  • Cold extremities

  • Diarrhea or other bowel changes

  • Excitement or irritability

  • Fatigue

  • Frequent urination

  • Memory changes

  • Weakness

  • Yawning, stretching

For me – I will get very – VERY cold all of a sudden.  Like someone dumped me in a tub of ice.  My hands and feet will get extremely cold and sometimes even my finger tips will get bluish in color.  My body temp has been recorded as on the lower end of the ‘normal” scale.  I get to a point where I can’t form words, cannot express what I want or how I feel.  Like there is a short from my brain to my mouth.   I will sometimes get false smells, tastes in my mouth, extreme fatigue, sore neck, fidgety like I can’t sit still.  Lastly I will sometimes get depressed, like my whole world is going to come crashing down on me.  I have been known to have a sobbing fit, like a small child who has misplaced her stuffed teddy bear.

Aura is a very dramatic, focalized result of the brain’s (electrical) wave of spreading cortical depression. Aura is most often visual or hallucinogenic in nature, although it may be sensory or motor as well. Some auras can be so profound as to mimic a stroke. Only a small percentage of Migraineurs experience aura.

Symptoms of migraine with typical aura

Visual aura are the most common kind of typical aura, experienced by more than 90% of patients. The first sign of visual aura is usually a small area of either brightness or blindness in the center of the field of vision, which typically spreads gradually outward from that central spot. This disturbance can take many different forms, such as moving zigzag lines, geometric shapes, blind spots, white or colored dots or stars, and flashes of brightness. The area of disturbance is often described as a crescent or C-shape with a shimmering outer edge, and vision tends to return to normal in the center as the disturbance spreads outward.

Reported by around 50% of patients, sensory aura are often described as a feeling of “pins and needles” or a burning sensation that starts in a particular spot (often the hand) and spreads slowly over that side of the body, face, and mouth. For many people, a feeling of numbness takes over the affected areas as the initial sensation subsides. Sensory aura often follow an experience of visual aura, but they can also occur as the only aura symptom in some cases.

Symptoms of speech and/or language aura can include trouble recalling words (most common), problems understanding language, and difficulties in reading and writing. About 30% of patients report having speech and/or language aura symptoms with migraines, making it the least frequently occurring kind of typical aura.

The ICHD-III states that typical aura symptoms usually last for more than five minutes but for less than an hour. However, a 2013 article reviewed the results of ten migraine studies that reported information about the duration of the participants’ typical aura symptoms. The authors reported that between 12%-37% of patients in those studies actually experienced typical aura that lasted for more than an hour. There are also rare cases in which typical aura have persisted for days or weeks.

For me Aura starts in with phase one – they are hand in hand.  I live in a state of prodrome and aura most of the time.  I for from attack to attack in a state of visual changes, loss of memory and concentration.  I will sometimes get one line for a song or a movie stuck in my head – it will play over and over – just that one line.  I will get phantom smells, tastes that are more intense than they were in the beginning of this attack.  Dancing lights in my vision that look like the slides of sells from back in my high school science class.  I will get dark spots, shadows that move around or even loss of vision in one of more spots.

Headache is the most common phase of a Migraine attack, although not all Migraines are painful.  Some physicians include headache resolution as a separate phase of Migraine.

Like I said before, I live in constant pain, so when the attack reaches the “pain” stage it goes from a lower tolerable level – to something that makes me want to hide under the covers.  I get to the point where I fear I might pass-out or get sick – sometimes both.  I have had to crawl from the bed room all the way to our bathroom across the house on my hands and knees.  Dragging my pillow with me so I have something to lay on when I get there.  My loving and supportive husband will offer to make my rescue medication for me sometimes, its a powder based medication that you mix with a small about of water and drink.  It tastes like a ground up Altoids, I know that doesn’t sound unpleasant – but when you are in a fill blown attack – its one of the last things I wanna drink.  I also have one that is a tab that you place on your tongue and it melts – but alas, it also has the same powerful mint flavor.

Postdrome is the last phase of the attack and occurs past the point of headache resolution. Commonly called a ‘Migraine hangover’ these symptoms may persist 1-2 days past the headache phase.

This is the “hangover” part of the attack – I go from this to the start of the next one it seems without any real-time of being “normal.”  I feel very tired, my skin, skull and even my hair hurt.  I feel as if I was running or fighting for my life – like I was in the boxing ring.  My eye muscles feel sore, my legs and arms don’t want to work quite right.  I have massive depression and guilt that start to kick in right about this time.  If we had to skip an event because of the attack it’s even worse for the guilt.

For many years I felt alone, I felt like my husband resented me – and I felt like no one believed me.  My bosses would not understand why I would call in sick, or come in to work and not be that productive.   I have had 3 rounds of Botox to try to prevent the attacks – I will do a separate post to go over how that is going.

A Migraine attack without prodrome, aura or postdrome is still called a Migraine. A Migraine without headache pain is called Acephalgic Migraine.

Most facts were found here – http://migraine.com

 

Some of what I am writing I have never told anyone – its been too hard on me – I usually cry and can’t get the words out.

Changing the way we talk about Migraine

From migraine.com

By Tammy L Rome—February 2, 2015

I’ve been thinking a lot about why stigma is so insidious and what we can do about it. A big part of the problem is in the way that everyone talks about Migraine. The way we talk about Migraine influences how we and others view the disease and we’ve been doing it incorrectly.

We talk about Migraine as if it is something that comes and goes, like a headache. We’re all guilty of saying things like…

“I’m getting a migraine.”
“The migraine is over now.”
“My migraines last for days.”
“Bright lights trigger my migraines.”
“How can I stop a migraine?”
“I’m getting too many migraines.”

These statements leave the impression that Migraine is periodic problem. People assume that when we are “migraine-free” we are as healthy as anyone else. Yet we all know this isn’t true. Migraine is a genetic neurobiological disorder with no cure. It never goes away.  Yet we talk about it like it has a beginning and an end. There may be a lucky few who are able to achieve remission by controlling trigger exposure or through preventive medication. Yet the fact remains that Migraine is always present. To refer to the episodes of pain, light and sound sensitivity, nausea, and cognitive problems as “a migraine” simply isn’t correct. There is no such thing as “a migraine”. Patients with Migraine disease experience episodes during which they experience the four phases of an acute attack.

Let’s look at this idea another way. We wouldn’t say someone with diabetes is “having a diabetes” when their blood glucose is too high.  And we’d never refer to a seizure as “an epilepsy”.  We’d say, “That person has epilepsy so they will have seizures sometimes.” Someone with cardiovascular disease can have a “heart attack” but we don’t call it “a cardiovascular”. By calling our periodic attacks “a migraine” we perpetuate the stigma that harms us all. Our disease will never be taken seriously if we can’t even describe it accurately.

This is an example of how I explain Migraine to people:

“I have Migraine disease. That means that periodically I experience episodes called ‘migraine attacks’ (or ‘attacks’ for short). During these attacks, I have trouble tolerating sensory input because all my senses are heightened to the point that touch, sound, light, and smells are painful. I have difficulty comprehending and communicating. My speech may be garbled or I might forget common words. My reflexes slow down, so it is not safe for me to drive or operate heavy machinery. Sometimes I get blind spots, blurred vision, flashing lights, or zig-zag lines in my vision that are called auras. I also experience excruciating headache pain on one side of my head.  Any movement makes it worse. Sometimes I get dizzy, feel nauseous, and even vomit. All of these symptoms are part of the “attack”. Attacks come and go. I have medicine that limits their frequency and other medicine that helps to shorten the attack. They can be as brief as 4 hours or go on for days. Because I have this genetic disease, I must be careful to avoid the things that set off attacks. These are called ‘triggers.’  Triggers can be almost anything from a change in weather, to bright or flashing lights, loud noises, strong smells, and often ingredients in food or drink. When I make a request of you, I’m not trying to be a ‘party pooper’. I really do need to avoid trigger exposure if I am going to feel well enough to join in the fun.”

When I started explaining Migraine in this way, I discovered that people took me a lot more seriously. They understood and accepted that this type of condition could easily disable someone to the point they could not work. The way we speak about Migraine does affect how we and other migraineurs are treated.

So let’s review…

  • Migraine is the genetic neurological disease that makes a patient prone to episodes or attacks.
  • Attacks include the four phases we experience: prodrome, aura, headache, and postdrome.
  • Triggers are the things in our environment that can set off an attack.

We need to adjust our vocabulary so that others will better understand and empathize with us.

Instead of saying… Try saying…
“I’m getting a migraine.” “A migraine attack is starting.”
“The migraine is going away.” “The attack is almost over.”
“______(trigger) gives me migraines.” “_______(trigger) will set off an attack.”

It is going to take a lot of time for all of us (including our doctors) to change the way we talk about Migraine and its episodic attacks. It will feel awkward for a time. But it is essential that we change our terminology so that the general public has a better understanding of what it means to have Migraine disease. By changing the way we talk about Migraine, people will learn:

  • Migraine is a disease that is lifelong and incurable. Remission is possible for a limited few, but many people never recover. There is a subset of patients who experience attacks every single day for years without relief.
  • It is characterized by periodic episodes of moderate-to-severe one-sided headache accompanied by hypersensitivity to light, sound, smell, and touch.
  • It can also include nausea, vomiting, dizziness, vertigo, garbled speech, an inability to communicate verbally, and one-side reversible paralysis.
  • Patients experiencing an attack have slower reflexes and difficulty with cognitive functioning. They should not drive or operate heavy machinery during an attack. Nor should they be expected to perform tasks that require concentration, focus, communication, or critical thinking.
  • Just before, during, and after an attack, patients may experience mood swings, cry easily, or become irritable. This is because brain chemistry is seriously altered at the start of every attack. It can take hours or days for the brain to normalize again.
  • Patients with Migraine disease are at greater risk of developing cardiovascular disease. If they have Migraine with aura, they are at increased risk of stroke. Women who continue to experience attacks after menopause have double the risk of developing Parkinsons.
  • Patients with Migraine often experience comorbid conditions (occur at the same time) such as Depression, Anxiety, Sleep Apnea, Fibromyalgia, and many more.
  • Intelligent, average people have Migraine disease. It is not a mental illness or moral failure. It is not caused by lifestyle choices. Patients with Migraine disease are born with it. They didn’t choose to have this disease and would get rid of it if they could. Many must take dozens of different medications in order to manage this disease. Rarely are the medicines they take addicting. However, they do have side effects such as weight gain, cognitive slowing, digestive problems, etc.

Help fight stigma by accurately speaking about Migraine disease and its characteristic attacks.