12 Things you should never, ever say to a Chronic Migraineur

Migraine.com Infographic

Although lowering stress levels is good for anyone, this will not eliminate our attacks which are both genetic and neurologic in nature. Saying this will cause additional stress to us though, because we have enough to deal with in our lives without feeling guilty and judged by those we care the most about. Have you heard any of these negative reactions to your migraines? View the original post by Ellen.
 

 


 

Poll

Comments

View Comments (108)
  • OneL
    1 year ago

    The comment I get all the time that drives me crazy is “Why can’t they figure out/fix what’s wrong with you?”. Agghhh.

  • FrancesS
    2 years ago

    I grew up with my parents telling me that I felt pain more than other people. That way they could ignore me when I spent hours in my room with the light off and a pillow over my head to keep noise out.

  • DonnaFA moderator
    2 years ago

    Hi FrancesS, I’m so sorry that you experienced a lack of understanding from your parents as a child. Please know that there is always understanding and support here. We’re glad that you’re part of the community. Warmly, Donna (Migraine.com team)

  • jjrae
    2 years ago

    I just recently found this site after a severe run of migraines, on day 4 of missing work, 2 ER visits, and a bad reaction to a new medication my usually understanding boss said to me “I need you to return to work, this is unacceptable, your to young to be this sick” I had no words

  • laylalynne
    2 years ago

    I have had this reaction too. I’ve heard it from doctors, friends, family, and even my own husband. I’m 32 and I really shouldn’t be this sick all the time but hearing that statement from all these people makes it even harder for me to cope with this illness.
    I’m so sorry you had to hear that.

  • DonnaFA moderator
    2 years ago

    Hi jjrae, we’re glad you found us. Please know you’re not alone. We’re here to share information and support and a friendly ear.

    Please know that you do have recourse under the law. You may be interested in reading Expert Answer: Migraines and Unexcused Absences From Work. Please also check out the other article Diana references contained within. Hopefully, this can help lessen some of your worry.

    Thanks for being part of the community and for sharing your thoughts here. -Warmly, Donna (Migraine.com team)

  • Joanna Bodner moderator
    2 years ago

    Wow, jjrae….that is so disheartening to hear that your boss said that! I am so sorry that you have to contend with that. In case you need any tips on managing work and migraines, I thought I’d share some that we have related to this topic:

    https://migraine.com/blog/community-ideas-managing-at-work/
    https://migraine.com/blog/migraine-disclosure-work/
    https://migraine.com/blog/migraines-and-unexcused-absences-from-work/

    Thanks for being here and please always feel free to reach out for support.
    Take care,
    Joanna (Migraine.com Team)

  • mrst53
    2 years ago

    My husband tries to understand because he has some a few really bad migraines. My friends on the other hand think they are just headaches and are not as bad as I make them out. I should not need to lay down or go to sleep with them. One takes narcotics for her knee, but my migraines are not that bad. She has never had a headache in her life, so she can’t understand. I just have to suffer in silence or say my back hurts. That she understands.

  • ShannonAW
    3 years ago

    I have seen several “Migraine/Headache Specialists” in the last 7years and the cumulative take-away from the sum of these I interactions is that there are a large number of practitioners who should NOT have “Migraine/Headache Specialist” listed as one of their practice features, ever. I know, this sounds negative. It is negative because that is ALL I have experienced in my cumulative visits to these providers, including a few Neurologists! This is a rediculous situation and Migraineurs are being victimized by these incompetent, uninformed, judgemental, power mongers. No wonder insurance companies don’t want to cover anything for us. I have also seen a few “Pain Management Specialists” and while they were kind, caring, concerned and supportive, every one of them actually told me they didn’t have much training, information or experience with Migraine Disease so they felt like they would not be appropriate providers for me. When I got a commercial insurance policy via employment in 2013 and was searching for a PCP, I heard the same thing from many prospective providers. It was like they were afraid of this disease and didn’t want to even try to be my PCP because of it.
    I have been through so many negative encounters in just the last 7 years (not to mention my life prior, since I have had them since infancy) that I have just about given up now. I feel hopeless, helpless and utterly destroyed by this disease and now I’m reduced to a heap of disabled pain-ridden flesh with zero quality of life, just trying to survive long enough to get my youngest child to her 18th birthday & into college in about 2.5 years, then it won’t matter of I live or die. The kids will be on their way, living their own lives as legal adults. I’ve been working very hard to pass on everything I know to them so they’ll be well equipped and able to run their lives & homes. I have been teaching them everything I was not taught by my parents but learned on my own and I’m trying to put it all together in a book that I will give them when they leave home for college and I’ll know then that I did everything I could for them and then it won’t matter if I die. Not to say that they don’t care & would want me to die or that I don’t want to stick around to be there for them & see them raise their own families. I’m just living for them now; not for me. There is nothing for me except to be a huge, disappointing burden on my family.
    I’m beyond tired, worn, broken & weary now. I do not have any hope for myself any more. I don’t have any fight left in me anymore. I used to be on top of everything, house was always clean, Holidays, birthdays & special events were prepared to speck. We went to church twice on Sunday & once on Wednesday and provided transportation for anyone who needed it and taught Sunday school.
    I worked a full time job and was very closely involved with my family. We swam often and played tennis almost daily. I’m just trying to make it from day to day; I don’t care how my hair or clothes look. I don’t have any dreams, goals, aspirations or even a bucket list for myself because I no longer believe it is even remotely possible for any of those things to happen for me. That’s OK though, I really wish for the kids to have a life of wonderment instead. I don’t care if our home is decorated for the Holidays. I’ve taken a more ‘layed back’ position on how clean it is, which the teenagers like very much. I do still strive to encourage them to assist me in maintaining an appropriately clean home.
    I have severe osteo-arthritis in my knees that got worse during our try with Botox injections for the Migraines, which did not help the Migraines at all, by the way. I must use a walker to get around the house and I use a wheel chair outside of the house. I can’t stand up straight because my knees, I can’t walk more than a few steps without help. It feels like all of my muscles from my waist to toes seize up and stop functioning and I will, and have, fall down because they don’t work.
    My current PCP is willing to try to help me with medications for pain, depression, anxiety, blood pressure, sleep disturbances, etc. I am now unemployed due to my illnesses & try to survive on SSDI monthly payment and had to enroll in Medicaid.
    I wonder if my life would be different today if I’d ever been fortunate enough to find a fully equipped, experienced provider when my Migraine Disease went from intermittent to chronic daily and the quality of my life ended.

  • laylalynne
    2 years ago

    All of this sounds extremely familiar to me. I’m incredibly sorry you have to feel so tired and weak from just trying to live. I wouldn’t wish this feeling on anyone. Please know that you’re not alone.

  • TLSemler
    2 years ago

    ShannonAW- Research the Diamond Headache Clinic in Chicago. Dr. Merle Diamond. I live in the Pacific NW, but I traveled to go here. They help people from all over the world.
    Best thing I ever did for myself. I was able to go back to work for 6 years with mild to medium migraines. But they did come back more intense again and Chronic daily headaches. But I learned so much from them. Was an inpatient program for 9 days in their hospital and the found the right preventative’s and pain killers that I still use 14 years later. They will help you. I promise!

  • mb
    3 years ago

    in all of the years… we’ve never figured out definitive triggers. It feels hopeless and I feel helpless to help the migraineures in my life. Migraines just suck. Having a family member who died of cerebral hemorrhage just makes it more stressful.

  • 20qjsi2
    3 years ago

    My husband will say, “Sit on the stairs and get some air, or take a walk around the block”. I have a migraine, none of these things he is suggesting is going to make me feel better whatsoever.

  • Sisipu
    4 years ago

    Words often fail me when people say these things. While they might be well intentioned, they clearly don’t know me. As most of you do, I ask so many questions, read a lot about migraine, do my own research, try alternative approaches…. After 11 years of Daily, Chronic Migraines, it’s hard to hear some of the things people say. My teenaged son says some really ridiculous stuff. “You felt fine yesterday so why can’t you go to (fill in the blank) with me today? I know. You don’t love me, right?”
    It’s frustrating to have to repeatedly tell him my truth and reassure him. He doesn’t want to learn about migraines. Okay. But, I want him to have some compassion and stop playing the victim. Anyone else have teens who have a hard time with an ill parent? How do you cope? Thanks!

  • rhorho
    4 years ago

    Just get up and move around and you’ll feel better.

  • Trish
    4 years ago

    I’ve also had people suggest that my long hair us what causes migraines and they would be sooo much better if I just cut it all off.

  • laylalynne
    2 years ago

    Lol. I’ve heard this one! How ridiculous! I tried cutting my hair off to help the migraines but guess what… Absolutely no change!

  • Tina
    4 years ago

    I’m not a fan of those who say that they have a migraine…but they are eating, drinking, laughing, talking, etc. OR those that say that they are having a migraine attack but all they have to do is take 2 Ex. Str. Tylenol and it goes away.
    Really???

  • I_am_not_my_migraine
    4 years ago

    In response to #10 “Have you tried this?” – I’ve heard many versions of this but last year a well-meaning coworker plumbed new depths with a completely inappropriate spin on “wanting to help.” With medication on board, I had managed to come to work several days in a row with migraine. My coworker pulled me into a private area of the office to let me know he was concerned about my headaches and that he had been doing some research on the topic. He and I weren’t particularly close so I was surprised by – and a bit suspicious – of his compassion. Despite having no interest in hearing the yet another “helpful” soul suggest this or that remedy, I let him keep talking. He let me know that he’d been reading up on migraine “cures”. I could tell he was searching for just the right way to ask me if I’d tried whatever it was he’d read about. He stammered a bit before blurting out, “Have you had an orgasm lately?” YES! REALLY! Apparently he’d read that orgasm is a cure for headache. He went on to OFFER HIS SERVICES. Under the best of circumstances, there’s no way this conversation would go well but three-days into a barely manageable migraine…I was furious. So…there you have it. The worst well-intentioned cure suggestion.

  • Sisipu
    4 years ago

    IANMM:: Wow. What a f$&@-ing jerk! I would have reported the incident. I have so much compassion for you having to work with him. And am so sorry that this happened. He was definitely not looking out for your health. Hope it hasn’t happened again.

  • Tina
    4 years ago

    Believe it or not, I recall years ago reading something similar w/the belief being that an orgasm releases endorphins which help ease the pain. The same endorphins released when you workout. Now, I don’t know if it is effective.or not across the board.for everyone but I have a friend whose wife found it to be effective. However it also could be a way to get around, “Not tonight. I have a headache.”

  • Tina
    4 years ago

    Believe it or not, I recall years ago reading something similar w/the belief being that an orgasm releases endorphins which help ease the pain. The same endorphins released when you workout. Now, I don’t know if it is effective.or not across the board.for everyone but I have a friend whose wife found it to be effective

  • scotchbonnet
    4 years ago

    My friends quote, “at the end of the day you are what you eat, I only eat healthy, so I don’t get headaches”, second quote from another friend, ” oh, if I suffer from Migraine I just have a cup of tea and all is well”. If only!!!!

  • kanzz
    4 years ago

    Add this: “You really need to do something about those headaches of yours.”

    Oh my! That’s such a great idea. Why didn’t I think of that? And how is it that I’ve gone.. what? maybe 50 years with these Migraines, and not thought of that myself?

    And, let’s call it what it is, please. It’s Migraine. Not just headache.

  • toomany
    5 years ago

    I have had migraines in various stages and types for over 30 years. Some have been so bad I just wanted to drive off of a bridge, but never did I consider or will I ever the possibility of applying for disability. Why? Because there are many times that are so enjoyable in my life, times where I feel just wonderful, times that I am productive. There are also many people that are in hospitals dying and in constant pain, that do not have a choice to hide their pain. Many migraine sufferers are offended when people suggest things to try, I am not. I want to try everything and anything that may just work. I have heard for many years about diet, and always poo pooed the idea, not anymore. I am minimizing any processed foods and looking for things like MSG ( monosodium glutamate) . Eating healthy, I first decided it did not have an impact on me, but then I started reading the back of salad dressings and dip mixes…yes, most contain msg. So now I either make my own dressing or if in a pinch look for bottles without it. For years I made my own gravy with chicken or beef stock, now I have to look for the ingredients on those containers because they also contain msg, just as most soups do. Now that I am back on a healthy regiment and watching the msg, my headaches have gone down significantly and are not as severe as they used to be. So to all of those that do not want suggestions of things to try, too bad for you. You may be just missing out on the one little thing that will help. Who want to live a life of being disabled and missing out on weddings and birthday parties and family gatherings? Not me…I want to enjoy life while I am on this earth. Throw all of your suggestions my way, I will try them if I have not already. Just look at the amount of people that get migraines now, even young children. Now look at the amount of processed food we eat compared to when we grew up. Look at all of the junk we eat, all of the fast food. Growing up, if we went to a hamburger stand it was memorable, because we always ate at home. Going out for dinner as children was unheard of. Now everyone goes to the big box restaurants that use all of their own pre-processed foods. Just a thought. Some migraine sufferers I know say they do not have time to make fresh food. I say, I do not have time for migraines!

  • FrancesS
    2 years ago

    Also watch out for “aged” cheeses. The aging process causes a chemical reaction that causes migraines. Foods are definitely triggers!

  • rhorho
    4 years ago

    Excellent point. I agree.

  • livinwithmigrainepain
    5 years ago

    I have been surviving chronic migraine pain for 28 1/2 years; they run in both sides of my family, so I had a 90% chance of having them too. I have been offered so much useless advice, I could scream at times. Everyone thinks they are “helping” you with their words of wisdom, but unless they walk a mile in my shoes, you have no flipping clue. I have heard the following: maybe you should eat, try not to think about them, be positive, quit feeling sorry for yourself, you just want attention, it can’t be that bad, have you gone to see a….(various dr’s and so on, fill in the blank),have you tried to lose weight, have you cut….(what ever ingredient the person thinks is my issue)this out of your diet. There are so many more. I have reached the end of the line with treatments. Pain management release me from their services, because they could not even lessen my pain. Right now Botox only lessens the frequency and I take that as a blessing, it has helped save my sanity. Even with the reduction of frequency; I am still considered disabled and can not work, plus I still get dirty looks from people who think I am faking my illness.

  • Sarah
    5 years ago

    I have had episodic migraines for 7 years and I have missed the past month of school because of a really bad episode. The two things that I can’t stand that people say to me are “its just a headache you are tough you can make it through the day” sorry but clearly you have never had a migraine because it doesn’t work that way. Also “just drink some water that always helps me” um I have been out for a month you think I might me a little past that point.

  • Rebecca
    5 years ago

    Hello Everyone! I have had migraines since I can remember. I am 54 years young. Growing up all I heard was “It’s all in your head.” As a child you start to think “Am I making this up.” As a young adult I was told it’s a women thing. At 35 I had all my women things taken out (total hysterectomy for pre-cancerous cells I was told) and nothing changed with my migraines. In fact my migraines just keep getting worse with every year that passes. I have heard all 12 of the negative reactions all my life. Lost job after job, friend after friend. For me the scariest comment anyone made to me was from a Dr. who said “We have tried all the medications and therapies. THERE IS NOTHING MORE WE CAN DO FOR YOU.” For a few days I was totally devastated/depressed. I went for a second opinion. Just finding a Dr. that understands and willing to stay on top of migraine news is so helpful. This Dr. moved away several years ago. I am still looking for that “kind” of Dr. It is hard, but I will not give up. Anyway, I am so thankful for finding this place with others who understand. I hope to make friends here. Blessings to All!!!

  • rhorho
    4 years ago

    I empathize with you for I have had more than one doctor inform me that there was nothing else they could do for me. Once in the ER this doctor was being very resistant to helping me get my pain under control because she just couldn’t phathom that it was as severe as I said it was. I asked her if she had ever had a migraine and of course she had not. I asked her please to not judge me based on something she had no knowledge of or experience with. She fortunately saw my point and decided to help me but other doctors have not been as rational or compassionate.

  • Ellen Schnakenberg
    5 years ago

    Paddra, Here is a link to help you locate a Migraine and headache specialist: http://migraine.com/blog/looking-for-a-migraine-specialist/

    ~Ellen

  • Marlene Price
    5 years ago

    what bugs me is when someone complains about migraines & doesnt go to a doctor or wont take any meds for them. i had tried almost everything. jeezus DOO something, not just complain.

  • Jessica Bennett
    5 years ago

    Sometimes easier said than done. I am new to migraines, 7 months. I do not have health insurance so I cannot see a specialist or get on medications until I do. Believe me I want to do something about it.

  • Beth Yeprem
    5 years ago

    I’ve had them for over 30yrs..but started w/a vengence in 2011..since then..I’ve lost friends I’ve had since I was a child..that’s over 40years! I’m lost, alone & scared. If this was cancer or other deadly thing.. I think I’d have more folks then I could deal with..but Migraines…they all are gone! I’m scared & hate it! I do try to not let migraines slow me down or show..& I don’t want pity or folks to feel sorry for me. I try to keep life normal..but I’m on an extension of my final write up at work..so I can be fired t anytime..and well.. all of this due to my migrained! So..I’m w/out my friends..and at any point my job.. Life sucks with no chance of it getting any better!

  • SilverPhoenix13
    3 years ago

    So far, I’ve been lucky with my current job because they have never written me up for my absences due to my migraines. In fact, I’ve never been written up or had any sort of disciplinary action for anything. So, if they fire me over medical reasons, they’ll be in for a world of hurt, especially since I have been completely open with them from the time I was interviewed that I have a chronic disease. Currently, I’m in the process of filing for FMLA in order to protect my job and my benefits.

  • rhorho
    4 years ago

    I was once fired because of my migraines and I eventually had no choice but to go on disability. I was unemployable due to severe chronic pain and debilitation. I also understand the “alone” thing. I once had a fiance who broke it off because he said my migraines brought him down too much. To handle these things, I began focusing on my spirituality. I’ve since become more self-reliant and less fearful. Also, I never feel alone when I’m with God. Hope things get better for you soon.

  • kanzz
    4 years ago

    What about FMLA? It is there to protect your job. Twelve weeks of leave per year is a lot of leave.
    http://migraine.com/migraine-basics/family-medical-leave-act-migraine/

  • Marlene Price
    5 years ago

    i feel i have lost several jobs directly or indirect due to my migraines. i definitely feel like i have a disabilily.

  • Andrea D
    5 years ago

    How about, “Have you prayed about it?” That one infuriates me.

  • rhorho
    4 years ago

    My dad insists I not lie down with migraine but spend countless hours sitting up in my rocking chair praying and meditating. I can barely think or hold my head up so that does not work.

  • Paula Perry
    5 years ago

    Moderator, I posted before reading the guidelines. Feel free to remove my comments that mention medications. Thank you for this excellent forum.

  • ithurts99
    5 years ago

    My mother when I mentioned I had a migraine would always say “What causes those?” and of course I just wanted to scream that if I knew I would fix it. And this went on for decades since I was born having a migraine exacerbated by a prolonged forceps delivery. M y father said the first time he saw me I had blood running down both sides of my face from my temples.

  • april
    5 years ago

    Let me add; I am a 60 yr old woman with 30 year old friendships… I’ve suffered with migraines since I’m a child.

  • april
    5 years ago

    Worst for me is my friends who pretend I don’t have migraines, or seem to feel that it’s such old hat that they don’t need to remark/be compassionate/ caring.Sometimes I feel like I am inconveniencing them because I have yet another migraine and can’t do/ go somewhere. It seems that when you have a chronic condition empathy flies out the window. They just don’t want to hear about it and seem to have no patience for it. Do anyone else deal with this/ do I just have unsympathetic friends???

  • SilverPhoenix13
    3 years ago

    When it comes to my family, it’s mixed. My mother and grandmother are staunch supporters. My grandmother used to get migraines that stopped when she hit menopause. My mother still gets migraines, but not as often. The rest of my family, it varies. I have one cousin who, apparently, thinks I’m faking them. She’d never tell ME this, of course, but she told it to a friend of mine.

    As for friends, I’ve been lucky. I’ve never had very many to begin with and the handful I do have have been my friends for many years and are extremely understanding, especially as my disease has progressed.

    Most importantly, my fiance has been absolutely amazing. He has been nothing less than kind, caring, and supportive of me in the 3 1/2 years we’ve been together. It’s for him I fight this the hardest because I want to be able to walk down the aisle on our wedding day and not be fighting excruciating pain and nausea among all my other symptoms.

    The area where I have the hardest time is at work because of my absences.

  • rhorho
    4 years ago

    Sometimes people don’t know how to comfort you especially when it happens so often. And the longer they deal with it sometimes the more unsympathetic they become. Try to remember that the symptoms of this illness is unfathomable to people who don’t have it. Also, it’s difficult to see someone you care about be constantly in severe pain. This is a lonely illness. I turn to God.

  • Ellen Schnakenberg
    5 years ago

    sapril – You’re not alone, although I wish this was an isolated incidence. Most of us have lost friends and family due to chronic illness. It’s one of the most difficult parts of having this disease in my opinion. I often think it’s because our loved ones really don’t know what to say anymore. You know, we didn’t sign up for this did we? But it’s important to remember that they didn’t sign up for it either. Here is a link that might be helpful for you: http://migraine.com/migraine-and-mental-health/eight-emotional-stage-of-living-with-migraine/

    ~Ellen

  • Stephanie Wells
    5 years ago

    My personal favorite-“you should just take a walk! That always gets rid of MY headaches”!

  • Ellen Schnakenberg
    5 years ago

    Stephanie Wells – Oh NO! Ugh!! I still get that one…

    ~Ellen

  • karen06
    5 years ago

    sitting here right now with a good migraine..but what to do now..so tired of doctors and medicines that dont work. Love the excedrine advertisement since the last 2 specialist told me never take them..hmm maybe because i eat them like candy. Tried the chiropractor too..didnt help..so..now what..or and a new symptom has arrose..swelling ankles ..just great..

  • SASmith
    5 years ago

    I just got diagnosed with migraines and I guess the first thing that’s come to mind when I try to explain what is happening to co-workers is “well, we all get headaches.”

    Yeap … they’re all the same, right folks? I hate to say that I’m happy to have found y’all … but there’s something about the “virtual companionship”.

  • Tracy Wood
    5 years ago

    I worked at a place several years ago that didn’t understand and it was such a challenge. For a while, I was going to the chiropractor every day or every other day to try to get some relief (I was determined to try everything possible). I was going on my break each day (not taking time away from work). Even though I was going during my break, I was approached by my boss and asked to provide a note from the doctor for my trips to the chiropractor. He said that one of the managers said that they thought I was lying about my headaches because “I didn’t look sick”. I told him that it didn’t help anyone (including me) for me to walk around and show how I really was feeling. I did what he asked and provided the doctors note to show that I was actually going to the chiropractor but I did ask him if he was going to require the others to have a note from McDonalds or wherever they were going on their break. Thank goodness I don’t work there anymore (in large part because of this ongoing conflict). It is their loss. I got a much better job and they are more understanding (although anyone not going through this cannot completely understand).

  • seagypsy
    5 years ago

    I just copied this article and sent it out (with full credit to Ellen and http://www.migraine.com) to my co-workers after coming back from a medical leave for a four-month migraine. It was an eye-opener for many of them and some were very supportive. I am so very glad to have found this site. I have heard every single one of these comments from people at some point in my life. It can be beyond depressing.

  • DeAdrian Bennett
    5 years ago

    I have extended migraines also. I was told ” there is no way in the world a headache can last that long.” It does get depressing and frustrating, especially if they have never experienced a migraine to know how it truly feels.

  • Zakaria Fatal
    5 years ago

    Funny and ironic how I ran across this article when just thirty minutes ago I was told I don’t have real migraines. I’ve had TMJ for sometime now. Anyone that suffers from it knows the intensity of these type of headaches. It’s a chronic condition. Why this person believes that I don’t suffer “real” migraines is beyond me. What are the prerequisites? LOL.

  • Andrea D
    5 years ago

    I have suffered with migraines and TMJ since I was a pre-teen. A few months ago I found a neuro-muscular dentist who has helped me TREMENDOUSLY. I was having daily migraines in May, June, and July of this year despite taking Topamax. I am happy to report I have stoppe3d taking Topamax and have not had a full-blown migraine since starting to wear an oral orthotic this amazing doctor created for me. (This is not the same as a splint or bite-guard that practically any dentist can make, though it is similar.) I highly recommend looking into this. You might Google “neuro-muscular dentist,” and see what you find. Apparently there are not very many of them.

    Occasionally I still have some symptoms, and I am only a few months into this therapy, but so far, I am thrilled with this approach. I am not suggesting it is a cure-all or that it is appropriate for everyone, but I feel like shouting about it from a mountaintop in case someone else could get the kind of relief I have gotten as a result of trying it. Good luck to you.

  • Paula Perry
    5 years ago

    Zakaria, Your doctor (or whomever) did not explain very well. Migraines are “different” NOT “more painful” than TMJ Headaches.

    I have both, I can control my TMJ with ice, facial exercises, and preventive measures (like not using straws or chewing ice).

    Good luck finding a way that works for you – to relieve whatever kind of headaches you are suffering from.

  • Michelle Meacham
    5 years ago

    I have struggled with migraine type headaches and depression for many years, and strongly believe that it’s a chicken & egg situation — it’s nearly impossible to say which came first. That means the only approach that has any hope of being effective is to address both issues simultaneously. The most offensive “advice” I have received includes being told to stop using caffeine, to take different vitamins, try different herbal supplements, exercise differently, use Tylenol, have my hormones checked, get a massage, etc etc. GEE, really???? As if I hadn’t already thought of and tried every single combination possible over the years!!!! I know people mean well, but sometimes their ill-informed comments are actually really insulting.

  • Paula Perry
    5 years ago

    Michelle, have you tried medications that are to prevent headaches or that relieve Migraines?

    I have had migraines for over 50 years. Diet, message, avoiding triggers etc never made any difference.

    “Preventatives” never worked for me, most of them just made me feel tired and did not lessen the occurances of migraines.

    I found one doctor who could relieve my migraines with Accupuncture, but the best any other accupuncturist has done is relax me a little.

    The medications, to actually relieve migraines, did sometimes relieve my migraines, but made me feel like I was having a heart attack (taking them was so scary and the pill form was not any better for me).

    I did not get real relief until the newer medications, some are now out in generic and are affordable.

    Good luck finding what works for you.

  • Paula Perry
    5 years ago

    Michelle, have you tried medications that are to prevent headaches or that relieve Migraines?

    I have had migraines for over 50 years. Diet, message, etc never made any difference.

    Preventatives like BetaBlockers never worked for me, most of them just made me feel tired and did not lessen the occurances of migraines.

    I found one doctor who could relieve my migraines with Accupuncture, but the best any other accupuncturist has done is relax me a little.

    The early Immitrex injections did usually relieve my migraines, but made me feel like I was having a heart attack (taking them was so scary and the pill form was not any better for me).

    I did not get real relief until my doctor prescribed Maxalt. They dissolve in my mouth (which is good because I have great difficulty swallowing pills while I have a migraine). They always relieve my migraine within 20 minutes. I took them even when they were $10 a pill! Now they have a generic and I can get 6 for $2!!!

    Good luck finding what works for you.

  • jodgo25
    5 years ago

    I think I have heard all of these comments at least once (some of these I have heard hundreds of times) People who have never had one REALLY don’t understand what we go thru. Migraines effect your entire body, not “just a headache!”

  • Paula Perry
    5 years ago

    I was glad to see the fact that migraines effect your entire body validated! Many people do not know about the relationship of migraines to stroke and even death.

  • Chaundra Savage
    5 years ago

    I never mind people knowing who I am when I post to sites similar to this one. I am Chaundra James-Savage migraine sufferer since I was 12. That seems to be the magic number with us girls yeah? First of all Nancy Harris Bank thank you for your wisdom and soothing words. You are great inspiration and support! Thank you! I get great support from my mom, thank you MOM, I love you!!! She worries about me even though she is suffering from the effects of Rumatoid Arthritis. I have no less than 6 to 8 migraines a week and have for the last four years. I have always had them but I have been diagnosed with Hyperthyroidism in the last few months. They claim my “headaches” will lessen once I have the right meds. HA! Been doing this for years people, not likely! Anyway, I have changed so much in my diet…oh my gosh, I have stopped eating tomato based foods, aged cheeses, wine, meat, pungent foods of any kind, citric fruits…and the list just goes on and on…..in about two minutes I will only have a banana to cling to…lol…However, I loses days…once I lost a whole week so I understand…oh, the sun is a trigger for me and so is the barometric change when it rains…I live in Tennessee folks, you got one or the other at all times. I live like a vampire and sleep all day and up at night washing clothes and doing dishes. I have heard they found a migraine gene somewhere…I don’t remember where as my memory is junk because of the migraine. Oh, another lovely thing about being me is that I can’t take anything but Tylenol because I am allergic to Ibuprofen and Naproxen Sodium so Acetaminophen is my only resort. My doctor does not believe I have migraines, tired of switching doctors so I just go to the E.R….expensive! I mostly wanted to say, Hang in there Migraine sufferers, you can…we can do it!!!

  • Nancy Harris Bonk moderator
    5 years ago

    Thank you for your kind words. Being able to support people with migraine and headache disorders is an privilege and honor for me.

    Nancy

  • Kasey
    5 years ago

    One of the most challenging remarks for me is this “you need to go to counseling” or “you are depressed” 🙂 Counseling is not a cure for chronic migraine. I have between 12-17 of them a month. I do have episodes of depression, who wouldn’t in this kind of pain. I am so tired of losing entire days to this disease. I don’t need someone telling me to “just get over it”, or go to the gym etc. What I do need is SUPPORT and KINDNESS and when I can’t even prepare my own meal, help with that. This week I lost 3 entire days to migraine and my husband actually came home at lunch wondering why I hadn’t prepared it. Honestly, I don’t think chronic migraineur’s should marry or have children. We just are not able to be what they need.

  • Nancy Stein
    5 years ago

    As a chronic migraineur who also has fibro, I think you can be married and raise kids if your spouse truly “gets it.” I am extremely fortunate in that realm; my husband is my true soulmate and has always had a gift for stepping in without enabling. My children were taught from an early age to take what I could give and understand that some days were good and others were bad. They could dial for pizza or ask neighbors for a ride to school if needed.
    It has not been perfect. I have missed events and milestones. But my kids are grown and we are very close; my husband and I have celebrated 26 years of an incredibly happy marriage and I have a successful career. ALL OF THIS has come with difficult times mixed in, resentments acknowledged and discussed, compromises established.
    Weirdly, I have never had true depression. My neurologist sat my husband down before we married and discussed my diagnosis and the fact that this was REAL. My husband “got it.”. That has gone a long way towards helping me avoid the completely understandable depression.
    If your husband will accept it, I strongly suggest some joint sessions with a therapist who specializes in chronic illness. Getting information from an outside professional source can really help.

  • Nancy Harris Bonk moderator
    5 years ago

    Hi Kasey. Kindness and compassion go a long way in any chronic illness. And you are correct, at this point, there is no cure for migraine.

    But here’s the thing, it’s really hard not to be depressed when we have chronic migraine. In fact migraine and depression can be comorbid conditions – this means they can occur at the same time but are not caused by one another.

    A very important part of any migraine management plan I don’t think is discussed enough is self care. Not the routine day to day self care, but taking care of our inner ‘self,’ maybe being mindful is a better way to put it. I work tirelessly in attempts to not beat myself up when things aren’t accomplished around my house or in my life during to chronic pain, migraine and other issues. I’ve tried to come to terms with this is my life now, and I can I make the best of it. Don’t get frustrated with me, but the only way that helped me accomplish that was with a counselor. It’s not for everyone, but sometimes we need help learning how to cope with chronic health issues.

    We understand and support you even when others don’t, we’re glad you are here!

  • jamespluth
    6 years ago

    Had severe migraine all my life (81 years)Had a stroke after knee replacement which was due to an atrial septal defect. This was closed and from that moment to present ( 2 plus years)have never had another headache. Lately there has been interest in this relationship in medical circles- thus would suggest if this is a severe problem-check with your cardiologist. PS ASD can now be closed with a catheter (no open heart surgery)

  • Ellen Schnakenberg
    6 years ago

    jamespluth – I’m so glad you were able to find relief for your Migraine attacks! PFO closure was studied in the last few years because anecdotal evidence like this led doctors to wonder if closure might be helpful to Migraineurs. Many patients underwent surgery to close the defect in their heart. Unfortunately, it is not a cure-all. The study itself was actually stopped because there weren’t enough people finding good results as you have had. Closure may relieve one trigger or complication for Migraine, but if other triggers exist as well, it may not be as successful as yours seems to have been. Migraine itself is a genetic, neurologic disease and is not a symptom of heart defect. Optimizing our overall health is often extremely helpful in feeling better and even helping our Migraine disease! Congratulations!

  • Nancy Harris Bonk moderator
    6 years ago

    Hi j0eschm0e,
    Thank you so much for sharing your story with us. It’s always nice to hear about something that works. And you are right, skipping meals can be a Migraine trigger for some. Something to keep in mind is that when we are discussing migraine disease what works for one person, may not work for another. Another issue is that V8 juice could be a Migraine trigger, and we don’t want to add more triggers if we can avoid them.

  • j0eschm0e
    6 years ago

    sometimes, people go too long without eating properly. then they have a drop in their blood sugar levels, which produces a headache. I am glucose intolerant. one step away from insulin dependant diabetic. if I go too long without eating Ill have a low blood sugar crash. along with a migrain for a few hours. hate that. V8 juice on hand, is like instant relief. it makes me come out of the low blood sugar crash within seconds and I feel much better for a few hours until need to eat again. quick fix and good for you. so buy a regular V8 vegetable juice, have it on hand, and try to drink it before the headache is full blown or else youre going to have a headache anyway. if you start to feel youre going to have a headache coming on, thats the time to drink a V8. test it out, it is well worth a try =)

  • fknhurts
    6 years ago

    I think mine are triggered by my Epilepsy and not the meds I take for it. in Florida the legislature introduced medical marijuana on the ballot this year but since have removed it. I would have gotten a script for that from my neurologist. stupid Government .

  • rhorho
    4 years ago

    That’s a shame. I used to smoke marijuana for migraine relief and it almost always worked. Hopefully the government will continue to move toward legalization. The sooner the better.

  • Paula Perry
    5 years ago

    Watching me all these years, my husband is surprised they have not diagnoised me with Epilepsy. Does the marijuana relieve your migraines?

  • Paula Perry
    5 years ago

    Yes, I was 12 when I started having migraines. Many women (like my mom) stop having migraines at menapause. No such luck for me.

    After 54 years, I am “allergic” to all pain relievers including narcotics (I couldn’t even take anything after knee replacement, believe me, I tried!)

    If your doctor doesn’t listen to you or isn’t knowledgable about migraines, switch! You might ask if you can try the new medications. If you don’t actually have classic migraines, it won’t work, but it is worth a try.

  • fknhurts
    6 years ago

    if I was in the middle of a migraine and some said to me “it can’t hurt that bad” I don’t care who it was, I’d punch them in the face as hard as I possibly could and say that back to them ans see how they felt.

  • melbykins
    6 years ago

    I really get angry at the comments I get. Apparently I need to smile and act like my head feels like it isn’t about to explode! Education is definitely key

  • Paula Perry
    5 years ago

    I’m an RN. I was making final rounds on 3-11. I was determined to take care of my patients and not show how my head was hurting. As I left the room and asked if he needed anything else, this guy said, “Tell me, do you always have that ____ eating grin on your face?”

    Sometimes you just can’t win.

  • yellow95
    6 years ago

    I Totally agree with U!!!

  • Nancy Harris Bonk moderator
    6 years ago

    Hi j0eschm0e,

    As we noted above, it’s great that V8 juice works for you, but again we have to caution that Migraine is not a ‘one-size’ fits all and what works for you may not work for others.

  • j0eschm0e
    6 years ago

    try drinking a V8 vegetable juice. it is well worth a try. drink it just as it starts or before, dont wait till its full blown headache. but if you already have the headache drink it, to refresh your bodys cells that are lacking nutrients. some peoples bodys consume their blood sugar levels quickly, and have a drop in thier blood sugar levels and that causes a migrain from hell. try a V*, I cant explain enough how much you will feel better. its worth a try big time. =)

  • Art Girl 27
    6 years ago

    Really liked the article. I happen to have a low grade migraine-y headache today. Had severe one at work on Friday. It’s just about every day of my life, low grade to high grade depending on triggers. Stress will always be with us so that’s bunk – i.e. lowering stress. I started getting migraines more frequently a few years ago then had a nasty health issue involving a “neuro-event” 2 years ago and have had daily headaches since them among other things. It’s not in my head; sometimes some things work, sometimes the same remedy doesn’t work that day. So it’s really about taking care of myself 1 day at a time.

    I also have a sister with a really nasty, deadly, chronic illness; I can literally SEE the migraine coming over her. So it’s not just a one fix for all thing as everybody is saying; each person “works out their own salvation” when it comes to migraine but yeah, the attitude is you don’t really have a migraine if you’re still standing…which is NOT true. Chronic can be LOW GRADE with severe flare ups thank you very much.

  • Nancy Harris Bonk moderator
    6 years ago

    You are so right, Art Girl. It’s great that you know stress can play a role in your migraines, but I wonder if you’ve kept a migraine journal lately to see what your other triggers are? We have some great tools here on the site that are easy to use and very helpful.
    Having a sibling with a chronic illness that is deadly must be very scary at time. Try to take care of you too, ok?

  • major headache
    6 years ago

    I have had migraines since I was twelve. Some persons who worked for me in the past would beg off claiming migraines. I required them to return with a doctor’s note. They would balk at that and most would just show up for work or request a personal day. Only one person in 27 years did as I asked,

    I can’t stand people lying about something that has affected me my whole life. My family finally figured out that I wasn’t lying as I reached adulthood. However, the neurologists all have told me that I must change my lifestyle in one way or another, without even asking me about my lifestyle.

    What has always worked for me is that when I get a migraine, I have to take at least six 200mg motrin and get some sleep. I’ll have a hollow feeling in my head for the next couple of days, but it’s far better than having to deal with the auras, nausea and the left arm numbness I get.

    One thing I have also noticed in recent years is that since I have become a writer, the migraines are almost as frequent as they were when I was a teen. After working on a particularly long article, I have to eat something, take some motrin and drink some water, right before taking a nap. If I don’t do all these things, the headache lasts a minimum of three days. It hurts, but I do enjoy writing and will deal with this as just another issue of living.

  • rhorho
    4 years ago

    I despise people who lie about having a migraine. This is the reason it’s so difficult to get help in the ER.

  • lance
    6 years ago

    Are migraine sufferers mostly women? I’m sure really data is not that hard to come by but it seems that everyone I have met with real migraines (not headaches that people call migraines so they can go home from work) all seem to be female.

  • Teri-Robert
    6 years ago

    Lance,

    Good observation – 75% of Migraine sufferers are female.

  • rudykipper
    6 years ago

    Don’t know but I am male and have had migraines since youth (now over 55). When young, no one would understand so I usually became nauseaus and lost several hours at a time.
    Finally my normal cure is a blue gel ice pack, darkness,a bed
    and a coke with excedrin. The ice pack is so cold it hurts where i apply it. However, it numbs the migraine location. I am usually better in an hour.

    Due to heart issues no medication was deemed viable.

  • brian glenn
    6 years ago

    I’m very fortunate to have found the cause of my migraines after 4 + years of misery. TMJ. Opioids have been a blessing. Even doctors told me it was all in my head. Then there is the crowd that says….”Oh no, your going to be a drug addicted crazy man if you take opioids”! It’s my pain, I deal with it the best way I know how too. The benefits outweigh the negatives.

  • Nancy Harris Bonk moderator
    6 years ago

    TMJ may be a trigger rather than a cause of Migraine. Migraine, a genetic neurological disease is thought to be caused by a cascade of events and overly excited neurons in our brains that are easily triggered by certain stimuli. These stimuli include changes in the weather, hormones, dehydration, sleep issues, and certain foods to name a few.
    While I’m happy you have found relief from pain, opioids aren’t the best alternative out there. An information article can be found in this link; https://migraine.com/blog/new-research-shows-abnormal-pain-processing-in-medication-overuse-headache/

  • SHARON
    6 years ago

    I have suffered with migranes since age 12,I’ll be 62 on my birthday. If one more person tells me they had amigrane the night before and took a Tylenol, one just one, I’ll will be forced to strangle them. If you really are a true sufferer you know that a tylenol will not fix the pain. I prayed every day that my children would not inherit them. So far so good. My heart goes out to everyone that suffers. At least now we have more medication and it’s not hidden away..

  • PattyL
    5 years ago

    Amen,

    To this day the ‘ take a pill’ is the one line that frustrates me the most.
    IF I COULD TAKE A PILL TO CURE ALL THAT ALIES ME I WOULD DO SO.
    I think the line offends me because of the ignorance around it,,, and the lack of compassion. I am pushing 49 the migraines over the years have changed right along with me.
    But the ‘take a pill’ still provokes the same ‘are you kidding me response’ from me.
    Unfortunately, I have passed this trait to both of my children, The one positive point is since they know what they may face, they are careful and take the clues of a migraine attack seriously.
    For those who get ‘bad headaches’ and Tylenol helps them, I am happy for them. I do not wish one of my migraines on anyone.

  • Nancy Harris Bonk moderator
    6 years ago

    I find those folks who say that either have never had a Migraine attack or have only had a few that have indeed been relieved with Tylenol, lucky them…

  • suzizobair
    6 years ago

    my personal favourite ‘you should find out what’s causing it’….I feel like saying – ‘really, I hadn’t thought about doing that in the 20 odd years I’ve suffered. Silly me’. But I don’t as I’m too polite.

  • Nancy Harris Bonk moderator
    6 years ago

    That’s rich! Stump them with this next time – Migraine is a genetic neurological disease thought to be caused by a cascade of events and overly excited neurons in our brains that are easily triggered by certain stimuli. These stimuli include changes in the weather, hormones, dehydration, sleep issues, and certain foods. Then see what they say!

  • mamalou
    6 years ago

    Here is one I receive chronically from well meaning family and friends: What IS your neruologist doing? This should be fixed by now. You should go to this medical Center – I know it is farther away, but it was just rated the number one hospital in the US by USNews and World Reports, (pick your poll…). First in what, I ask? Migraine research and treatment? Excellent benefits to their employees? Overall cleanliness and reduced infection-born re-hospitalizations? BEST in WHAT? Who is their TOP Migraine neurologist and does she see patients RIGHT NOW?

    The reaction is usually mixed with lots of hems and haws and well, they are ranked number 1 in the US right now and your neurologist isn’t even in a major metropolis. I only want what’s best for you. (Even though I’ve never met or spoken with your doctor, I have never known that she has colleagues in the field all over the world and they consult on cases, including yours, on the best practices and gold standards for chronic hemiplegic migraine and the most current effective treatment.)

    Some silence follows. A few deep breaths. Then, “But She isn’t even mentioned in USNews and World Report!” Don’t you understand that you could be getting better care faster? I cross my eyes and do four belly breaths…smile sweetly and watch the auras begin to float around the room…

  • Nancy Harris Bonk moderator
    6 years ago

    I’ve often added, it’s best to pick the doctor not the clinic, even if they aren’t on US News and World Report. People….

  • pooh2you
    6 years ago

    Ahh!! My mother is a famous one for giving me “ideas” to “help me” with my migraines. She is always reading something or hearing something somewhere that can help my migraines get better. I hear almost all of these things from others too. Esp if I have to cancel on a social event. Just take a pill and it’s just a headache, have a few drinks and you won’t feel it are the famous ones then! It can be so frustrating.

  • rhorho
    4 years ago

    My mom always diagnoses the cause as something I’ve done to myself and then says, “You’re not even trying to get better.”

  • Nancy Harris Bonk moderator
    6 years ago

    Sometimes, I find people who truly love us may provide us with suggestions (good and bad) because they feel helpless to do anything for us. It’s there way of “helping.”

  • tucker
    6 years ago

    You don’t look sick – sometimes I just have to cry in my chair at work instead of going to the bathroom since I rarely puke (but the nausea is really high). But I guess the alternative is that we could all paint big red splotches on our bodies???

  • Nancy Harris Bonk moderator
    6 years ago

    Or wear band-aids on our heads?

  • jodiesprings
    6 years ago

    I have migraines all the time and people just don’t understand. They tell me these things all the time!

  • Nancy Harris Bonk moderator
    6 years ago

    It’s awful isn’t is jodie. People who say such things clearly have never had a Migraine attack before.

  • naolstaylor
    6 years ago

    I’ve had 6 out of the 12 this week. It’s been lovely. I’ve had a headache since Aug 3, non stop.

  • PattyL
    5 years ago

    Hang in there!
    Knowing the pain of others since I am similar still does not give me anything of substance to offer you . Small steps is what I take just to get to the next moment.

  • Ellen Schnakenberg
    6 years ago

    I’m so sorry naolstaylor. Hang in there. I think most people simply don’t understand that what they’re saying is not helping us.

  • Poll