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Living with Migraine

Explaining Migraine to Others

  • By Amrita Bhowmick, MPH Keymaster

    Explaining migraine to coworkers, friends, and family can be challenging (and frustrating!). Join our live discussion on January 17th from 5-8PM EST for tips from leading patient advocates.

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  • By Ellen Schnakenberg

    Here is a link I wrote a while back answering a forum question re: when friends and family don’t understand your Migraine Disease http://bit.ly/yDycFb

    I have fought this myself on a very personal level. Some of my experiences have been initially devastating.

    what are your experiences like with friends and family? Do they understand you and your Migrianes?

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  • By sallycolby-scholle

    What’s most frustrating for me is after telling someone I have a migraine, they ask me later how my headache is. Those are the people who can usually be educated, but unless someone has had a migraine, it’s nearly impossible to explain.

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  • By Ellen Schnakenberg

    How do you explain your Migraine to them?

    I usually start out with something like “You know, Migraine is a genetic neurological disease and head pain is only one part of an attack…”

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  • By theresadz

    My immediate family members that suffer from migraines themselves completely understand and are very supportive now that my migraines have gone chronic. I am still attempting to educate my husband on all the intricacies of the neurological disease that is migraine. He usually asks how my headache, like you Sally, and I usually respond because I usually ALWAYS have a headache. I can usually muster through all the other aura, pro and postdrome symptoms unless it has completely beaten me.

    With my chronic diagnosis I am making it a point to make information available to anyone that has questions and to point people in the right direction when I hear/see them giving out wrong information.

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  • By Teri Robert

    Hi, everyone! Sorry I’m late. Lost track of time.

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  • By BarbRN

    At work, nobody has them but me. Everybody that has a bad headache calls it a migraine. I take every opportunity to explain that it’s an all over feeling, not just a headache.

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  • By Teri Robert

    Theresa,
    I have some sheets that I keep in my purse so I can do that too – give them to people who need info.

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  • By Ellen Schnakenberg

    THERESADZ – Do you make the information available, or do you approach loved ones to talk to them about it? What is their response?

    I have had varied responses from those that know me ranging from anger to completely ignoring what I just told them as if I had never said a word.

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  • By Teri Robert

    I try to be very careful to always say “Migraine attack,” not “Migraine headache” to try to make it clear that a Migraine isn’t “just a headache.”

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  • By sallycolby-scholle

    It’s a lot easier to explain when not in the midst of a migraine 😉

    At breakfast on Saturday morning, I knew I was getting a migraine. It was that pre-pain stage when you just know it’s coming. I blurted out ‘I can’t believe I’m getting a migraine’ and took fioricet. Pain started within about 15 minutes, so I took cafergot, which worked, but I had to take additional doses (as prescribed). We visited friends that evening, which I knew would be pleasant because they don’t use scents, candles, etc and it would be quiet. I told my friend that I was dealing with a migraine, and she said, ‘I’m sorry you have a headache’. I guess because I was able to sit up and not look too pukey that it didn’t seem as if I was suffering. Took more cafergot there, and again before bed. Spent most of Sunday recovering.

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  • By theresadz

    Ellen, that is almost word-for-word what I say to people when they need an explanation of migraines. I find that they usually get stuck with the headache part of migraine, as I did before I got my diagnosis. I had to come to this site on my own after my doctor told me I had migraines because what I had didn’t equal my memories of my father throwing up for two days straight and not being able to have ANY light on in the house. I had a headache, it wasn’t so bad that I was throwing up, how could it be a migraine?

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  • By Teri Robert

    Good for you for looking for info, Theresa.

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  • By theresadz

    I give people the links to this site and over at healthcentral if they want to do any reading on their own, but I use the memorized bullet points of the sheet that Terri talks about to give them the basic info. When it comes to the people closest to me I usually go to them to explain either a phase of the migraine that I just went through that obviously effected them and walk them through the websites info to show that I’m not pulling this info out of thin air. They usually take it in, but they don’t always remember what I told them.

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  • By BarbRN

    Sally I totally know how you feel. That happens all the time to me. You keep going because you can’t just stop life as often as these “things” come on.

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  • By theresadz

    Sally you totally hit the nail on the head!

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  • By Ellen Schnakenberg

    One of the things I love to do is memorize Migraine factoids. I then annoy those around me by coming up with one every here and again. Most of the time I find people had no idea what Migraine really is. So far nobody has ever rolled their eyes at me, but instead it tends to instigate a conversation or a few questions. Great opportunities to explain more about what Migraine IS and is NOT.

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  • By Ellen Schnakenberg

    I wish we could turn Teri’s 10 Things I Want to Share About Migraine into a doctor’s office poster or two paged magazine ad!

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  • By Teri Robert

    Could we print it on a baseball bat and hit people over the head with it?

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  • By theresadz

    I have and I reference it quite a bit! Like Ellen I usually have a bunch of migraine factoids to throw out there. I find that if I keep myself educated about my own condition that it not only helps me to find ways to be as healthy as possible I can start to spread some of the information out to other people. Considering so many people suffer from migraines there are an awful lot of people who know nothing about it!

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  • By Ellen Schnakenberg

    Has anyone here had to explain Migraine to their kids? Were you explaining THEIR Migraine attacks, or yours?? How did you do it?

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  • By Teri Robert

    I explained it to one of our granddaughters a couple of years ago because of HER Migraines…

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  • By Teri Robert

    She knew about neurons from science class, so I explained that Migraine is a disease, and when we come in contact with a trigger, like her overheated Bible school classroom that day, the overactive neurons in our brains “go bonkers” and start firing in waves across the brain, making us have a Migraine and all the “stuff” that goes with a Migraine.

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  • By mallays

    My kids understand now because they see me suffer when I have one. What I don’t understand is colleagues, friends etc, who think their regular every day headaches are comparable to my massive migraines. I mean, pardon my whine, but if they can take a couple of Tylenol and it is better, it is not a migraine.

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  • By wildnoodle79

    what do you do when your dr dismisses your concern over a migraine that lasted 4 months straight and only wants to mask symptoms?

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  • By Teri Robert

    If you can’t get him to pay attention, fire his sorry butt and get a new doctor. There may not be anything else to do.

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  • By Teri Robert

    I don’t mean about the Migraine. I mean about the doctor.

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  • By Ellen Schnakenberg

    My son’s first Migraine was when he was only months old. Daughter’s didn’t happen until she was in her teens, but by then I was chronic, and the diagnosis of Migraine scared her because she knew what I had been living with. Unfortunately I wasn’t as well-versed in Migraine as I should have been at the time, and although we talked about it, she was still afraid what her future held.

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  • By Teri Robert

    Ellen,
    It’s so much easier to explain Migraines today because of all the information we can get online. Before the Internet, we just didn’t have info.

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  • By Ellen Schnakenberg

    WILDNOODLE79 – Sometimes the best thing you can do for yourself is fire your doctor as Teri said. Conversations should always be tried first, but if that doesn’t work, you can’t afford to wait for him to get interested, it’s time to move on to someone who can help you.

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  • By theresadz

    Wildnoodle, had you ever gone to the ER because of the 4 month long migraine?

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  • By Teri Robert

    I sound tough, but I really hate confrontations. It’s hard for me to fire doctors, but I’ve done it.

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  • By Ellen Schnakenberg

    What do you say when confronted by an angry person who doesn’t understand you’re having an attack? What if that person is your employer? That can be super tricky. Let’s talk strategies!

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  • By sallycolby-scholle

    Teri’s point a while back about referring to it as an attack is probably what I need to do. Don’t know why I try to minimize it, and even sometimes pretend I don’t have a migraine. With some migraines, I’ve even said to my hub, “I guess I can’t pretend I don’t have a migraine any more.” Thank goodness hub is very understanding and helpful, although I don’t think he fully realizes what migraine involves.

    Does anyone else do this (not make an issue of migraine attack – there – I said it – attack!) Maybe it’s something women tend to do because we just keep going no matter what? Maybe a first-born type A trait?

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  • By wildnoodle79

    i wish i COULD fire the migraines! haha j/k… 🙂 i have been toying with the idea of getting a new dr…fortunately i may be moving soon so a new one will be needed regardless…no i never went to the er, i know i should have, but the er in this town isnt the greatest i went in once for hemmoraging after my c section and was left in the waiting area fr 3 hours, so if i went in and said i have a migraine it would have been like 3 days lol. i joke cause theres nothing left to do…im going to try to find a specialist i think

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  • By Teri Robert

    I think some try to minimize Migraines because of the stigma. I’m stubborn enough that I won’t do that. Figure it’s an advocacy issue too. If we keep hiding, the stigma isn’t going to go away. Or maybe I’m just older and cranky and don’t care as much what other people think. If I have a Migraine, I don’t try to hid it any more.

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  • By wildnoodle79

    my “favorite” is when people who have no idea what a migraine feels like say oh its just a headache! grrrrrr!

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  • By Teri Robert

    Well, if you feel like vomiting, aim for their shoes, Wildnoodle!

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  • By Deborah

    I never say I am having an attack. I just say I have a migraine, but mine are chronic. Sometimes I am ashamed to even admit I have one.

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  • By Teri Robert

    Deborah, you deserve better. Please don’t let other people make you feel ashamed.

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  • By wildnoodle79

    hehehe i will! sadly shes my sons dr too and just wonderful with him…not me lol. i feel she isnt taking me seriously. its like here these drugs will shut her up…i specifically told her i would rather not overmedicate. what can you do *shrugs*

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  • By Deborah

    I tell people that I want to be like Teri when I grow up, lol. I admire how you handle everything.

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  • By wildnoodle79

    deborah dont let people make you feel bad! the migraine will do that well enough… 🙂

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  • By Teri Robert

    Awwwwwwwwww, Deborah. Thank you. It’s never easy. Not easy for me either. It does get a bit easier as you get older though.

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  • By theresadz

    Sally you are so right, I know I sometimes forget to call it an attack as well, and usually only complain of the headpain. When I am out with others I try to appear as normal functioning as possible, but my husband and immediate family get the full brunt of the attack because I know that they understand that I’m not being mean, cranky, distant, etc because of them but because of my head. Deborah, I was like that for a while, but I’ve gotten better about admitting it because now they have turned chronic! I can’t deny them now.

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  • By Deborah

    I have to admit the migraines do make me feel bad. I just feel guilty not being able to do the things I use to. My husband is a gem, and a great support. I just want my life back.

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  • By hltbenoit

    For years I didn’t tell friends I had migraines. I was absent a lot when in elementary school because of them and was made fun of so I just kept the info to myself. I did the same thing when I started working and then to my husband’s family as well. Knowing full well they wouldn’t understand. AND on top of that I don’t think I could have put into words what a migraine was. Not until my brother-in-laws wife suffered from them and she didn’t have any qualms about letting everyone know she had them. I felt alone and in the dark and when I brought it up I felt as though they would think I was copying her because she got so much attention. I used to suffer through many a family gathering squirming in my seat and barely keeping my head up because I was in so much pain and felt as though I had to suck it up!! Let me tell you, Cold Duck (my mother-in-laws drink of choice) is one big trigger !!!!! (I’m 42 and I have had them since I was 7)

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  • By theresadz

    We all do Deborah, no time like the present to take back what you can! *hugs*

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  • By Deborah

    How can you call it an attack if it is constant?

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  • By Teri Robert

    Sometimes, I think my best weapons are anger and sarcasm. Getting angry at the Migraines keeps me going. Sometimes, sarcasm keeps me from crying.

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  • By Deborah

    Thank you, I will take and give all the hugs I can, lol

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  • By Deborah

    I can relate to that Teri, sarcasm does keep me from crying.

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  • By theresadz

    Deborah, I was actually just wondering the same thing! I think we’re all a fairly huggy group, I know I am. *hugs all around*

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  • By mindymanon-messinger

    It is hard for me. I never got one til I had my last shot for anthrax (Marine Corps Veteran) No one in my family suffers. one of my sisters tells me it is just a headache I don’t know why you can not deal with it.

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  • By mindymanon-messinger

    Until one day I was visiting my family had a severe migraine and passed out. now she does tell me to deal with it. Like I was faking it or something. made me mad.

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  • By Deborah

    None of my sisters suffer either and they have a hard time understanding. The question I get from one of them all the time is, have you taken your medicine? That one gets me as I have to go over and explain rebounds to her and why I can’t take something sometimes.

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  • By Teri Robert

    Sorry about that, Deborah. My husband understands Migraines pretty well, but even after 26 years of marriage, he’ll ask my why I’m not taking anything.

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  • By Deborah

    Wow, maybe it is they just don’t want to see us in pain. I guess that is another way for me to look at it.

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  • By Teri Robert

    Yeah, it may well be that. Of course, I guess I can’t expect him to keep track of how many days I’ve taken meds either.

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  • By Deborah

    No, I guess not and my sister is in another state. I just wish there was an easy way to explain when they are chronic. We are looking for answers ourselves, more less able to give answers to family and friends.

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  • By Ellen Schnakenberg

    It’s hard on a loved one to see us in pain 🙁
    It’s good to always try to put ourselves in the other person’s shoes too. Gives me more patience

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  • By hltbenoit

    My father suffered from migraines but didn’t take meds. he suffered for years. a few of my sisters have had them but I am known as the one out of the six of my siblings as the one with migraines. It took a number of years for my husband to completely understand what a migraine is. Unfortunately I think my 2 children have suffered the most. They are now 13 and 17 now and have a better understanding and know what needs to be done when i have one.

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  • By Teri Robert

    Deborah, I think you’ve hit a major point. We don’t know enough about the disease. We need more research so badly. It’s hard do explain what’s not well understood even by the scientists.

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  • By Ellen Schnakenberg

    I have seen other people in other health communities create mixed media projects, like videos or slide shows that they produce themselves to try to explain their experience to others. Have any of you ever considered doing something like that??

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  • By Deborah

    So true Ellen, I guess I need to do that more often. I do have a question, how can you tell if a child is suffering from migraines?

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  • By Teri Robert

    hltbenoit,

    It often seems that the children suffer most. I used to feel so bad about missing out on things with our sons or being in bed instead of fixing their meals and so on.

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  • By Deborah

    I haven’t seen anything like that Ellen, but I would like too. Maybe that is a thought

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  • By theresadz

    Ellen, I have thought about it but I am a terrible artist and have a very hard to visually recreating something I’ve experienced… maybe someone else with more artistic ability could do a mixed media presentation, I know I would want to see it!

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  • By Deborah

    I feel real guilty about not spending time with my daughter doing the fun things. I am homeschooling her this year, so I am having more time with her.

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  • By Ellen Schnakenberg

    It was difficult with my son because he was so little. For him it acted much like an ear infection, but there was never any infection. We would take him to the doctor and he could never find anything wrong. Sometimes he would scream until he became sick, then would go to sleep and wake up fine. He suffered terrible colic from day one too, making the doctors think it was abdominal Migraine.

    We put him on some medicine that should have worked, and it did.

    As he got older we could begin to tell when they were coming before the pain hit because of how he would act.

    When he was 4 he became chronic. They hit nearly every day. He could tell when they were hitting by that time. We didn’t have to tell him.

    For him it was sort of a way of life from the beginning. There really wasn’t a “telling” him about it. He learned along the way.

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  • By hltbenoit

    Ellen, I do find that writting about it helps. In the process I have explored what it means to me to have a migraine and was able to pin point what i truly need when i’m in the throws of a migraine and how a migraine physically effects me. i’m all for art therapy!!

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  • By Teri Robert

    Deborah,

    Our granddaughter had her first Migraine at 2-1/2. We figured it out because she was hiding her face against her mother to avoid light, cringing and covering her ears when there was any sound that was very loud, crying and holding her head. The next day, her pediatrician also said it was most likely a Migraine.

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  • By Ellen Schnakenberg

    I LOVE art therapy too! It is how I learned to cope with the loss that all this has caused. I don’t show my work to other people though. I even won some poetry competitions, but my family has not seen what I wrote. It’s hard for me to talk about it sometimes…

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  • By hltbenoit

    As an adult with migraines I cannot imagine a poor little one suffering from one. it truly breaks my heart.

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  • By Deborah

    I believe my daughter is getting them also, she is just 9. Last month she started her menstrual cycle, and she has been having “headaches”. I believe she is having migraine attacks. How do I go about her being treated for them? Or should I do over the counter meds?

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  • By Ellen Schnakenberg

    I’m not sure if it’s so important for others to see what we make, unless we use it to try to explain to them what Migraine is like. Then I think even elementary looking pieces of art could be very effective. I think that relatives and friends would be interested to see even crude drawings or poetry simply because we made them… that is sort of the doorway to explaining things sometimes I think…

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  • By Deborah

    I wish I was artistic, I have a hard enough time writing. I know keeping a journal would help, but I am bad with words.

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  • By Teri Robert

    Deborah, I believe it’s best to get her diagnosed. One way you can often tell the difference between a Migraine and a headache is to bend over. That will usually make a Migraine worse, but not a headache.

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  • By Ellen Schnakenberg

    Explaining things to a small child is hard. I think the fact that we have Migraine makes it both easier and harder.

    Easier because we understand it ourselves.

    Harder because we don’t want them to look at us when we are Migraining and be afraid.

    For our family, making sure we had really good times when we could manage them was key. It helped with the frustration when things were bad.

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  • By hltbenoit

    Deborah, that is so hard to say. Perhaps start with something mild and make sure is comfortable and see how she does cycle to cycle (i wish i had kept a headache/cycle diary … i would have saved me years of heartache). Then take her to your pediatrician if you think they will listen. That’s what i would try.

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  • By Ellen Schnakenberg

    Deborah, I would encourage you to keep a journal. The words don’t matter – really. It’s getting it out that matters. The words will come with time.

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  • By Teri Robert

    As far as visual arts are concerned, if I attempted anything other than computer generated art, people would think my cats could have done better. 😉

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  • By Ellen Schnakenberg

    As for children, I gave mine each a gratitude journal. Every night when I tucked them in we talked about the things they were thankful for that day. Little ones can draw pictures, bigger ones can make a list. Going back through those journals years later was really interesting for lots of reasons.

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  • By Deborah

    I will make an appointment for her. I just wasn’t sure if they treated little ones or not. My heart breaks for any child that suffers in anyway.

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  • By Ellen Schnakenberg

    I can’t wait until we get a “like” button. Teri, you’re cracking me up tonight!!

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  • By Teri Robert

    Deborah, whether they treat or not, I’d think it best to have her checked out – more to make sure it’s nothing else going on. Unexplained head pain should always be checked out for that reason.

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  • By Deborah

    What a wonderful idea Ellen, that sounds so special. I am going to have her do that, thank you. Teri, I am with you on the art, lol

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  • By Teri Robert

    Me? Aren’t you used to my warped sense of humor yet, Ellen?

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  • By hltbenoit

    Ellen, i have this one poem that i hold dear and i thought long and hard about posting it on facebook. To my astonishment people could actually connect to it. And on the other side, people (not everyone) could understand, if just a little.

    Deborah, just write words. they don’t have to be in sentence structure. they don’t even have to be spelled correctly. just start out how a migraine makes you feel. you have already stated some words here on this forum. make a list, make columns, make circles. even if it’s what you had to eat and it was the best thing you ever tasted. words have power and they can set you free. and no one should have to worry about drawing well. lightening bolts going through a cirlce with eyes dots and a sad face can be all someone needs. (-:

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  • By Teri Robert

    I can draw a smile face. That’s about it!

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  • By Ellen Schnakenberg

    Teri, I love your humor, lol. I’m still chuckling at “Bite me?”

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  • By Deborah

    Your right Teri, and I should know better. Yes, Teri does have a warped sense of humor, as a Dr. and I have shared in the past. I believe he resembles Harry Potter, Teri, lol

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  • By Teri Robert

    If you’ve written poetry about Migraine and haven’t had it published anywhere, keep track of it. I have an annual poetry contest. We’ll be starting to accept entries next month.

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  • By Ellen Schnakenberg

    That actually makes me think… do any of you use humor when you talk about Migraine to others?? Do you think it trivializes Migraine attacks, or can it be helpful at times?

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  • By Deborah

    Well I guess my daughter and I will each start our own journals tonight.

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  • By Teri Robert

    Used right, I think humor can always help.

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  • By Ellen Schnakenberg

    HLTBENOIT – I love your reply! “words can set you free” and “just start out how a migraine makes you feel”.

    Believe me, I am no poet folks, far from it. But I’m telling you, if I can do this, anybody can. Forget structure. Forget making it pretty. Just start talking.

    It’s like writing blog posts, forum posts or anything else. The first thing you have to do is start…

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  • By hltbenoit

    I just came up with a really good idea (if i can slap myself on the back) but what if we had facial cards that we could use to post on our front doors or bedrooms or cubicles or family functions. A smiley face. A sad face. A face with a squigly line. A face with closed pinch eyes. A face that looks like it’s about to vomit., etc. This way we wouldn’t have to tell our family/co workers how we felt we could just post them and let them figure it out!! (-:

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  • By Deborah

    I think that it could be a double edge sword. I know the humor can make me feel better, and can make a person more relaxed about talking about migraines. Sometimes the humor opens the door for me to communicate with someone. I do sometimes use it to down play how I am really feeling.

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  • By Ellen Schnakenberg

    I got in big trouble once for using humor on another group for another health condition. Really got slammed horribly. Broke my heart really, because I tend to use laughter a lot when I can. Each community and family is different. Sometimes I think it’s fine, but I have tended not to write much in that vein because I don’t want anyone else reading it to misunderstand my intentions. Know what I mean?

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  • By streeper

    my father used to tease “a head like that should ache” until he realized how much pain

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  • By Teri Robert

    I like the idea of facial cards. I’ve thought we need bandaids that say “Migraine Disease” on them so we could put one on our foreheads when we have a Migraine.

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  • By Ellen Schnakenberg

    I had an idea once. Never did it, but might be helpful to mention here.

    I wanted just a little vase and a bag of pretty marbles. On bad days I would put lots of marbles in the vase, so family could guess how I was feeling without asking just by looking at what was inside. I think talking is good, don’t get me wrong. I just sometimes weary of doing nothing but talking about Migraine!

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  • By Deborah

    I understand Ellen, sometimes our words can be taken so out of context. I try not to read to much into things, and take it very light hearted.

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  • By streeper

    Ellen, can you see my posts?? Don’t know what I’m doing!!!

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  • By Nancy Harris Bonk Moderator

    Hi everyone. Thought I’d stop in and say hello

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  • By hltbenoit

    OMG – Humor helps!!! Teri’s “bite me” got me too. !!!! Just last September while in the throws of a 3 day migraine and all out of meds, i was in the er and when the dr. wanted to look into my eyes with his happy little light, I asked if I could swear and he said if it helps and I actually wanted to say “no f’n way” but ending up just saying the f word instead. it made ME feel better. even if for a few seconds. My husband and kids also know when I’m feeling better when I can laugh about what i just went through.

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  • By Teri Robert

    Streeper, I’m not Ellen, but I see you.

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  • By Ellen Schnakenberg

    Teri, I thought of this the other day…

    A couple years ago I gave a blanket that looked like a band-aid to my friend’s little girl when she went in for surgery. I would SO love to make a band-aid shaped adult sized blanket with Migraine written across it for those of us who need something soft to cuddle with when times are bad. Does that sound goofy??

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  • By Deborah

    I really like the cards too. Ellen you are the artistic one, what can you come up with? LOL

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  • By Teri Robert

    My family doctor says he knows I’m ill when I’m totally serious.

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  • By Ellen Schnakenberg

    STREEPER – I’m a little slow here in Missouri, but I see you hon!! <3

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  • By Teri Robert

    Ellen that doesn’t sound goofy at all. I want one! 🙂

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  • By Deborah

    No, that sounds like a wonderful idea Ellen. I put my order in for one.
    Hi Nancy and Streeper

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  • By Teri Robert

    I swear when we go to Congress for Headache on the Hill, I’m waring my Tee shirt that says “Migraines are not the boss of me!” under my suit jacket.

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  • By theresadz

    If you can find me bandaid colored yarn I am pretty sure I could whip one up 🙂

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  • By Nancy Harris Bonk Moderator

    Are you all familiar with the Wong-Baker FACES pain scale? It uses faces that are happy or sad to indicate the amount of pain a child is in.

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  • By Deborah

    I have to get that attitude, because they limit everything I do. I should say, I am limited in what I can do.

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  • By Ellen Schnakenberg

    And I want the one we haven’t got the graphic for yet – Migraine isn’t for Sissies!

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  • By Ellen Schnakenberg

    I wrote an entire article on pain scales once. There are LOTS of them! I think every doctor’s office and ER uses a different one.

    reply
  • By streeper

    Right!! New to me & not sure what I’m doing & how to follow!!! I like the idea of the Bandaid!!!

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  • By Teri Robert

    Deborah, even if they limit us, as long as we’re fighting, I contend that they’re NOT the boss of us.

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  • By Deborah

    I want that shirt too, Migraines are not for sissies!

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  • By hltbenoit

    Yes, Nancy!! Exaclty like that!!

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  • By Teri Robert

    We’re working on the graphic to get that shirt in my Cafe Press shop where the profits go to Migraine research.

    reply
  • By theresadz

    I have the pain scale written out in the front of my migraine journal so that way they know what I mean by each of the numbers. I hate when they tell me to rate my pain at the dr’s cuz I want them to give me a list to work off of.

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  • By Deborah

    Then I can wear that one too. I am not going to give up fighting, just have to take a deep breath sometimes.

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  • By Ellen Schnakenberg

    Streeper, you just start talkin’ and although it’s a bit disjointed, we’ll keep talkin’ back. Sometimes it helps to reply to a person and use their name. Keeps things a bit more organized lol

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  • By streeper

    Thanks, ellen! I’ll take a t shirt!!!

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  • By Deborah

    The wind is real bad here and my power is flickering. I am going to say goodnight and hugs to all. Thank you for the forum this evening!

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  • By hltbenoit

    i want the “sissies” t-shirt and I’ll take a band-aid blanket too. (-:

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  • By Ellen Schnakenberg

    I wish we could make a list t-shirt – 10 things you should know (sorry, can’t find the link) or even my Migraine Dirty Dozen http://bit.ly/wYiCpA . Add a Kool graphic from our Blake here at Migraine.com and it would educate and be fun at the same time!

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  • By theresadz

    That will be my next migraine project, a bandaid blanket! 🙂 Thanks for the inspiration guys!

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  • By Ellen Schnakenberg

    Bye Deborah! Come back later and read the rest of the conversation 🙂

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  • By Ellen Schnakenberg

    So, are there other things we could come up with for awareness – to help others understand Migraine?

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  • By hltbenoit

    Can i just vent a little about a family member? I posted the article the Ellen wrote about the 12 things Migraineurs Don’t Need to Hear (sorry for the paraphrasing). And my husband’s neice replied that since she suffers from migraines she could say whatever she wanted and she feels that if everyone removed sugar from their diets 100% and changed thier diets then atleast they would be doing something and would probably get rid of her migraines. I was so taken aback by this I was in disbelief for hours! I could barely put a thought together because she obviously didn’t read the article or if she did she didn’t get it. Just as an FYI she is, not to be mean, but a hypocrite because she is grossly overweight and at her wedding this summer she had a Candy Open Bar !!!!!

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  • By Teri Robert

    Sigh. Sorry you’re having that kind of experience. Unfortunately, there’s often little you can do to get through to someone with that kind of attitude. For one thing, very few people have only one trigger. For another thing, we’re all very different. Obviously, having Migraine also doesn’t give anyone the right to say insulting things either.

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  • By Ellen Schnakenberg

    HLTBENOIT – Sometimes you just can’t make sense out of nonsense.

    I don’t know if this will help, but it’s usually true:

    Eventually she will figure out she doesn’t have a clue what she’s talking about.

    The trick is, you have to put up with her until that happens.

    There is a phrase we us in our family a lot: There is no excuse for being rude.

    I guess you could have just laughed at her like it was a joke? Not sure what I would have said. Probably would have been speechless just like you 🙂

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  • By hltbenoit

    Her statements were the ultimate in what I think we all suffer along with the migraine. All I could say was that I was happy she had found relief. I know her too well not to argue with her. So I have let it go for now. I know my experiences with migraines have been.

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  • By Nancy Harris Bonk Moderator

    Wouldn’t it be so nice to be able to eliminate just one thing from our diet and we could “cure” our Migraines? We all know that just isn’t true. As Teri said what works wonders for some people may not work at all for others. This is when some good coping skill come in. As hard as it is, try to blow off those comments and hold your head up high!!

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  • By hltbenoit

    I think a funny bumper sticker would be “I’m not drunk, I have a migraine” too much?? (-:

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  • By Teri Robert

    hltbenoit, try to comfort yourself knowing that karma will catch up with her.

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  • By hltbenoit

    nancy, if i could remove one thing from my diet to make them go away would be lima beans. not that i eat them any way, but wouldn’t that power be great??

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  • By hltbenoit

    Karma is our friend. It takes care of our foes.

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  • By hltbenoit

    I guess, i have to change my logon name too. It should have come up Heather. (-:

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  • By Ellen Schnakenberg

    HLTBENOIT – here’s the deal… you know you have a better grasp on what is going on than she does. I still make the prediction that someday she will “eat” her words. When that happens, I hope you will be the wonderful person I know you are and help her with thoughtful and educating advice. In the meantime, send her here. There’s lots to read about Migraine and the low-down dirty truths we live with every day. There is also hope. Can’t forget that.

    Am always glad to hear that someone has found relief, but it always upsets me a little when those people find the need to chastise those of us still struggling. 🙁 That doesn’t make them smarter. It makes them luckier.

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  • By Teri Robert

    Then there’s my trusty little answer to most anything – “Bite me!” just joking.

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  • By theresadz

    Hahaha! I love listening to you guys, so sweet, sensitive, informative and funny! Nice to know I’m part of a group that has you guys in it. I like Terri’s response best!

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  • By hltbenoit

    If only i could have written that!?!? I would have been over the moon!!! And who knows, telling someone off might be a cure for migraines. (-:

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  • By Nancy Harris Bonk Moderator

    I love the “bite me” answer! It usually can fit into any situation!!

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  • By Teri Robert

    Yeah, well, my response can get you in the most trouble.

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  • By Ellen Schnakenberg

    Looking for feedback:

    I have spent the last 6 months or so trying to get non-Migraineurs to think of Migraine as a spectrum disease.

    Most people are aware of the spectrum that is autism. I really think that Migraine is similar in many respects.

    One Migraineur might get 2 Migraine attacks in a lifetime. Another might get them nearly daily. They both have Migraine. Their symptoms may be completely different too.

    I like thinking of it as a spectrum. I think if we could get non-Migraineurs especially to consider that, it would be easier for them to realize that we are all not alike and this disease is extremely varied in how it affects us.

    What do you think??

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  • By Teri Robert

    Telling someone off can be a cure for feeling like crap emotionally – if you can stand any fallout that comes from it. There are times when it’s worth it.

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  • By hltbenoit

    Excellent idea! Also, can we change the commercials that over the counter companies put on tv? I think it gives the wrong impression of what a migraine is like.

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  • By Ellen Schnakenberg

    My mouth says one thing, but even MY patient brain sometimes says “bite me” too. LOL!

    Hey, I see another T-shirt in our future!

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  • By Nancy Harris Bonk Moderator

    Although an interesting idea,I think before we spring any new ideas on non-Migraineurs them, it would be nice if ‘they’ accepted Migraine was a disease, first. Baby steps, may help end Migraine stigma.

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  • By Teri Robert

    I agree with you, Ellen. Getting Migraineurs to understand that could help stop some the arguments and hard feeings that occur amongst ourselves. We get so upset when someone says they can take a couple of Excedrin and be rid of their Migraine. We tend to say, “No way,” but in actuality, some people really can do that. They don’t understand people on the other end of the spectrum any more than the people on the other end of the spectrum understand them.

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  • By Nancy Harris Bonk Moderator

    Scratch the word them after non-Migraineurs. A typo.

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  • By hltbenoit

    Has there ever been a documentary on migraines? A tv story? The “What does a migraine look like?” angle. It could show what a person who can take two excedrin looks like all the way up to what it looks like when a person can’t function.

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  • By Ellen Schnakenberg

    There is much discussion in the Rheumatoid Arthritis community right now re: the terms and *phraseology* currently in use re: their disease – which BTW has little to actually do with arthritis – it is a systemic disease.

    Anyway, we still use the word headache. I know it is descriptive – my head does ache. But that is a symptom, not the disease. I sure wish we could change that perception. That’s one reason why I think considering it a spectrum is helpful.

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  • By Ellen Schnakenberg

    HLTBENOIT – there is a Migraine video in the making I believe. They were at Headache on the Hill last year. Not sure how they’re attacking it though

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  • By hltbenoit

    i finally have my husband saying migraine and not headache. i think the distinction does matter. i always say “what i would do for a headache.”

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  • By Teri Robert

    Totally off-topic, but we should start a forum thread for the best “Migrainisms,” great things people have said and who said them.

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  • By Ellen Schnakenberg

    It sounds like Migraine Awareness Month may change this year, but a project I have been trying to get started includes the idea of creating a community awareness video – The Faces of Migraine.

    The idea is to have Migraineurs send in photos of themselves when they first started experiencing Migraine, or when they were first diagnosed. I am really crossing my fingers for the okay on some super awesome music.

    What would you think about this? Would you support it by helping me round up photos etc to make it happen?

    Any other ideas??

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  • By Teri Robert

    Like Dr. William Young, who said, “An educated patient is a better patient. I’d far rather have a treatment partner than a dishrag.”

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  • By Ellen Schnakenberg

    I am all about helping to eliminate the dishrag patient from existence!

    Gotta love them.. Gotta help them too 🙂 That’s why I’m here 🙂

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  • By hltbenoit

    Both great ideas Teri and Ellen. Teri, I just checked out the link for migraine project. I’ll go back after to look at fully. Looks interesting. We need something like that.

    Also I will totally volunteer for any pictures needed. Even if you want one in full blown wallowing. (-:

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  • By Teri Robert

    I’m really hoping The Migraine Project turns out well.

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  • By Nancy Harris Bonk Moderator

    No need to duplicate efforts. But the photo thing might be grand.

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  • By Ellen Schnakenberg

    HLTBENOIT – I’m gonna hold you all to it then…

    I’m thinking interspersing photos with factoids would serve a dual purpose…

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  • By Teri Robert

    Well, the petition to Congress finally hit 5,000 signatures today.

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  • By Teri Robert

    Thanks, Nancy. Now we need 15,000 more.

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  • By Ellen Schnakenberg

    I think it’s really important for us to keep the petition going, even if that means asking people we know without Migraine to sign it in support of those of us who do.

    Just one more reason that talking EFFECTIVELY to others is really important.

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  • By hltbenoit

    I think I’m going to sign off now and sign the petition and go check out the website too. And guess, what, the ugly beast is beginning to rear his ugliness in my right eye. Good night all. Off to take meds. 🙁 I have enjoyed this immensely !!!!!!! <3

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  • By Ellen Schnakenberg

    HLTBENOIT – We’ll be doing these regularly, so I hope you’ll keep your good eye out for the next one and join us again 🙂

    ((Hugs))

    Feel better soon…

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  • By wildnoodle79

    i will be praying for relief for all of you and those with children who get migraines too! i hope my son never gets them…bad enough my husband is always on me about how hes sick of seeing me in constant pain and blah blah blah…might start my own journal tonight myself! ttyl everyone 🙂

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  • By Ellen Schnakenberg

    WILDNOODLE79 – G’night! Let us know how that journal goes…

    ((Hugs))

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  • By simplygourdjus

    this is the 1st time i’ve joined this forum. Migraine.com has be very helpful reading for me.

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  • By simplygourdjus

    i’ve been fighting a migraine all day. only a level 7, so i can function a bit.

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  • By Ellen Schnakenberg

    simplygourdjus – Yay! We’re so glad you’re here with us tonight!

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  • By Nancy Harris Bonk Moderator

    I’m sorry to hear that. Have you taken something for it yet?

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  • By Ellen Schnakenberg

    Not yay for the Migraine though. I’m so sorry you’re hurting. Wish we could take it away for you…

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  • By simplygourdjus

    Thank you all for the information u post here. I enjoy it.

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  • By Ellen Schnakenberg

    Have you been challenged by talking to others re: your Migraines?

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  • By Ellen Schnakenberg

    I always cringe when I see an explanation needing to happen. Or even simply a mention…

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  • By Sheena

    hello everyone

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  • By Ellen Schnakenberg

    Nancy, do you think it’s easier explaining Migraine when it’s got a relationship with TBI – or is it harder??

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  • By Sheena

    I really struggled with telling people when I was first diagnosed, partly because I didn’t know a whole lot other than what I remember from seeing my dad suffer (vomiting, sensitivity to light and smells, etc.). I was in undergrad and most of my professors thought I just had a headache and was using it as an excuse to get out of class.

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  • By simplygourdjus

    I dont have “migraine” meds any longer. The only things I take are advil or tylenol. I’m also on meds for depression and anxiety. I’ve taken a few advil and tried resting all day. Resting in a dark bedroom does help.

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  • By Nancy Harris Bonk Moderator

    You know, I am hesitant to discuss Migraine more than TBI with people. For some reason, people seem more willing to accept TBI than Migraine. Migraine can complicate TBI. Pardon me and my soapbox, but until we change the stigma that surrounds Migraine no one is going to want to hear about it.

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  • By Sheena

    Doing ok tonight. Been migraine-free for almost 48 hrs!

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  • By Teri Robert

    Yeah, I’m afraid so too. But, it’s a catch-22. As long as we shy away from talking about Migraine, it’s going to stay hidden away like a dirty secret.

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  • By Ellen Schnakenberg

    Nancy, that’s actually one reason I thought *maybe* with the addition of TBI into the mix that it might be easier.

    Is there stigma with TBI too?

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  • By Sheena

    I feel lucky that I work in a school, and the school nurse helps me to do migraine education among the staff so they can get a better understanding of this disease. My boss installed fluorescent light filters in my classroom to help.

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  • By Ellen Schnakenberg

    Sheena – that’s fabulous!! I think I’m a little bit jealous 🙂

    It’s always good to hear that someone is doing well. Makes me smile! 😀

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  • By Ellen Schnakenberg

    Sheena, I have been very curious about the filters. Do you think they are really helpful? Or just a little helpful?

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  • By Nancy Harris Bonk Moderator

    But as I say, the stigma starts at the top down. I know I am preaching to the choir here, but if doctors don’t believe, no one else will either. I am a firm believer in this. Change needs to come from the top down, trickle down so to speak.

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  • By simplygourdjus

    well, i’d better go now. I just wanted to thank you all for the helpful information u post, it’s been a blessing to know I’m not just “having a headache” or that “its all in my head.” haha Thanks again, take care

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  • By Ellen Schnakenberg

    SIMPLYGOURDJUS – I hope you’re able to get some sleep. Feel better soon…

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  • By Teri Robert

    SIMPLYGOURDJUS, get some rest and feel better!

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  • By Nancy Harris Bonk Moderator

    Good for you Sheena! No Migraine for 48 hours and Migraine education. You hit the jackpot! If I leave suddenly, the wind is really howling here and our powere may go out

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  • By Sheena

    I would say a little helpful, but probably because weather is my biggest trigger. Before the filters were installed, I used to keep half the lights off in my classroom…now my students prefer half the lights off and get upset when other staff turn all the lights on. They find the light filters and having some of the lights off more calming (which is good since my students all have emotional and behavioral disorders…the filters helps us both).

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  • By Teri Robert

    Well, I hate to leave the good company, but my husband is reminding me that I promised to have dinner with him at 8. Hope everyone has a good night and rests well.

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  • By Sheena

    Enjoy your dinner, Teri!

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  • By Teri Robert

    Thanks, Sheena. Hope to see you here again.

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  • By Sheena

    Has anyone tried to explain migraines to kids? I always struggle with how much/what to tell my students. It obviously can affect me at work…curious to hear others’ thoughts.

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  • By Sheena

    Thanks, Ellen!

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  • By Nancy Harris Bonk Moderator

    Both my children, teens really, have Migraine, so they are pretty clear on what it is and isn’t.

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  • By Ellen Schnakenberg

    I’m going to have to sign of for the evening as well. Dinner is calling 🙂

    Feel free to continue the conversation – We’ve highlighted it tonight, but it doesn’t end here. I’ll be checking back and hope you all will as well!

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  • By Nancy Harris Bonk Moderator

    Me too. I am pooped! Night every one. See you next time I hope

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  • By Anonymous

    No one in my family and even some of the people I work with understand my migraines. I get so sick and am in so much pain when I’m having one. I had one at work today and had to go home because I keep throwing up and having to take a break from looking at the computer screen. Certain family members think I’m just acting out while other think I’m over-exaggerating. I have actually been made fun of by them as well. To make matters worse, people at work are completely oblivious to what is going on with me. One of the craziest things that I have heard from someone is that they have heard from somebody that I was seen out with friends the day before laughing, and they said that it couldn’t be that bad because that was just yesterday. People have also said things about me acting out because I don’t want to work. I just think that assuming I was faking when the person didn’t even really know me was a very rude thing to assume. I have also had a someone make rude comments because I wear sunglasses most of the time indoors when I have the migraines. People can say hateful things sometimes, and I can’t help but feel upset by them. Sometimes, the pain gets so bad, I actually cry, and people will just up and call me a “big baby” and tell me that I need to grow up. I can’t stop throwing up, and some of my family members don’t even believe I’m in pain or throwing up when it is going on. I’m very worried about the amount of fluid and nutrients I have lost over the period of the migraines I experienced this month. This just hurts me so bad on top of all the physical pain I’m in. I’m trying so hard to not let these people get to me. One family member got very mad at me because I had to come home from work today and told me if I don’t “get it together”, I’m going to lose my job. There are a few people at work and in my life who are supportive and are actually concerned about what’s going on, but it’s so hard that family members and so many others are not supportive. I also hate hearing the saying “I don’t want to hear it!” I’ve been so stressed about this, and that doesn’t help my migraine. Does anyone have any advice on how to handle this?

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  • By Anonymous

    Hello,

    How do you explain Migraine to your spouse? Better yet, How do you explain the pressure your spouse might be adding to your anxiety and stress over your own migraines?

    I love my husband and he is so wonderful. He tries so hard to be supportive, I know he does. But everytime I have to tell him I am calling into work (using FMLA) I feel like he turns cold and hard. He of course says that if I need to stay home that’s what he wants me to do, but whether he realizes it or not, his body language says something entirely different. Of course, then I wonder if it’s my own feelings of guilt surrounding my condition that read more into his boby language.

    Then there are the situations like yesterday. I had exhausted my FMLA for the month, but was feeling terrible. There was just no way I could make it to work. I had to make the decision to call out. My husband because very worried and upset that I might get into trouble with work (get written up). We are also leaving for vacation at the end of the week and he was worried/upset that we might have to cut our vacation short.

    My problem is how do I explain to my husband how much he adds to my stress and guilt when he does that? Should I really expect him to just hide his emotions? I do not want a relationship where he cannot be truthful with me about how he feels, but it makes it so hard for me. There are times I go into work, and stay at work, while feeling terrible, just because I don’t want to deal with what he might say or how he might feel.

    He is hoping that someday he will beable to earn enough that I don’t have to work, but unfortunately, we are not there yet. I would like to have a job, but I’m just not sure how I’m ever going to have a worthwhile career if I cannot manage a better control on my migraines. I am still positive that something might work. While I’ve had headaches/migraines for years, I’ve only just started to seek professional help to get them treated.

    What experiences do others have working with their spouses?

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  • By Nancy Harris Bonk Moderator

    Hi Sara,

    Have you had a chance to read over the posts in this thread? This was started as a chat a year and a half ago and has lots of good suggestions in it. After you read though it, let me know what you think. If you still don’t have the answers you are looking for and/or have more questions I can point you in the right direction. How does that sound?

    Nancy

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  • By Carl

    Great posts, loving the tips and feedback. As a male from Australia who has had migraines for over 15 years I might add another perspective on things…

    Here is one I have about how to respond to this frequent question:

    Q: “Aren’t migraines just a bad headache?”

    A: “Calling a migraine just a bad headache can be likened to calling a tsunami just a big wave. A big wave in the surf may wipeout a few surfers, but a tsunami wave can travel right up the beach, down the street and inland for some distance destroying everything and everyone in its path… Many people vomit from the pain of migraines and are forced to retreat to their room for hours and sometimes days at a time. So it’s a little different than just a bad headache.”

    Thoughts?

    Carl, MigrainePal

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  • By Vinyet

    Hi everyone!

    I’m new on this forum, I’m a 21 year old girl and I’ve been having migraines with tension headache for the past 3 years approx. But it’s been getting worse lately. I’ve been having migraines pretty much EVERY DAY non-stop since mid-July. It’s awful. I’ve lost my entire summer.

    My symptoms have also changed: I have more nausea, I feel weak and I have shivers like I have a fever all the time even if I have no pain. But the latest addition that has been worrying me is that I have trouble speaking. Like sometimes I speak like I’m drunk: I laugh at everything, I say things that make no sense, I can’t find the words when I want to explain something, I change the order of the words… A few minutes back I had to email my teacher and I had to concentrate very hard and re-read the email a couple times to make sure that the email was well-written and made sense (like I’m doing with this post as I’m writing it).

    The worse is that I can’t explain this to my friends and family. And I’m afraid that others will think I’m stupid. My dad doesn’t even know what migraines are, he thinks it’s just a headache. Same with my friends. And I don’t know if I should talk to them and make them understand cause they’ll feel like I’m playing victim and I’m overreacting. I feel SO alone in this. And sometimes I have to hide my pain when my friends talk too loud cause I don’t want to have to tell them to keep it quiet. Like it’s their life, I don’t have to tell them off for speaking loud if they want too. I don’t know, I just feel so misunderstood and lost lately. Thankfully, reading these posts has made me feel better. I hope it all gets better for you all!

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  • By Ellen Schnakenberg

    Migrainepal – I was so disturbed at having to repeat these explanations so many times, that my son and I actually spent a year with the help of Migraine community members creating a video to explain what Migraine is, and why you should pay attention to it. Here is a post with the link that talks about it: https://migraine.com/blog/chronic-migraine-misfits/

    ~Ellen

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