When you’re told your migraine isn’t “real”   By The Migraine Girl—November 27, 2015

Chances are, if you’ve told anyone about your migraine diagnosis, you’ve gotten some very well-meaning advice from about half those people. “My aunt had migraines forever until she steeped rare Asian mushrooms in a tea made of cow urine—you should try it!” “My uncle had migraines but it turned out he was just allergic to his down pillow.” “I have seen eight thousand ads for Botox, so now’s the time when I ask you if you have tried Botox.”

I, like many of you out there, have heard a lot of advice. I remember that people’s hearts are in the right place and that they have no idea that, in fact, I have tried a lot of things to get my migraines under control.

Another type of feedback we hear frequently doesn’t have the same positive, thoughtful origins as well-meaning advice. This feedback consists of people’s doubt, ignorance, and disbelief. This is the sort of feedback you get that makes you realize that the person giving it isn’t trusting that your experience is real, and you can then decide if you want to make it into a teachable moment or just drop it

One thing I’ve encountered over and over again is stories from you all about others dismissing your migraine claims. Sadly, a lot of the time this feedback is coming directly from other migraineurs, migraineurs who have yet to really realize that migraine can manifest itself really differently in person to person and from attack to attack.

Here are the types of comments many migraine.com community has had to endure:

Your migraine isn’t real if…

…you can look at a computer screen

…you are able to drive

…you aren’t in bed in the fetal position in a dark room

…you are able to sit up

…you are able to speak

…you are able to move without vomiting

…you are able to maintain a conversation

…you can take care of your kids

…you can’t sleep through the night

…you can sleep through the night

…you can maintain employment

…you don’t see a headache/migraine specialist

…you don’t take preventive meds

…you haven’t tried every single thing in the world to “cure” yourself

…you don’t immediately take the advice of whomever you’re speaking with

…etc., etc.

Thank goodness for communities, both online and “real-life,” that can connect migraineurs to one another and allow us to learn about the intricacies of this very, very complicated illness. Thank goodness we have advocates and doctors encouraging us to keep track of our migraine patterns so we know how a migraine shows up in our lives. Thank goodness we have supporters—even if they’re just screen names on the migraine.com page or migraine.com Facebook page—that tell us to find another doctor when we tell yet another story of having the reality of our illness be dismissed.

Because I am now a fairly well-known migraine health advocate and writer, I sometimes encounter the reverse side of the problem a lot of you all have. That is to say, instead of telling me that my attacks aren’t real, many people I know—particularly friends and family I have here where I live in Athens, Georgia—dismiss their own struggle with migraine because they simply assume it’s “not as bad as what you go through.” Subjectively speaking, maybe I can agree with that a little bit at times: it’s true that my friend who gets one (count it) migraine a year doesn’t have the same sorts of challenges I do, but it doesn’t mean that her crappy yearly migraine attack isn’t really a migraine. Usually, though, I have to speak up and validate the other person’s experience, saying, “Migraines are a little bit different for everyone, and if you have a headache or migraine that is interrupting your ability to live a full life, I really hope you’ll see a doctor.” My migraine episodes are different than a lot of my friends’ episodes are, but that doesn’t make them any more real.

What do you have to say? Have you ever had the experience of someone claiming that your migraine isn’t real, either online or in person? How did you handle the situation? Or, are you more like me, encountering people who belittle their own experiences because they seem to think there can only be one really sick migraineur present? Please share your comments and stories below, or just add to my list above!
Bookshop owner & migraineur Janet “The Migraine Girl” Geddis moved around a bit in her early 20s before deciding to make Athens, Georgia her home

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So…… tough day yesterday. After 3 hours of sleep, I had to decide which meds to take and when since my emotional support furbaby Samantha had a vet appointment at 10:00 am. I  was already stressed, as I always am when taking Sam out. She doesn’t like the car at all! And after many years of car rides = poking and prodding, she’s onto me. With her meowing pitifully in her carrier, we set off. Last visit, Dr. Hayden discovered 2 mast cell tumors that needed to be removed. Sam’s previously had 6 others (all benign, thank goodness) and I’m praying these are too. This is a rare situation in cats, and my vet consults with an oncologist at NC State and Duke for ideas on how to proceed. It seems that the only curative treatment is to remove them, leaving large margins. I hate to put my baby through this again, but I couldn’t live with myself if I didn’t do all I could. Samantha’s not only my best friend, my heart, my world, my soulmate, she’s also

my emotional support cat. She assists me with my chronic daily migraines, fibromyalgia, depression, anxiety, and panic attacks. She knows exactly what I need and when I need it. I don’t know what I’d do without her! As those that follow my blog are aware, I have been unable to work for close to 5 years due to my medical and emotional issues. I’ve been fighting for SSI disability benefits for 4 years. I finally won my appeal hearing on a bench decision from the Judge. That was in October. I’ve contacted my lawyer and SSA several times about hurrying the process. I don’t want to harass Social Security, but I am desperate. I asked for a compassionate allowance and was told they were working on it. In the meantime, I have no income, no savings, and no one to help me. I’ve started a gofundme.com/Samantha-wins for Sam’s surgery. If anyone can contribute, I’d be most appreciative. Donations can also go directly to Dr. Amanda Hayden, Centerville Animal Hospital, 300 Centerville Turnpike S, Chesapeake, VA 23322 (757) 482-9410. Every dollar is a blessing! Thank y’all for your love and support! It means the world to us! 2016 will be a better year! #AlwaysKeepFighting

My days are numbered. As are everyones. We are not immortal. We come with an expiration date. So it seems almost criminal to me to waste any of these precious days we’ve been blessed with having. Days are short. Twenty four hours go by in the blink of an eye. Weeks, months, even years fly by, leaving us saying, “where did the time go?!” Time marches on. Time waits for no man. No matter how hard we try to hold on to our youth, our kids youth, keep our parents from aaging, we cannot slow it down. So if we’re smart, we embrace it! Carpe diem! Live each day to it’s fullest! Do everything on your bucket list before it’s too late! Don’t procrastinate. Don’t say, “tomorrow’s another day.” Because it may not be! Nothing is promised, especially time. Things can change in the blink of an eye. As in my case. I went from living my life, to watching it pass me by. Chronic migraine and Fibromyalgia stopped me in my tracks. I used to go horseback riding, swimming, walking, trips to the beach. Now I’m lucky if I can get out of bed without falling. Or get out at all. These conditions have robbed me of my own free will. My choices. My own decisions. Planning and having something to look forward to doing. I have no guarantees that if I schedule something today for tomorrow, that I’ll be able to go. It’s an endless merry-go-round of missed appointments, broken plans,  disappointment, guilt, anger, depression. I fight! I push myself as hard as I can. But sometimes that’s not enough. My body wins out over my mind. I’m trapped in a mind that wants to go and a body that won’t allow it. I’m not done by any means. There are still medicines and treatments I haven’t tried. There are new meds and treatments in development. I won’t stop fighting because the alternative is too grim. So no matter what you’re facing, don’t give up on your dreams. Keep making plans. Keep writing your bucket list. This is the only life we get. Make the most of it. Every minute of every hour of every day. Stay strong and #AlwaysKeepFighting!

Up at 3am daily. Habitually. Brief, drug-induced naps during day. Non-restorative sleep at night. Painsomnia. So tired, my tired is tired. Can’t shut my brain down. So many thoughts, fears, ideas, worries, anticipatory anxiety, and panic. 24/7. No breaks. My brain hurts. Migraine pain worsens from 9 to 12 on the pain scale. My anxiety and depression are through the roof. Worrying about things I cannot change. Stressing about situations I have no control over. Panic attacks are much more frequent. The pain meds make my thoughts murky. I don’t often remember things that I think of overnight. I hope they weren’t million dollar ideas! Maybe I should sleep with a tape recorder nearby. My stress lessened somewhat when I won a fully favorable decision on my appeal hearing for disability benefits. But it’s now been almost 2 months with no money or medical insurance. I’ve called SSA and was told my case was “being worked on.” That doesn’t help me pay my bills or have my chronic migraine treatment started. So, my stress level is back to 110%. I understand that the government is inundated with cases, but it’s been over 4 years since I started this entire process. I asked about a compassionate allowance to get benefits asap. I’m still waiting for a call or a letter. Nothing yet. So my pain is constant, as is my depression, anxiety, and panic. In the midst of all of this, my emotional support furbaby Samantha has developed multiple mast cell tumors. Surgery is the only way to guarantee the masses are fully cured. I hate to put her through the trauma and anesthesia, so hopefully 1 operation will be it. Sam is not only my therapy cat, she is my soulmate, best friend, confidante, pain reliever, comic relief, basically my everything, along with my Mom. They are the two most important figures in my life. I can’t imagine life without either of them. If you are able to help, Samantha has a fundraiser at gofundme.com/Samantha-wins or her vet is Dr. Amanda Hayden, Centerville Animal Hospital, 300 Centerville Turnpike S, Chesapeake, VA 23322 (757) 482-9410. Any amount is a blessing!

Samantha also has an Amazon Wish List. It would alleviate a lot of stress and make my heart lighter to know that at least she is taken care of! Bless you for your caring and support. Stay strong and #AlwaysKeepFighting!

newlifeoutlook | Migraine
What Not to Say to Someone With Migraine
“Seriously, how can you have another migraine? Again?”

Well, they don’t seem to set a schedule for me to know when they will strike, so I don’t know why I have another one, but I assure you they will keep coming unless someone finds an actual lasting cure.

“You don’t look sick.”

That is because I push on through most of the time and continue with as much of my life as I can. If this struck you several days per month, wouldn’t you try and keep living your life too? It doesn’t mean I am not in agony — it means I am trying to keep going.

“You just need to get out more.”

With migraines you tend to retreat when you are under attack. But I do actually go out and do things, the same things people who don’t suffer from migraines do.

“You need to get more exercise.”

Exercise
is part of several things you can do to help control the number of attacks you may get, but it does not prevent or stop a migraine. I actually do exercise on my good days and, big surprise, it does not stop me from getting migraines.

“I think you thrive on sympathy.”

While I think everyone appreciates having someone sympathize when they are in excruciating pain, I am not “claiming” to have a migraine to get your sympathy. In fact, anyone who would suggest that as a reason probably lacks the required compassion required to provide sympathy to me. Sympathy can be nice, but what I seek is understanding and compassion.

“I wouldn’t take all those pain medications. Natural remedies are the only way to go.”

Well, I don’t love taking them either, but in the midst of a migraine I will honestly take whatever might possibly work. Natural remedies may help, but they do not alleviate the pain enough to rule out other medications that might. When you feel like your head is about to break open for three days straight, you are willing to take or do just about anything for relief.
I have found this miracle shake (or supplement) — you should try it!”

And you sell it, only you really just want to recruit me to your downline and make me auto purchase the stuff for hundreds of dollars per month. I have heard it from a number of people who say they are not “salespeople” and are only trying to share information and help people.

No, you are trying to build a downline and are preying upon desperate people to do so. Honestly, if there was a cure for major diseases the word would spread and doctors would get on board (yes, there are still some who care more about their patients and a cure than anything else). While supplements and such may help, just like natural remedies, I do not believe you have found a cure that is only available to me if I join your “team”.

I think people say some of these things to migraine sufferers because they simply do not think about what they imply or how their words can hurt or cause insult. The more awareness there is about the chronic condition, the more compassion and kindness can be offered in place of these disturbing remarks and suggestions.

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Barbara Leech
Dec 1, 2015

© 2015 newlifeoutlook™ All rights reserved.

 

What Not to Say to Someone With Migraine     12 Phrases We’re Tired of Hearing

Those of us who suffer with chronic migraine pain have probably all experienced the insensitive, and sometimes outrageous, comments made by those around us. These are typically people who do not understand what it is to live either in pain or in fear of the next attack. Strangely, it has occurred in my life with alarming frequency and from surprising sources, such as the misguided advice of an ER doctor and close relatives without a clue.

It is frustrating when you are already suffering and feeling like you are just getting by, and then someone says something so ridiculous or insulting there really is no polite response. I say very little in those instances, though a comeback is playing in my mind.
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Here are a few of the top insensitive comments about migraines we have all heard at some point. May it serve as a guide of what not to say to someone with migraine.

“You should just drink more water.”

Yes, I am aware
dehydration
can cause headache pain, but this is not my case. I drink plenty of water every day and I drink more when I feel a migraine is coming on, but that is not what triggers my migraines, nor will it solve my chronic health issue.

“Have you tried (insert medication name here)?”

Why yes, I don’t actually just sit there and take nothing to try and stop the crushing pain. I am aware there are things like Excedrin Migraine, Aspirin, Imitrex, Aleve and even Botox. I would have to live in isolation, without television or communication with any doctor to not have at least tried these obvious, well-known migraine medications.

“There is already a treatment for migraines, but the big pharmaceutical companies want you to stay sick.”

I’m not sure who you know that has been cured, while others remain out of the loop, but I am pretty sure the ones who produce a cure would rake in the money if that were at all true. There is no cure as of yet.
“Think positive! You are attracting negative energy and manifesting this condition. It is all in your head.”

It is an actual condition that occurs in my brain — which is located in my head — so you are partially correct, and that area sends out signals of pain to my nerve sensors. It is actually mostly caused by triggers (stress, light and certain scents) and my body’s hormones, and you would know about these concrete reasons if you were to actually research the science behind migraines. There is nothing in there in those medical studies about positive thoughts or energy saving me from an attack.

“We all get headaches.”

Yes, this is true, but not everyone gets migraines and they are not the same thing. Comparing a headache to a migraine is like comparing a soft summer rain to a hurricane. Unless you have felt this, you cannot and should not make a comparison.

Next page: “You don’t look sick,” “You need to get more exercise,” and more phrases we hate hearing.

© 2015 newlifeoutlook™ All rights reserved.

Early Signs and Symptoms of a Migraine Attack
By Editorial Team—July 1, 2014
As we know, people with migraine experience a vast number of symptoms during a migraine attack, and every person’s experience is unique. In addition to actual symptoms during an attack, migraineurs may also encounter specific signs that an attack is on the horizon. We asked our Facebook community if they have any unusual early migraine signs, and over 300 people responded!

Ten or more people said that they experience the following before a migraine attack:

Yawning
Watery eyes
Sensitivity to sound
Neck pain/stiffness
Sensitivity to smells
Mood swings
Food cravings/hunger
Vision changes
Numbness/tingling
Nausea
Auras
Sensitivity to lights
A cold nose
Eye pain
Fatigue
Some other commonly reported symptoms were difficulty concentrating, slurred speech hiccups, sweating, droopy eye, tasting metal, frequent urination, jaw and/or eye pain, runny nose/sinus pressure, thirst, and muscle tightening.

Here are some of the comments from the members of our Facebook community:

I yawn a lot:

Yawning is a big signal…another of mine is the inability to listen to whoever is talking. I drift off and find it irritating.
I get the yawning. And one eye will water constantly until I’m in full-fledged migraine status. I am sensitive to smell as well.
Yawning, watery eyes, vision changes, irritability, sometimes it just appears ugly unexpectedly.
Thanks for sharing all of this. I get the yawning too. It took me a long time to put it together with migraine. It’s very distracting. Sometimes I get the sweats. Does anyone, ummmm urinate a LOT? This is the oddest symptom I get, and I swear if I am in the ladies like all day, I get a migraine, a bad one, within 36 hours.
I yawn like crazy! I always have to apologize, my nose and cheeks get cold and eyes go a little funny. Lately I smell smoke. The back of my head and neck go rigid, I have been using Tiger Balm to help. Sometimes I have to wrap myself in multiple blankets. I have yawning too. Never heard of anyone else with the same issue. Yeah. I am not crazy.
Yawning, watery eyes and Super Smell!
Yawning is a big thing with me, also. Took a while to figure it out, but now when I yawn the people at work say uh oh, are you getting a migraine? They notice it before I do!
Nausea is a big signal for me

I get extremely nauseous. The back of my head and neck get sore. I get extremely cold and cannot get warm.
Nausea, yawning & hiccups.
Nausea & taste of metal in my mouth before migraine even hits.
I get that nausea feeling, back of head and neck get stiff and sore, and I get super human smelling and hearing…. everything intensifies before a migraine and during and as it eases away.
My vision is affected

Blurred vision and an aura.
Sharp pain behind my left eye, always left? Then noises, light and smells get more intense right before it hits. BUT once I have a migraine I can’ t sit still or my whole body throbs. I know my blood pressure is high at the time due to the pain. So until the pain eases, I pace and pace.
Sore eyes, nausea, irregular heartbeat, trembling hands and much more. To me … the real pain and sadness is that I cant read my books.
I get irritable, spacy, change in vision (every thing seems brighter or duller), visual disturbances (spots that i can not see through), lessened energy, confusion, weakness and disorientation.
Blurry vision…difficulty speaking & processing info.
Mine start with sore eyes, my neck starts to bother me. I can feel the pressure thing as well Angela. But mine usually start between my eyes and neck at the same time and eventually meet in the middle then I get the pressure feeling.
Never noticed yawning…. But I will get a warning of seeing auras and other visual things like little “shooting stars” across.
I get a sharp pain in my right eye then white spots then down for a few days. I get anywhere between 3 to 6 migraines a week.
I have a lot of neck pain/stiffness

Sore joints, especially back and neck, irritable (my poor family), clumsiness, forgetfulness, crippling headache, sensitive eyes.
My neck becomes very painful, which for me means a migraine the next day
For me, usually the night before, I get these really bad pains in the back of head on the left side. Then the next day I have a killer migraine that knocks me out of my daily life. I also see spots and lights.
Neck pain. Feels like I slept wrong and then it feels like I have a giant weight on top of my head compressing my neck. I used to get them at the very least once a month. Since I started MM I had my first one in almost 2 years!
Do you encounter any unique symptoms before you get a migraine? Share your experience with us in the comments!
The members of the Editorial Team are either employees of Health Union, the parent company of Migraine.com, or professional medical writers who are contracted to work for Health Union. Often times we collaborate on articles for the site that may cover a broad range of topics from news articles, reports from our In America surveys, or a summary of feedback that we’ve gathered from our community members. We are very diverse in our backgrounds and expertise, so sometimes we may write as individuals or as a team.

 

 

Migraine Guilt
By Kerrie Smyres October 16, 2015
I feel guilty that because of a migraine, I ___________________.

Missed my son’s school play
Couldn’t go to my daughter’s soccer game
Canceled plans with a friend
Skipped Sunday dinner with my family
Was unable to walk my dog after work
Had to have a coworker cover for me
Left my group hanging on a class project
However you fill in the blank, most people with migraine have said that they feel guilty about something they did (or, more often, didn’t do) because of a migraine attack. The reasons for guilt run the gamut. I have even felt guilty for throwing away vegetables that went bad because I was too sick to prepare them.

The first time I wrote about migraine guilt, a headache specialist who reads my blog asked why I felt guilty when I wasn’t to blame for any of my perceived failings. I didn’t get what she was saying. It didn’t matter to me that I wasn’t to blame—I let people down (even my local farmer) and felt guilty for having done so. Recently, though, the seed that she planted nearly a decade ago began to sprout.

Guilt is what we feel when we have or believe we have done something wrong. It’s often called a useless emotion, but it’s a great motivator for changing behavior. Social worker and researcher Brené Brown describes it like this: “We feel guilty when we hold up something we’ve done or failed to do against the kind of person we want to be. It’s an uncomfortable feeling, but one that’s helpful. When we apologize for something we’ve done, make amends to others, or change a behavior that we don’t feel good about, guilt is most often the motivator.”1

You can apologize for something you believe you’ve done wrong because of a migraine attack, but there’s no behavior you can change. Having a migraine attack is not a behavior, it’s a physical state over which you have no control. According to Brown and other researchers, the guilt that I’ve always associated with migraine is actually shame. Brown summarizes the difference between the two: “Guilt = I did something bad. Shame = I am bad.”

Ouch.

Because I’m a glutton for punishment, I read Brown’s book on shame called “I Thought it Was Just Me.”2 I swore an astonishing amount, not out of anger, but in disbelieving recognition. Shame was the fuel for so many things I spent the early years of my disability doing: chattering nonstop to keep people from asking questions about myself for fear they’d uncover my secret; frequently saying, “I’m the kind of person who…” in order to define myself as something other than sick; beating myself up for doing and saying the wrong things.
I was ashamed for being disabled by an illness most people understood to be no big deal. I was ashamed that I had to cancel on friends and family so often. I was ashamed that I couldn’t will myself to get better. I was ashamed that no matter what I did, the symptoms kept getting worse. I was ashamed of not being the person I thought I should be. I was ashamed that this illness was a neon sign advertising my weakness and failure to all who cared to look.

I was steeped in shame, but called it guilt. Guilt felt rational and reasonable. I’d rather believe I felt guilty for letting produce go to waste than to admit how deeply ashamed I was that I couldn’t keep up with the simplest things in life. The guise of guilt let me focus on systems and schedules so I could avoid the desolation of shame. I thought I was trying to fix everything for which I felt guilty. I was really deflecting my attention from the shame.

The dark place of disabling chronic migraine is where the shame began to take root, but my fierce determination to hide the shame (even from myself) is what allowed it to burgeon. At a time when I was physically and emotionally depleted by migraine, self-compassion should have been a priority. Instead, I spent every spare bit of energy tending my shame. It grew so high that it nearly overtook me.
Now in her late 30s, Kerrie has had chronic migraine since she was 11. She’s been writing about migraine and headache disorders on her blog, The Daily Headache, since 2005. Kerrie is also the cofounder of TheraSpecs, which makes eyewear for migraine and photophobia relief.

 

Is migraine a disease or a condition? By Prof. Joanna Kempner—November 12, 2011
The International Classification of Headache Disorders (ICHD) offers a diagnostic definition of what constitutes migraine, but there’s no consensus about what migraine actually is.

Some organizations (i.e., the American Headache Society and the International Headache Society) refer to migraine as a disorder. Elsewhere, (including on this website) migraine is referred to as a disease.
Dr. William Young at the Jefferson Headache Clinic posed this question to a panel of 15 experts, academics, advocates, and patients. (I was a member of this panel.) We were unable of coming to consensus, but the outcome of our discussion will be published in the journal Headache.

I thought it would be fun to summarize our debate. I’d really like to know what you think migraine is.

Most of the panelists were torn between “disease” and “condition” as the best descriptor of migraine, although “disease” was slightly favored. They drew on three principles when deciding between the two words:

Biomedical evidence:
Panelists (especially the physicians in the group) wondered whether there was enough biomedical evidence to describe migraine as a disease. Panelists were particularly concerned about whether “disease” was the right word when migraine had such great variability. They worried that “disease” might be the wrong description for a person who had just one or two migraine attacks per year. Panelists who voiced these concerns were more likely to prefer “condition.”

Cultural meaning:
Panelists wanted to choose a term that built the credibility of migraine and which would help attract much needed resources. Panelists who expressed this concern were more likely to prefer the word “disease.” Panelists wondered if calling migraine a “disease,” might help people talk to their employers about sick days or get approved for disability.

Context:
Panelists thought that context mattered. They might, for example, refer to migraine as a “disease” in a room full of doctors in order to get their attention. But the doctors in the group worried that they might scare some patients if they described migraine as a “disease” in the clinic.
In the end, the panelists couldn’t decide what to call migraine, but I think that our debate can help all of us use language in a more thoughtful manner.

So what do you think? Is migraine a disease or a condition? If you think of migraine as a disease, is it always a disease? Or only when it is chronic and disabling?

*The Oxford English Dictionary provides the following definitions of disease, condition and disorder:

Disease: A condition of the body, or of some part or organ of the body, in which its functions are disturbed or deranged; a morbid physical condition; ‘a departure from the state of health, especially when caused by structural change’ (Syd. Soc. Lex.). Also applied to a disordered condition in plants.

Condition: A state of health, esp. one which is poor or abnormal; a malady or sickness. in a certain, delicate, interesting, or particular condition

Disorder: A disturbance of the bodily (or mental) functions; an ailment, disease. (Usually a weaker term than DISEASE, and not implying structural change.)
When you discuss migraine, what do you call it (or describe it as)?
A disease
A condition
An illness
A disorder
I don’t have a preference