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An Open Letter to People Without Migraine

An Open Letter to People Without Migraine

I have a migraine attack every single day. I tell you this not for pity or shock value, but to beg for a smidgen of your comprehension. I want you to understand that migraine is not just a bad headache, but a neurological disorder that can affect every system of the body. You see, the unbearable head pain that migraine is known for is only one symptom of the illness.

#throwbackthursday

Sharing some noteable migraine symptoms

When I say “I have a migraine,” I mean that I am horribly nauseated, dizzy, weak, and have flu-like lethargy and fatigue. My legs tremble so much my knees buckle. I cannot think clearly enough to write a coherent sentence, common words elude me, decision-making is nearly impossible. I am overwhelmed by mood swings, including suicidal depression. Light, sounds, smells and touch are magnified beyond annoyance. And the head pain is so severe that even moving my legs while lying in bed causes me to moan in agony. These aren’t all my symptoms, just the most notable. Nor does the list represent all possible migraine symptoms someone can experience — I am fortunate in that I don’t have endless vomiting or diarrhea,numbness and tingling in my limbs, temporary paralysis, or loss of vision.

The real impact of chronic migraine

The misunderstanding that migraine is just a headache that can be treated with over-the-counter painkillers and a nap or avoided entirely by not eating chocolate or not getting stressed is not only wrong, but disregards the enormous suffering of the more than 37 million migraineurs in the US. Sure, some people could have a radical reduction in the frequency and severity of their migraine attacks with awareness, preventive medication, and lifestyle and behavioral changes. Many others, like me, strive tirelessly to improve their health to no avail. Chronic migraine, defined as 15 or more headache days a month, at least eight of which are migraine, has its grip on 2 percent of the world’s population. And that’s the bare minimum, some migraineurs have an attack every single day. In addition to the excruciatingly painful migraine days, every migraine also has a recovery day (or three) that can put alcohol hangovers to shame.

Migraine is a real neurological disease

Again, I do not want your pity or even your sympathy. I want you to have even the tiniest grasp that migraine is not a headache. That your brother isn’t just trying to get out of Sunday dinner. That your coworker isn’t taking the day off to go shopping. That your wife isn’t a whiner who doesn’t want to do housework. Migraine is a real, debilitating neurological disease that no amount of positive thinking can cure. In fact, there is no cure at all; modern medicine doesn’t even know the full extent of the causes of migraine.

Acknowledging migraine is not just a headache

In the US, June is National Migraine Awareness Month and in the UK, the first week of September is Migraine Awareness Week. I’ve been doing a lot this month to raise awareness, but I realized I’ve been preaching to the choir on migraine-focused blogs, websites and Facebook pages. So I’m writing this letter to all of those without migraine. Though you may not personally suffer from the illness, there’s no doubt you know someone who does. If this letter had touched you at all, please let them know that you understand migraine is not just a headache. They may brush you off — that’s what you learn to do when you have an illness that’s so often viewed as an excuse — but I guarantee they will take your words to heart. And I hope you will, too.

-Kerrie

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Migraine Research Foundation. Available at: http://www.migraineresearchfoundation.org/about-migraine.html-. Accessed June 2012.

Comments

  • JMM2
    6 months ago

    I like this article. It’s tough having chronic migraines. It’s ruined a lot of things in my life and turned me into someone I don’t even recognize anymore.

  • Wandathurber
    9 months ago

    This posting sounds just like my life as a kid. Could never make any noise because Mom always had migraines. Even my Dad spent a lot of time out in the garage fixing things. Now feel kind of ashamed that I didn’t understand till I became the same.

  • chellerich72
    10 months ago

    I am on day 19 of a migraine streak ranging from a 7 to a 9 on the pain scale. I have never had one this bad, last this long… and NONE of my medications are helping! My GP and Neurologist are both at a loss as to what to do now! I told my husband i just want to die. This is as bad as it has ever been in the 20 yrs ive had migraines!

  • donnamichelle
    11 months ago

    I keep “almost” sharing this, but then don’t because I just think everyone will think I’m throwing an excuse on the table. I love the article, it even educated me quite a bit – even though I’ve been migraining for over 10 years.

  • Gmatom
    11 months ago

    Thank you so much for this brave and beautiful article Kerrie. I sent it to all of my friends and family. I want them to know that I blow them off not because I don’t care but because I “can’t”. It amazing the amount of misunderstanding, stigma, and myth that surrounds this disease. You wouldn’t believe the number of doctors and health care professionals I’ve seen who didn’t have a clue. Keep posting. We are with you.

  • #purpleproject moderator
    11 months ago

    What a thoughtful response Gmatom!! Thank you for your feedback! <3
    Best,
    kelly

  • mizlilly
    11 months ago

    I’ve had chronic migraines for the last 20 years and it became much worse in intensity and frequency as entered menopause. I also had fibromyalgia. I tried multiple types of medications, pre-migraine medications, and even injections. About 5 years ago everything changed, while still in menopause, I went from 25 migraines days per month to one less intense migraine, at the most, no more fibromyalgia. I balanced my hormones with bioidentical progesterone, estrogen, and melatonin, take a comprehensive magnesium supplement Life Extension 500mg, 5000 mg Vitamin D, and 500mg turmeric. I eliminated artificial or damaging ingredients in my food and cosmetics, especially anything that said “fragrance”. I used the website from the Environmental Working Group (ewg.org) – which as good app that allows product QR scans. I’m still hoping to get rid of my one migraine day, as I believe it’s curable, the more the learn about it.

  • JMM2
    6 months ago

    Wow, I’m so happy for you! I’ve been struggling with fibromyalgia, and the docs think my migraines and fibro are related. I take the turmeric, a magnesium/zinc/calcium super combo have a hormone IUD, and vitamin D. (I’m already deficient in vitamin D because I live in New England.)
    Funny thing is, I’ve suffered from migraines in various streaks and strengths over the past 15 years, and the fibro was only diagnosed two years ago… not sure which came first- the chicken or the egg.
    I like that you mentioned fragrances- I am sensitive to them, so maybe I need to pull all of them from my soaps and such to see if there’s any difference. Thank you for your share!

  • mermadelove
    11 months ago

    @mizlilly I am SO glad to hear that you have hit upon things that work for you. I do have to say that I had a knee jerk defensive emotion come up when you said you felt the disease was curable. The disease is TREATABLE. (There’s a big difference). You can reduce or eliminate the signs and symptoms of it or a while 9or maybe forever if you are lucky/hit the right combination of things) but to say that it is curable if you do the right thing can be very damaging to those of us who have done everything you’ve done and NOT had your level of relief (like myself). I just wanted to let you know it’s not just a matter of trying hard enough to find the right magic combination of things. Good on you for finding a regimen that worked for you!

  • cash80221
    11 months ago

    Mermadelove, I agree with you. In my opinion if migraines were curable, someone would have hit on the “magic cure” for everyone. And I’m sure we “migrainers” all know, what works for one might not work for another. Just like triggers, everyone is different.

  • cash80221
    11 months ago

    Kerrie, I could have written your article. I have had daily chronic migraines for 20 years. I have had some level of migraine pain EVERY day, with 4-6 days every week requiring a “rescue” triptan of some type. Yes, I know the recommendation is a maximum of only twice a week for triptans. So do I want to die from triptan overuse or from cutting my head off from the pain?? That being said, I have started taking a “miracle” monthly preventative…..the new medication Aimovig. I took my first dose in early October. Following the first day of injection,I had NO MIGRAINES for the entire first week, and only 2 days during week 2. Then weeks 3 and 4 began to look more like my “normal” weeks. My neurologist, also a pain specialist, told me based on other patients’ experiences, Aimovig gradually builds in effectiveness. I took my 2nd dose Nov. 9th. As of today, almost 3 weeks later, i have needed a triptan only ONE day! And during those 2-1/2 weeks I was under SEVERE stress with my elderly mom falling, an ER visit, subsequent hospital stay, then 12 days of rehab. There is no doubt in my mind that Aimovig is working! Please read up on this and discuss with your doctor. Since I have needed 2-3 different types of rescue medication every month, my insurance didn’t fight the Aimovig prescription one bit. It will probably be cheaper for them in the long run. I forgot to mention I also have been getting Botox injections. So far, I have no reservations telling anyone to give Aimovig a try. Good luck!

  • Gmatom
    11 months ago

    I laughed so hard at your line about choosing between dying fron triptan overuse use or cutting off your head. Only a migrainuer would get it. I’m so glad Aimovig is working for you. I’m on my third month taking it and only a few days relief. I’m going to give it more time and not give up.

  • #purpleproject moderator
    11 months ago

    We love all the support in these threads!!!!
    Best
    Kelly

  • bspinks
    11 months ago

    I’ve posted before on here but no response. I’m a 51 year old 38 year migraine sufferer. Good times right? Anyway I have a daily migraine attack yes 24/7 365. Mine started age 13. I have every symptom mention in this article. Relationships have been difficult because as mentioned in the article people/partners don’t get it. My current regimen is crushed imitrex that I dissolve in hot water filter and spray up my nose. I also take amitriptyline daily along with fiorinol with codeine. Life’s better as an adult because as a child I was very much untreated. Anyway good luck sufferers. PS my doctor has told other patients about the homemade nasal spray and they’ve had some success.

  • #purpleproject moderator
    11 months ago

    Hi bspinks! Thank you for sharing what works for you!! I’ve never heard of using Imitrex in a nose spray.
    Kelly

  • darleneh
    11 months ago

    Although mine may not be as often and severe as yours I truly understand. I’ve been suffering for 12 years and asbyou have tried numerous medications. I don’t tell anyone when I have a headache anymore cuz it just seems to be a daily thing that nobody understands the severity and debilitating it can be. When you get a migraine it’s so scary because the pain and feeling in your whole body seems like there something more serious going on because you ask yourself how a headache can’t be this bad. All I can say right now is that I’ve put myself first and if I need to lay down, I do. If I stay home instead of going out, i do. I now do whatever it takes to make myself feel better.

    I hope and pray you get some relief and answers. I started the new medication Aimovig and it seems to be helping. I’m 4 months in. If that helps!

    God Bless and take care of yourself.

    Darleneh

  • donnamichelle
    11 months ago

    I don’t tell people when I have migraines or headaches anymore either. It’s starting to annoy myself with my constant repetitiveness. When I was a kid, my mom had lots of migraines, and it was such a drag, we could never have friends over, always had to be quiet, etc. Mom always had a headache, all you had to do was look at her and you know. I always said I would never be a migraine Mom, I didn’t want to be such a drag in my kids’ lives. Well, now I’m a migraine Mom. They often ask me if I have a headache, and I know it’s in my eyes, and they know 🙁

  • cash80221
    11 months ago

    Darleneh, I started Aimovig in early October and I know it’s working for me! I’m in my second month and so far this month, I have gone from 4-6 triptan days a week to only ONE day so far in 19 days! I hope we both continue to see improvement!

  • pam bitterman
    11 months ago

    I AM SO SORRY! I do not suffer to the extent that you do, but I recognize every symptom and every fear. And I cannot honestly not imagine my life so consumed by migraine. I hope you are finding every trial known to modernity, and that there is some relief out there for you somewhere, someday, soon….
    With great compassion, Pam

  • Randy
    11 months ago

    I would SO APPRECIATE permission to reprint this well written article to help further education of this condition. Would you pls consider? Thank you

  • Joanna Bodner moderator
    11 months ago

    Hi @randyburks, That is great to hear you think this article would be useful to print & that it would help further educate. Many members of our community have done the same & shared similar articles with their friends, coworkers, loved ones, etc., so by all means feel free to do so. Should you share anything electronically of course it needs to be referenced should the author’s name for some reason not be appearing.

  • Kittymama
    11 months ago

    Thank you Kerri, this letter may have come just in time for me to keep the part time job I can manage (usually) to work. Funny you mention chocolate as that is one of my known triggers and I avoid it completely. I may have to send this letter to a couple of my bosses. It sucks being an unreliable employee but working in a loud, bright and noisy restaurant and being nice to people is beyond me. The smells alone make me vomit. OK, done complaining. Thanks for all who contribute here, I rarely comment but reading this site does help to know I’m not alone.

  • Sophiasmom
    11 months ago

    how many of you out there have had a spinal tap to rule out intracranial hypertension? many neurologists won’t acknowledge that IIH can exist without papilledema, such that the absence of papilledema does not rule it out. In fact, the headache syndrome of IIHWOP can mimic that of migraine, and there is no way to rule it out without doing a spinal tap. Many of the migraine medications can treat intracranial pressure, further obscuring the situation. Notably Topamax.

  • bspinks
    11 months ago

    If a triptan helps it’s a migraine. Spinal taps hurt!!

  • cindyd
    2 years ago

    Thank you foe this article. Most of it sounds like it ckuld have been written by me. I feel like my boss understands at work to a point but it majes me feel like sometumes tbey are not sure od what is going on and I almost feel like they don’t beliwve me every single time. It makes me feel terrible to feel like I am being talked about behind my back because when I go back to worl I almost there is a heaviness in the air that is almost palpable…if that makes sense. It makes me so sad because I have worked hard all of my life…

  • Crowband
    2 years ago

    I am fortunate to only have the symptoms that you DON’T have. I am also fortunate to only have migraines every couple of months. I do agree that the extreme overuse of the word and the lack of respect for those that do experience it is disgusting. “I don’t get migraines often, but when I do, I want to shoot myself to get it over with.” My doctor that I consulted suffered from migraines and the best advice he gave me is: “Just accept it, don’t stress or fret. They might occur at inopportune times, but the more you let it control your life, the more the problem will only grow.” So far that is what I’ve done. Whatever brick walls this problem may throw at me, I’m ready to plow through them head on with a pillow in one hand and a Coca Cola in the other!
    P.S. Every medication I’ve been prescribed hasn’t done jack S**T

  • jwheeler
    3 years ago

    I have moved from a medium sized town to a tiny town but we are near a medium size and a large size cities. The new PCP I picked has sent me to two different neurologist. They both informed me that all headaches are migraines. But you do not need any meds for the pain. That will make it worse. Both wanted my med list was not a problem. But they looked at my list and just criticized it. Never asked why I was talking any meds. I had one just for migraines, I was told it did not matter that I had two broken ribs. You are not to ever take any pain medication. I also have fibromyalgia and other autoimmune disorders. These two doctors only criticized me snc my former doctors.

  • bspinks
    11 months ago

    The 2 doctors you spoke of are ignorant or misinformed about the disorder. Keep looking there are better doctors out there. My first question to a doctor is do you get migraines. If not I keep looking.

  • peacemom
    3 years ago

    I am so fortunate. I have docs who do listen. My primary care, neurologist, and psychiatrist are the best, most forgiving and team building physicians. I have been receiving Botox treatment for about 3 years. This has decreased my dysfunctional days due from migraines from 15 plus to average of 10. My need for narcotic shots went from monthly plus to average 6-10 weeks after Botox. My anxiety has decreased therefore so has necessaty for anxiety meds. I continue preventive medication, and abortive medications and coping skills. Yes I still have “headaches” most mornings upon waking, but they are migraines less days than more now. Thanks to three of the best doctors.

  • DonnaFA moderator
    3 years ago

    Hi Jwheeler, wow, that’s frustrating. Have you been able to connect with a doctor who hears you? If not, you may want to read Is It Time For a New Migraine Doctor? for help in connecting with specialists in your area. -All Best, Donna (Migraine.com team)

  • Suludo18
    3 years ago

    I agree with everything you said and I feel your pain. Just wanted to ask if you’ve considered the Daith piercing? I got one a couple of months ago and although I still have minor migraines, I have not had any debilitating ones since the piercing. This could be coincidental, just don’t know yet. There’s a lot of information online about this piercing but it wouldn’t hurt to try it. It hurt like hell, but some people say their’s didn’t hurt. Good luck to you!!

  • cash80221
    11 months ago

    I had daith piercings in both ears. While it reduced both the severity and frequency of my migraines for about 4 months, the frequency gradually picked back up. I do think the piercings have continued to blunt the actual pain factor to some degree. On the other hand, my brother, who also was having daily chronic migraines, had daith piercings in both of his ears. Since doing this 15 months ago, he has been about 90% migraine free. I will state, in all honesty, this route certainly isn’t pain free. And the daith piercings took MUCH longer to heal than my “normal” lobe piercings. I had one piercing done and then the second one done about 7 months later. The first daith piercing took about 8 months to heal. The second daith piercing was done in early March this year and still isn’t totally healed. Also FYI, it pretty much has to be done by a piercing specialist. In my area, that was in a tattoo/piercing shop.

  • peacemom
    3 years ago

    The Daith Has been tried by several I know. All with same outcome. Magical for 2-6 months then nothing.

  • cindyd
    3 years ago

    Great article. I have one now…going on three days in a row. People KNOW that I get them but I don’t think they understand how debilitating they are; I can understand why they feel this way because they can’t fully grasp the severity without experiencing them for themselves.

  • bobmac73
    3 years ago

    HI ! THANKS FOR THIS TOPIC ,THINK I’LL POST IT TO ALL CLOSE RELATIVES AND THOSE WHO LIVE NEAR ME ! ALSO BEING A MALE DOESN’T HELP ANY & DIAGNOSED W/ DEPRESSION FOR MANY YEARS ALONG WITH ANXIETY , FOR WHICH AFTER 10 YRS. STARTED TO ADJUST W/ MEDS… TO THE POINT OF POSSIBLE PART TIME WORK. WOW , …BUT THEN ONE ,MAYBE 2 OR 3 THESE ICE PICK HEADACHES CAME OUTS NOWHERE AND SINCE THEN THE ROAD TO ANOTHER MEDICAL NIGHTMARE TO GET RIGHT MEDS. TO JUST COPE FOR SOME HOURS B4 NEEDING MORE ! SOME THOUGHT IT WAS THE MILITARY DUTY AND THE VA DRS. WERE BAFFLED AS TO WHAT AND HOW TO DEAL ,SINCE RIGHT AFTER THAT I HAD A C3,4 DISC FUSION DUE TO UNEXPLAINED SHOOTING PAIN WHICH CONFUSED THE WHOLE MEDICAL BIG PICTURE . GOT THRU THAT DISCK FUSION, THE WORST RECOVERY EVER ! AND NOW ITS VISION,HEARING COGNITIVE PROBLEMS ALONG WITH PAIN FROM HEADCHES. THE DEPRESSION MEDS & ANXIETY MEDS. SEEM TO HOLD OFF MAJOR EFFECTS OF MENATL HEALTH , NOW ITS JUST THE UNEXPECTED DAYS OF ATTACKS THAT KEEPS ME TIED TO THE HOUSE AND FORGET ABOUT FRIEND SHIPS , WHICH TICKS ME OFF WHEN I HEAR WELL MEANING PEOPLE TALK OF SOCIAL CONNECTS IS GOOD , FACE TO FACE TYPE , I CAN’T MAKE IT TO CHURCH AFTER PLANNING GETTING READY FOR IT THE DAY BEFORE , AND WEATHER CHANGES DRIVES ME NUTS ..BUT THANKS BE TO THE WORD OF THE BIBLE AND LISTEN TO CONVERSATION ON INTERNET FOR PEOPLE OF FAITH WITH DISABILTIES HELPS SOME WHAT , PRAYER & MEDITATION ON PROMISES OF GOD & MUSICE THAT IS PLEASANT TOO ! THANKS BOB

  • Meggan Settle
    3 years ago

    Great article. I suffer migraines and am disabled because of it. I have several different kinds of migraines that started after I suffered a traumatic brain injury. I live in a small town and the drs here just think I’m seeking drugs and won’t give me meds. I’ve tried all the migraine meds, preventative meds,on the spot meds and nothing works for me except narcs. The drs just don’t believe me.

  • Suludo18
    3 years ago

    Narcotics is the only help for me. Most of the “migraine pills” just make me sick and I wish for death. I’ve also tried all the supplements and preventatives (don’t work for me). I’ve been accused of seeking drugs and “don’t be surprised if we don’t treat you the next time you come back.” Been there and done that. Frustrating, humiliating, and hurtful, I KNOW!!! I have to go to a pain specialist just to get Vicroprofen as my primary doctor won’t give it to me. This, of course, cost a lot more. Oh, well, whatcha gonna do? Had Botox twice, worked once. Way too painful for me to get 33 shots every three months. No thanks.

  • Joanna Bodner moderator
    3 years ago

    Hi there Meggan Settle,
    I am so sorry to hear that you are experiencing this with your doctor. Are there by chance any specialists in your area? I thought I would share this article in regards to communicating with your doctor – https://migraine.com/blog/communicating-doctor/. Here is also a directory for specialists in case you are interested to see if there are any close by – https://migraine.com/blog/looking-for-a-migraine-specialist/.

    Wishing you all the best and thank you for taking the time to comment. Please know that we are always here for support & always feel free to reach out!
    Take care,
    Joanna (Migraine.com Team)

  • katdan1026
    3 years ago

    Fantastic article, but as you say, you’re preaching to the choir. I have vestibular migraines that have vertigo as the leading symptom rather than head pain. I also get nausea, vomiting, head pressure and fullness, tinnitus,and flu-like body ache. My recovery can last for a day up to a week. They are chronic episodic, I’ll have them daily for months at a time then go into remission for months. Topamax and amitriptyline are have made symptoms slightly less lethal, but they are still debilitating when I’m in the middle of an attack. Only my husband, who has watched me heave into a bucket, and lay in bed crying because I had to bow out if yet another planed outting understands. I’ve even had a former employer tell me to “suck it up and get over it if you like your job” when I was going through non-remission phase and throwing up at work. Only someone who has been there can truly understand how debilitating this disease is.

  • DonnaFA moderator
    3 years ago

    Hi katdan1026, I’m sorry to hear that you’re struggling, but happy to hear that you have your husband’s strong support. We’re glad you’re here, and please know, we join your husband on your side. Don’t hesitate to reach out when you need a little extra support and understanding. -Warmly, Donna (Migraine.com team)

  • katdan1026
    3 years ago

    I have vestibular migraines that have vertigo as the leading symptom rather than head pain. I also get nausea, vomiting, head pressure and fullness, tinnitus,and flu-like body ache. My recovery can last for a day up to a week. They are chronic episodic, I’ll have them daily for months at a time then go into remission for months. Topamax and amitriptyline are have made symptoms slightly less lethal, but they are still debilitating when I’m in the middle of an attack. Only my husband, who has watched me heave into a bucket, and lay in bed crying because I had to bow out if yet another planed outting understands. I’ve even had a former employer tell me to “suck it up and get over it if you like your job” when I was going through non-remission phase and throwing up at work. Only someone who has been there can truly understand how debilitating this disease is.

  • melodykennedy@aol.com
    3 years ago

    Very well written!!! My insurance company only allows for 6 Imitrex a month and an alternative of 6 Rizatriptan a month… So according to them I should only be getting 6 migraines a month considering the dosage is 2 times a day!!! Seriously??? I, too, am one of the “daily” sufferers and have been for 25+ years!!! NSAIDS are out of the questions because of a condition I have… I also have Fibromyalgia along with several other autoimmune diseases… It’s just a matter of which pain I can handle at any given time sometimes…

  • Katyb
    3 years ago

    I can relate to you with the insurance company – mine pays for 9/month. Ridiculous! A pharmacist (and my doctor) said it’s because of the danger of taking more than 9/month. Ok, then. So, I found this great article from the doctor (neurologist) in NYC that created Migralex for his wife (nothing more than 500 mg of aspirin mixed with magnesium) and he said that extensive studies show that there is absolutely NO problem with taking Imitrex every single day IF that is your only source of help and everything else has failed. So, I showed it to MY neurologist and he tossed it in front of me saying it’s “bunk” – I told him that I’m going to continue to take it as needed. My family doctor will prescribe it – 30/month and I use a special discount card provided by the pharmacy for people that have to pay cash & no insurance. That’s the only way to get around it. I pay $29.92 for 10 tablets. Some days I need none. Others, I need several spaced apart. Who can determine each individual’s frequency? It’s idiotic at best! Everyone has other problems that may trigger migraine so 9/month would make me miss work, miss life, miss volunteering at my local cancer center, etc. I also take Fioricet for pain WITH the Imitrex and that *usually* aborts it. These “preventative” drugs are horrendous! I felt like a guinea pig – tried 3 of them and said, “no way.” They are mind-altering drugs. If I had epilepsy, I can see where you have to take them, but the side-effects are so brutal: depression, confusion, visual problems, etc. I’d rather have a migraine! Please Google the article by Dr. Alexander Mauskop – New York Headache Blog. His credentials are also online and very impressive. He has done 20 yrs. of research on daily use of triptans. He also says that if you have any coronary artery problems, you will not be able to take them like that, but in good health, you are not in danger. My doctor monitors me with cardiac tests and makes sure everything is ok. I’m 63 yrs. old and in good health. Been taking Imitrex since it was legal in the U.S. I seriously think it was a life-saver for me.

  • mrst53
    3 years ago

    I take a triptan and I also take Firional. It’s an older medication but you can take it on the alternate days. I don’t know what I would do without it.

  • Crystalrz4
    3 years ago

    OUTSTANDING PIECE!!! Thank you so much for putting into words what it is like for us, so that non-migraineurs can understand. I am one of the “daily” ones. My sister and I are 4th generation migraineurs on both of our family, it has carried down to our children, and now to my granddaughter who is 6yrs.
    I certainly hope there will be more answers and less stigma for her and her generation regarding this disease.

  • debwilton
    4 years ago

    Hi! I share your posts with my husband and others. I’m a pastor’s wife with chronic migraines, fibromyalgia, and foot pain that is so bad that after 30 min. I’m desperately looking for a place to sit.
    My mom, who had migraines but I don’t think she recognized them as such, asks me if I’ve said, “I accept your healing.”, to God. I told her God isn’t waiting for me to say the right words, push the right buttons!
    My brother is into natural remedies, so he looks down on me.
    I feel ostracized by my family.
    My husband is wonderful though! He has had migraines in the past caused by drinking way too much caffeine. Thank God, he was able to find an answer that worked for him! He doesn’t expect anything from me and is very supportive of me.
    Our church, that we’ve been at for 23yrs. and before my migraines began, has been VERY understanding of the fact that sometimes I’m just not there or, like last Sunday, I sit on the floor by the register, where it’s nice and cool.
    I miss my family though. They live far from me but it’s still a loss.

  • Lori T
    4 years ago

    I’be many nauseous days filled with dry heaves. It never occurred to me to take Imitrex because of no head pain. Thanks for sharing this, I will definitely try it next time

  • 50f9i0
    4 years ago

    i think :David-Wynn: Miller. might be able to help , he says migraines sometimes caused my pressure.

    he will probably be able to help people if you want to email him: dwmlawpro@aol.com

    he can answer all your questions most likely.

    thank you and all the best here ! : )

  • ultbit
    4 years ago

    I was also told that I have White matter disease and it is a thing that goes with migranes
    http://www.neuropt.org/docs/vsig-english-pt-fact-sheets/white-matter-disease.pdf?sfvrsn=2

  • ultbit
    4 years ago

    thank you I have these headaches everyday and people look at me funny when I say I have a headache and they tell me that it is ok and get over it but sometimes I want people to understand and let me have the time to get better so sometimes I just pretend I am ok but it is so hard to do because it is so much simpler thank you so much

  • M. Gill
    5 years ago

    I definitely think this message is important, and while I understand trying to distinguish between migraine and everyday headaches that most people don’t find difficult to deal with, I still find drawing a line between migraine and headaches problematic.

    I, personally, suffer from New Daily Persistent Headache (NDPH), a 24/7 headache that is refractory and can last for decades. What this means for me, personally, is that I have had a headache every minute of every day for nearly 6.5 years. Because my headaches are migrainous in nature, I was misdiagnosed with intractable migraine for nearly six years.

    However, there are others with NDPH who do not experience the nausea, light- and sound-sensitivities, and dizziness that I do. Pain, fatigue, confusion, forgetfulness, emotional roller-coaster rides, and other things I’m probably forgetting are universal, though. Other patients, however, have additional issues I don’t experience because their pain is different than mine.

    These are all just surface details–I could say more about how this headache has affected my life on personal, educational, and professional levels. My point is: not every headache is benign and easy to manage–they can be as debilitating and destructive as migraine, even if they don’t have migrainous features.

  • Kerrie Smyres moderator author
    4 years ago

    I agree. The regular headache that the majority of the population experiences is different from the headaches of any type of headache disorder. To me, the distinction is made in the inclusion of the word “disorder,” but you’ve shown me that’s not as clear as I thought it was. I’ll keep your thoughts in mind when I write about this in the future.

    Take care,
    Kerrie

  • Edward JC
    5 years ago

    Thank you for that. I’m sure we’ve all been met with the “yeah, whatever” attitude if we were unable to meet an obligation, like work, due to a killer M. If I could I’d invite them to come to my house and watch me dry-heaving for hours.

    I know everybody has different triggers, and no two M sufferers are alike, but two years ago I cut out Aspartame completely. I still get M attacks, and some of them are pretty bad, and I still use up my Imitrex allotment almost every month, but I haven’t had to go to the ER since. Nor have I had the extreme nausea/vomiting since I quit. Just FWIW.

  • Diane Dana
    5 years ago

    Sometimes I forget to look at the BIG picture of migraines. I am learning that many of my migraines are abdominal migraines. The day before Thanksgiving this week, I woke up nauseous and thought I may be coming down with a stomach virus. NO HEAD PAIN. All day I popped odansetrons and powered through it. After arriving at our destination and cooking everyone supper which made me even more nauseated, we sat down to eat. As I was trying to breathe in the smells and avoided looking at the food a light bulb went off in my head….migraine, even without the pain. I took one of my hoarded, precious triptans (you know what I mean….the expense and wanting to make “sure” it is a migraine before you take one of the monthly nine allotted to you by the insurance company). An hour later I was completely normal, no nausea, etc. I was finally able to enjoy my family. One of them even commented that I looked like I had gotten a second wind. Migraines affect SOOOOOOOO many different parts of your body. I was grateful that I had no head pain, but I have to get better at associating all the other symptoms. As I learn more, my husband is helping by identifying triggers and symptoms to help me. I have a lot of abdominal migraines. Now to turn loose of some of those triptans on a more timely basis! I guess I just never thought about trying one when I didn’t have the dreaded head splitting pain. Thank you, Kerrie, for helping to educate us. Looking back on my life, I realize now that as a child I suffered abdominal migraines, frequently. My first head splitting migraine occurred when I was 23. I didn’t find a specialist until I was 56 and then only because my daughter was suffering and started going. She convinced me to go. My family doctor gave me a pain killer and I kept trying to tell him that I needed MIGRAINE meds. Pain Killers do not work for me. He never understood.

  • Edward JC
    5 years ago

    Glad I’m not the only one who debates taking the Imitrex so I don’t come up short at the end of the month. Seems there’s about a half-hour window between knowing it’s a migraine and having it settle, in which case it’s too late. Sometimes that window is much smaller, too.

    I’m prescribed Vicodin for an unrelated condition. They are, as everyone here knows I’m sure, utterly useless in relieving the pain, but if you double-dose they might knock you out so you’re unconscious through the worst of it. My doctor even gave his consent for that (he gets them, too). As long as you can keep them down, that is.

  • Shea
    5 years ago

    >>I took one of my hoarded, precious triptans (you know what I mean….the expense and wanting to make “sure” it is a migraine before you take one of the monthly nine allotted to you by the insurance company)

    This! My husband is always encouraging me to “just take the pill” while I dither back and forth about whether it’s “worth it.”

  • Diane Dana
    5 years ago

    Lol…should be trying to NOT breathe in the smells.

  • ShellyeDMB117
    6 years ago

    Kerrie-Thank you for this. People just don’t seem to understand!

  • marilynberger-kanes
    7 years ago

    So well said. Thank you for finding the right words that fail so many of us when trying to explain this. They are evil.

  • doreenpayne
    7 years ago

    thanks for this open letter. I get migraines and Lily (my 12 yr old daughter) has them too. she has missed a lot of school because of them. going to the pediatrician on 2 weeks to see if he can help. she is on preventers but they are not helping much. she has missed school this week from it. some of my friends say Lily is making it up – they don’t get migraines – and I told them they are stupid. she would love to be a school instead home in pain, etc.

  • Nancy Harris Bonk moderator
    7 years ago

    Hi doreenpayne,
    I’m sorry to hear your daughter is suffering right now. And yes, some people can be very insensitive when it comes to migraine. If she could take two Tylenol and make it go away, she would!

    We have some information on children and migraines you may find helpful in this link; https://migraine.com/blog/yes-kids-can-have-migraines/

  • guenevierewolven
    7 years ago

    Well said. Thank you for posting this.

  • AmandaTaylor
    7 years ago

    I’ve lost count of how many times I’ve ended up in the ER with a migraine only to have a doctor berate me for several hours trying to convince me that its not a migraine. I’ve had migraines since I was 2 years old. I’m now 31 years old. I have seasons of a daily migraine and other season where I can go a month or two without. I still haven’t found a doctor in my area and will be looking for a chronic migraine specialist through this website. Thanks for sharing your story.

  • Lisa
    7 years ago

    You. Are a rockstar.
    Thank you. From the bottom of my heart, my 11th month on disability and the day I was just terminated from my job where I was the top performer at my position. I earned my company over $3m and they terminated me 1 month before I am due to finally get in with a specialist I have been waiting 3 months to see, and called it a voluntary resignation. All over a silly headache, right? Thank you, Kerrie, for getting it so right.

  • janetarcuri-suprise
    7 years ago

    This is one of those letters that should be posted everywhere. My ex-husband never understood, he thought I was making it all up to get out of going to work, clean, or cook him dinner. I wishhe could have had one for just one hour to know the feeling of a full blown migraine. I still feel guilty calling out of work when I have a bad one. I do get lighter versions more ofter these day but now thatsummer heat is here so is my pain….

  • kathy-phelan-delaurodelauro
    7 years ago

    Great article! You have said it all. Luckily I have had relief since May….but I am still and always will be a migrainuer….my husband is an R.N. but did not really get it till he had one! Understands now! Only have had four migraines since May. My work kinda understands but FMLA covers me. Wishing you better days..I so understand….I was in horrible cluster period…up to seven a day! It was exhausting. I have migraines with and without aura and cluster and occipital neuralgia. Lucky Me!!!

  • Stephanie
    7 years ago

    This brought tears to my eyes through the parts about taking days off work and so on and so forth. I posted this on Facebook for those of my friends and family members that have never had migraines so they could read what it is I go through on my days when I am suffering. Thank you thank you thank you for posting this.

    I think it’s unfortunate that even a lot of health care professionals don’t understand it. I was in the ER on Monday and almost went back today because I couldn’t stand the pain. They just don’t get it either though. The ER Dr. was baffled at how I “functioned” with a migraine every day.

    I had a conversation with one of my brothers the other day through text and a lot of things you stated in here I told him and he wasn’t aware of, so I helped him understand things a little bit more that day. Once again, thank you for this.

  • Janet
    7 years ago

    Thank you Kerrie…and I did said this to my children, husband ( who lived with this their entire lives since I have been a migraine sufferer for 35 years) and 3 siblings…it’s not new news, but every so often I send some new article to remind them what is going on in the outside world and migraines. Since both my son and daughter suffer from migraines, they understand…hopefully as they grow older the migraines don’t become more frequent as they did over the years for me. I, like you Kerrie, suffer daily…and wonder what it would be like to have a headache free day. I have been told “you are the worst case I’ve ever seen by more than one doc over the years. I knw that can’t be the case. My closest friend and fellow migraine suffer rook her life last February because her husband couldn’t stand her migraines anymore and divorced her. She couldn’t live without him and the pain. She was 46 god bless you Kerrie. You are on my prayer list.
    Janet Jones las vegas nv

  • marlenerossman
    7 years ago

    I suffer from intractable migraines too. I have suffered for so long, that I do not remember what it is like to have a normal life.

    My joy in life has been taken away from me and all I have is the hope that I will not have a migraine for a day or two. I have taken 15 different medications, none of which helped even a little.The only thing that helps is the abortives–triptans.
    I have seen 10 doctors and had three Radiofrequency ablations of my C2,3 and 4. Nothing has helped.

    I now take Sumavel injections and have a little kit (like a junkie) that I shoot up from. The shots are taser like and hurt terribly, but nothing compared to the migraine.

    Thank you for writing this, Kerrie!

  • Ellen.S
    7 years ago

    Just like my other sisters out there, well done! I almost emailed this to every person I know, but I have said this in person or on the phone so many times to no avail. People often think that “their” friend is unique and just mcuh to involved with their symptoms of “a headache”. It is difficult to get past hours and hours of pain and discomfort so often when it changes your life style so much. I have had migraines for 25 years and also have found that I get them more frequently. I have tried every diet, herb and life style change and nothing has helped.

  • Miss Kim
    7 years ago

    Where do I begin but to say “Thank You” as I write through my tears. I have always felt alone in my struggle with my chronic migraines to the point I feel people view me as if I’m doing drugs but I am not. It’s what the migraine is doing to me. I’ve had migraines for over 25 years that have become progressively worse rather than better. I now have them not only everyday, but I get them 24 hours back-to-back for 4 days in a row on top of everything else. I can’t miss work or go on disability. I’ve tried every medication, most of which I’m allergic to, and tried acupuncture to no avail. Try being a singer where “the show must go on” and you have to play with lights in your eyes and drums pounding behind you. That wasn’t the bad part. It was when we took a break…the so called quietness. I agree, no matter how much you try to explain to another person how you want to put your head through a wall to make the pain go away, they just can’t understand it–and it really isn’t their fault. But, they need to understand. Sometimes I wish they could feel it for just one day so they would understand. I now know there are others like me and can’t believe the feeling of relief I have right now…no, not that we are all sufferers but that since we are, we can all understand.

  • laalaa81
    7 years ago

    Kudos Kerry for putting into words what I could not. After reading this article I showed it to my brothers who don’t suffer but care for me during really bad episodes and they think this says it all. My boyfriend doesn’t “get it” and often becomes frustrated at the limits that this condition puts on me. Like you I suffer around 28 migraine days per month. Your letter is what I have been trying to get through to him for the past year. So from all of us that just can’t find the words . . . heartfelt thanks x x x

  • kyange
    7 years ago

    This brought tears to my eyes…you speak for so many of us…thank you. I know this wasn’t easy….

  • Cindi
    7 years ago

    Very well written, Kerrie. I have chronic migraines and have most of my life. My family and friends “get it” but not my coworkers, who have to fill in for me when I’m not there. I’ll admit I wish I could trade days with them to give them a better appreciation of my journey, but I also understand their point of view when days are full and now “fuller” because of my being absent. I hope your words reach someone who needs a better understanding of where we are and changes their view.

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