What Not to Say to Someone with Chronic Migraine: A Note on “Prevention”

What Not to Say to Someone with Chronic Migraine: A Note on “Prevention”

I recently attended a coaching workshop for health and wellness coaches. The women I had the privilege to meet while there overflow with optimism and sincerity. They are helpers, encouragers, and supporters. As both a group and as individuals, they want nothing more than to nurture and champion the people they meet to lead healthy and full lives. I thoroughly appreciate this, and them, as I too want everyone I know and meet to live as joyfully and completely as possible.

I found myself discouraged, then, in the support these women may be offering people—at least people with chronic diseases—when one of the leaders said something that’s on my list of number one things you don’t say to someone with chronic migraine: “Migraines can be prevented, you know.”

The blame game

She went on talking when no one responded, undeterred in her support of clean eating and lifestyle change. And, while I fully understand the value of those changes—I wrote a book featuring many of them, after all—I took, and take, issue with the word “prevent.”

Migraine stigma is a real thing. (Many of us here at Migraine.com have written about it at one time or another. For more, take a look at these great pieces by Kerrie, Katie, and Anna.) The term “prevention” used in the context this woman used it not only displays an ignorance of the genetic factors of the disease but also implies culpability on the part of the person living with migraine:


If we would just eat the “right way,” we wouldn’t get migraines. If we would just exercise “enough,” or avoid certain food or situations, or meditate more, or drink more water, we wouldn’t get migraines. If we just did something, we’d feel better.

Basically, she implied, whether she meant to or not, that if we had just cared enough about our health in the first place, we wouldn’t be suffering now. And, if we haven’t “fixed” our problem yet, then we must not care enough about it now either.

In this context, the disease is our fault. That’s what “prevention” means in the way this (well meaning) woman used it. But that isn’t how migraine disease works.

Remembering the science

You don’t prevent migraine disease from existing any more than you prevent bipolar or Huntington’s disease. There may be, at some point, an intervention developed that could prevent the disease from presenting, but we certainly don’t have that now. What we can do, what we all try to do, is prevent the attacks. Even that, however, is not easily done.

Prevention for those of us with chronic migraine disease means doing everything we can to experience fewer, shorter, and less intense attacks. Prevention isn’t a complete cessation of symptoms. There is no cure.

We didn’t create migraine disease by not eating the right foods or stressing too much, and we can’t fix the disease by eating better or stressing less. It isn’t a disease that can be “prevented.” If it were, the millions of us who live with it on a regular basis would have signed up for that treatment a long time ago. I expect someone working in the health field, especially in client and patient support, to know this. I’m hoping, as migraine education and awareness becomes more widespread, that soon they all will.

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.

Comments

View Comments (66)
  • pttennessee
    4 months ago

    If brain surgeons, PHDs, chemist, can’t cure migraines, what makes anyone else think they can?! Geezzz ….I would be a billionaire if I could cure them! At the very least- not suffer myself from them!

  • JPaula
    4 months ago

    I totally agree with the points that you have made and I actually did not discuss my migraines with most people because I didn’t want their feedback.
    I did on the other hand do an elimination diet, have my brain tested, my vision and my bite and started meditating and try to get enough sleep – if I don’t have a migraine. I have to say that none of the above changed much.
    A few things have worked for me. Magnesium, B2, and classical homeopathy.

  • Joann
    4 months ago

    While I completely, totally agree with you and this entire article, please clear up the fact that there are still “preventatives” out there that are for other ailments but used to “prevent” migraines as well. None of which worked for me. I think you should explain that if you can. Just because I’m sure someone else has thought of it as well. I’m starting the newest CGRP therapy very soon. That’s my only hope, Obi Wan.

  • kimmersutphin
    7 months ago

    I have tried everything. I get told things like, i get them too just take excedrin, I think you really don’t have a migraine. I am on disability because of them. Had to leave my ideal career if taking an excedrin would do it I would be in heaven and not giving myself shots spraying med in nose and botox and infusions.

  • Kathy
    7 months ago

    Amen to that!!!

  • joyrobbedbypain
    7 months ago

    I can relate very well to your article. So many “well meaning” people always have something “have you tried this”. When I answer yes, some of them look at me like I am not being truthful. My migraines started when I was 41 (2003). I also thought my job contributed by creating stress. Took short term disability twice (3 months each) and nothing changed. 15 years later nothing has changed. I also feel older than my years when I have a migraine and the day after (I call it a migraine hangover). It is very frustrating!!

  • Sarah Hackley author
    6 months ago

    I’m sorry to hear you’re struggling. It’s a tough disease to live with, but I’m grateful that we have people we can share with (like on this website) who understand. I certainly share in your frustration. I’m hoping you feel well today!

  • ShakingthePainAway
    8 months ago

    Sarah,
    I want to copy sections of this article and blow them up and paste them all over my house!! After spending the past 10 days in the hospital and hearing even the health professionals refer to migraine as a “headache”, I wanted to scream (although it was hurting too much to scream) at them, IT IS A MIGRAINE!! Thanks!

    Gretchen Church
    MIgraine.com and Parkinsonsdisease.net Contributor

  • Sarah Hackley author
    6 months ago

    Thanks for letting me know it struck a cord. I get so frustrated when health professionals use the term “headache.” My new pain doctor used that word recently, and I left his office feeling quite discouraged. You’d think they’d know better. 😉

  • JPaula
    4 months ago

    Strangely, I called mine headaches until I went to a neurologist and she said “you have migraines”. I felt supported when she said that.

  • elfk
    9 months ago

    I may just scream if one more person tells me I should try their diet because it will make my migraines go away….

  • Sarah Hackley author
    9 months ago

    I feel your frustration. That’s a big irritation for me, too. Thank you for reading and commenting!

  • ScottReno
    11 months ago

    Even people who get migraines can have the attitude of “migraines can be prevented.”

    I mentioned my latest migraine, a short one of 12 hours, to my mom, a retired nurse. I’m not drinking enough water, she said. I tried explain I drink plenty of water. She said I’m not and when she gets a migraine she drinks a lot of water and maybe some ginger ale.

    I love my mom dearly, which is why I didn’t mention she also takes a pill the doctor prescribed for her and crawls in bed for a few hours.

  • Sarah Hackley author
    9 months ago

    It’s always hard to navigate statements when the people saying things are ones who love us. I try to remind myself that they have good intentions. That doesn’t always appease my frustrations, though. Good luck! Thank you for reading and commenting.

  • Julie
    11 months ago

    Health and wellness coaching sounds like an intriguing chronic migraine career option. How well is it working for you? I see there are online certification programs, but is it possible to work soley online as well? Don’t wanna bother with training if I can’t do the job.
    Also, great article. And too true – the blame game is way too common.

  • Sarah Hackley author
    11 months ago

    I’m sorry, Julie, but I don’t have the answers to your questions. I work mostly as a writing coach and editor rather than a wellness coach. However, this website may provide some answers: https://ichwc.org. I hope that helps!

  • StefD
    1 year ago

    I have to say I can’t help but giggle a bit as I lay here undergoing my nightly Ceflay session. I had my first migraine at age 10 and the Family doc immediately started me on Tylenol w/codine. I had a standing RX for this until he retired when I was 16. By that time the migraines had abated and when I did get one it was mild compared to now. They came back with a vengeance 20 yrs ago and then a few years later I developed a brain tumor— no correlation between the two. Imagine my fun now. The piece of skull they removed to access my brain didn’t heal quite right, shocking I know. So now as the barometric pressure shifts up/down the right side of my head either bows out or in depending. I’m lucky in that I’ve managed to put a great treatment team together consisting of a Neurologist, Pain Mgmt Doc, and an acupuncturist. I still live every day at least at a “normies” pain level 2 and I still work full time. As I pointed out to my manager during my “Performance Review” I have a recognized disability but should not have to explain every time my pain levels are between 4-7 to coworkers that I’m having a rough day. You all know what I mean. Anyone paying any attention would know because it’s written all over you face and how you move no matter how much we try and fake it. At least I very rarely get “did you know…..have you tried….” from those that know me.

  • Cerys
    1 year ago

    I hope you were able to influence that presenter directly at the conference.

    Sometimes I learn things from the “have you tried” question, so for me it’s all about whether the person is genuinely compassionate, sincere, and open. A lot of times people aren’t really open to hearing that what they propose isn’t helpful or hasn’t worked. This is true for many “wellness coaches” & some doctors.

    To me the opposite of openness is being dogmatic – like the religious fanatic who gave me a book that cross-referenced illness with sin so I could repent properly and be healed! “Clean eating” advocates drive me nuts with their simplistic and insistent bully-pulpit ramblings. I’m not sure how many others with migraine also have the comorbidity of functional GI issues. But telling me I need to eat salad is a sure sign of ignorance – I once blindly tried following the get-more-fiber and flax-seed advice. I didn’t end up in the ER – I ended up in the OR! And, thanks to a “rare” reaction, was left with permanent damage.

    At the end of the day, I think mindful sensitivity (and not presumption) is key. There may be some shared aspects, but we are each on a uniquely complex and personal journey.

  • MidrinMan
    1 year ago

    Many years ago, I was given a prescription for lorazepam and sent to the psychologist as my doctor decided I was having panic attacks. A year later, a couple of physical therapists, a few x-rays, a cat scan, a full psyche eval, and finally……….. an MRI revealed a disc in my neck pressing on my spinal chord was causing my muscles to spasm in my neck and shoulder (among other things).

    After the lamenectomy I no longer needed the the lorazepam. I did however find relief with lyrica, and a bevy of other pharmaceuticals. And yoga. And hot tubs. And swimming pools. As I kept telling my doctors over and over and over and over again, it’s not in my head, it’s in my head, and my neck, and my shoulder………..

    I was getting frustrated with the craptastic level of care and started speaking my mind, loudly. Things like “you guys are a cluster $u#c* and other colorful things you say when you have level 10 pain. They got even with me and diagnosed me with a mood disorder.

    Angry equals moody. Gimme the good drugs…. NOW!!!!

    When we finally got my pain down to manageable levels, my mood improved.
    Imagine that. My blood pressure improved also.

    My migraines started around age 8. My grandfather had them, my mother gets them, my sister gets them, my adult child gets them. It’s hereditary for us.

    Migraines are part of our family culture.

  • Carl
    1 year ago

    Hey Sarah, thank you for another great insight. I agree with you in that the woman from the coaching workshop was inappropriate.

    Do you think there’s a balance to be found between patient blame and giving in to migraine because it’s a complex biological disease?

    If I resign to migraine and make no effort in good sleep hygiene, exercise, diet or stress management then would it be surprising if my condition deteriorated over time? Studies suggest efficacy of such behavioral and lifestyle interventions for migraine.

    At the same time, even with all the right lifestyle and behavioral changes mentioned above, some patients may not improve or still get worse. As we all know, there is no cure.

    Therefore the message I believe is about patient empowerment through education. Knowing that there isn’t a cure, but that these lifestyle changes can help. In fact, not only are they good for migraine, they are just good for you overall, in most cases they facilitate a happier and longer life.

    So yes they should be encouraged, but they are certainly not the reason why someone has migraine and another does not.

    -Carl

  • Sarah Hackley author
    1 year ago

    Carl, I do agree that patient education and empowerment are important. We each should learn about our disease and then use trial and error to see which of the general guidelines work for us to manage our symptoms. However, that’s not the same thing as blaming ourselves for the disease or even individual attacks. Unfortunately, stigma still keeps many migraine patients feeling ashamed and guilty about their attacks, and I want to make sure that I help to fight that. Thank you for reading and commenting!

  • Jan Flow
    1 year ago

    Words are undoubtedly powerful. Particularly so when we are in a place of fear and suffering. How would it feel if we swapped ‘prevent migraine’ with all its unwanted baggage for reduce your vulnerability to a migraine attack? Opening up space for ourselves; space for the possibility where we no longer have to be controlled by migraine. That we, not this condition, are in the driving seat of our lives.

    Reflecting on our habits and lifestyle changes is one meaningful part of that. As is understanding how & why our brains make pain and learning how we can step in and change that thanks to the wonderful plasticity of our brains. It isn’t easy. It’ll look different for each and every one of us. But, most importantly it isn’t about blame; it’s about biology.

    This has been my experience. And, yes those of my clients too, for full disclosure. Personally, I only wish someone had had this conversation with me 30+ years ago so I could have reduced the amount of suffering and pain I had to endure.

    As for the clean eating brigade? Migraine is enough about restrictions as it without adding unnecessary ones of having to eat and live like a cave dweller. Food is for enjoyment and for love. It’s not something to live in fear of.

  • Sarah Hackley author
    1 year ago

    Hi, Jan! Thank you for commenting. I absolutely agree that that is a better way to approach it. I completely support self-empowerment and patient education; those are the guiding themes behind all of my work. We all can do the work to live our best lives, but that is going to look and feel differently to each of us. I appreciate your attitude!

  • KarenE
    1 year ago

    I had my first migraine at the age of 10, and they continued sporadically throughout my adult life. Eleven years ago, I was diagnosed with chronic migraines because I had daily migraines on a 5 to 7 pain scale, and 2-3 times a week I had a pain level of 10. At that point, I went on Social Security disability.

    I still have daily migraines, and I always have a pain level of 3 or higher. Migraines at lower pain levels are my “normal”. I have learned to function with them, so I can do things like grocery shopping, dining out, and meeting friends. More often than not, I am unable to follow through with plans because something has caused my “normal” migraine to ramp up.

    After all these years of people saying, “But you look so good!”, “It’s just a headache”, “”You should try _______”,”I know someone who used it and her migraines are cured”, sometimes I just can’t contain my sarcasm. Someone who is always giving me her unasked-for opinion and advice said, “You have to go to my chiropractor. He says he can cure migraines after 3 sessions with him.” After I stopped laughing, I said, “First of all, there is no CURE for migraine. Second, if that chiropractor does anything that helps migraineurs, his name would be known to every neurologist and migraine sufferer in the world. She didn’t say much after that.

    Then, just a few days ago, I walked into one of my favorite retail stores and as I did, the lady behind the counter, in a very loud voice that could be heard throughout the store, “Someone must be having a bad day. You have a huge frown on your face.” I responded, just as loudly, “That’s because from the time I walked from my car to your front door, I got a horrible migraine behind my eyes, and I was grimacing from pain. Thank you so much for making me the center of attention.” Sometimes people’s ignorance gets to me. I try to be gracious, but I’m not always successful.

  • Sarah Hackley author
    1 year ago

    Hi, Karen. Thank you for sharing. I applaud your bravery and self-advocacy. It isn’t easy to speak up for ourselves sometimes.

  • lindaann
    1 year ago

    As my physician (and I emphasize the physician) friend said to me, “oh don’t worry, your migraines will burn themselves out”. Yeah, and me in the process!

  • Sarah Hackley author
    1 year ago

    That’s a new one! I hadn’t heard that one before, and I can’t imagine what you must have said back to your friend. I imagine I wouldn’t have been able to keep back a laugh. Thank you for sharing.

  • pigen51
    1 year ago

    You all forgot my very personal favorite. After 3 years of trying, I was finally able to get SS Disability for chronic daily migraines. What do you think I get now? “I thought you got disability. You don’t still get migraines now, do you?”

    Like I am not working now, even the part time job I held for the last two years, so I should be cured. I don’t know whether to smack my head against the wall, or theirs.

    Sometimes I even get this attitude from my family, who should know better. I have a bad migraine for 2 days, and finally go to the ER or Medicenter to get a shot. That usually takes care of the headache I have. A day or two later, I often can get another, since I have near daily migraines. And I get the, ” You just got a shot, you shouldn’t have a migraine again.” If I only got migraines once in awhile, I would still be working at the job that I held for 35 years, making a very decent living, instead of relying upon SSD for my living. As others have stated, sorry for the rant, I live in Michigan, and the weather right now is so changing, that I have had a 6 or 7 scale migraine for over a week and a half. I don’t dare go to the Medicenter, since I was just there 2 weeks ago, and as you all know, one doesn’t want to get the reputation of a drug seeker, or you will never get help from any single ER or Medicenter in the area.

  • joyrobbedbypain
    7 months ago

    I am on SSD because of chronic migraines. I completely understand the comments you receive. I get the same responses from friends and family…we try not to let the pain show on our face, so when they look at us we look “fine”.If it wasn’t necessary to live on an SSD budget, we wouldn’t. It would be great to work again and get a better paycheck. I live in GA and 8 yrs ago the changing of seasons started affecting me. The pollen (which gets very bad here) was the cause. The barometer also affects my migraines. It is very frustrating when my migraine sends me to the ER because I know what will and will not work, but when I let the nurse/doctor know, I sometimes get that ‘look’. Thank you for sharing…I understand completely.

  • Sarah Hackley author
    1 year ago

    I’m sorry you’re suffering right now. I live in central Texas, and our weather is always changing at this time of year, often moving 30-40 degrees a day. I feel you! I hope you get some relief soon once winter settles in and the weather calms down.

  • Newdancerco
    1 year ago

    Can i just add; “it will get better” to your list.this genwrally comes from the best of places, but so often. If im in enough pain that you can tell., then no, it isnt going to get better soon/with patience/ via prayers/,etc. The records indicate that, long term, it will in fact continuw to worsen until i an either committed to a home or i end it permanently. So unless you are in this pair of shoes, dont pretend. I know you are just looking for a way to feel comfortable, even at the expense of throwing the discomfort of determining how to handle it into my (already overwhelmed) lap.

  • Newdancerco
    1 year ago

    Apologies for the grammar and punctuation errors. Migraine hell and typing dont mix

  • Sarah Hackley author
    1 year ago

    I have the worst time typing during attacks, too. I’ve seriously considered adding a “migraine typo” thing to the bottom of my emails, like some people do for messages sent by iPhone or something, but I haven’t done it, yet. Thank you for sharing.

  • shannonc512
    1 year ago

    Thank you a million times for this! I blame myself constantly and have a permanent guilt cloud hanging over me because of this. I don’t exercise nearly enough and am always beating myself up. I eat things that I know are potential triggers because I still haven’t figured out my triggers. I’m a loser, it’s all my fault, I’m so weak, etc etc. I’m depressed and anxious pretty much every day. This past year I’ve felt like I’m really almost at the point of a breakdown. This article made me feel a bit better. I’m going to keep this handy to read during those hard moments. Thank you!!!

  • PegB
    1 year ago

    Your blame words hit me hard. I am angry for you. Since recently beginning to follow a migrainers site, I have kind of realized my progression in MANAGING migraines. You are absolutely not to blame for your situation! For me, once I quit fighting for my old life, my rewarding challenging job, quit worrying about daily letting people down, let go of being super mom, super teacher. My new normal involved figuring out which thing I would do to increase the quality of my life during the one hour a day (on most good days) I was able to do an out of the home thing. I lost most friends. Not many get-it. Why would you be able to deliver meals to the elderly and not go for coffee with me? Life became a cost- benefit analysis and blessedly, I have a husband who more than understands.One day he said to me “ how did it become such a value in our society to run around being busy all the time, talk about how busy we are? Why is being busy morally better than staying home to take care of ourselves?” I hope my thoughts help you. I still suffer daily but lots of things got better when somehow I got on a train toward acceptance and achieving balance…my own balance, that needs to only involve all the things that help me, are legal, and don’t hurt others….they don’t need anybody’s approval. I had cancer back in the 90s (which, all possible tx thrown at me was a piece of cake compared to learning to deal with chronic pain) my treatment was in the time of the KublerRoss books, (I was given 6 of them by loving friends) and the prevailing thought was that you had to have the positive thinking. It always made me furious that for those that the cancer treatment wasn’t successful the implication was that they did not have the proper positive thinking! I think that’s why your guilt speak really speaks to me. It’s just WRONG.

  • Sarah Hackley author
    1 year ago

    I am so glad it helped you and brought you comfort! Thank you for sharing.

  • TBI and still going
    1 year ago

    I just read all of the comments and we are all in the same crapy painful boat! Hang in there everyone we all have each other on this website! Final pet peeve my friend had the diathe piercing and it “cured” her migraines! I wanted to say then she didn’t truly suffer from migraines! As someone who has had them since I was a child as well as seizures and mine are triggered by my monthly cycle I guarantee u they can’t be cured or mine would have been helped by now! On top of it I was in a serious car accident comin back from Walt Disney world with my entire family. My son and I were both knocked out! That made my migraines daily as of six years ago this month! I wish I had my old migraines back at least I had a break. But after six years we have found the cocktail of meds where I can sleep again every night. Have patience and find a good neurologist! I love mind but our conditions are a journey and finding good treatment is a trial and error long long process! May we all find some relief on our journeys eventually!

  • Sarah Hackley author
    1 year ago

    Thank you for your positive and uplifting response! I agree that it helps so much to be able to share with and talk to others who really understand what we’re going through. I’m also glad you have found something that at least lets you sleep. That’s so important!

  • TBI and still going
    1 year ago

    Number one pet peeve: u need to eliminate stress and why don’t u just go home? I had a 28 day migraine that wouldn’t break and no sick time! I just graduated from college! If we could prevent and control our disease we would! No one wants to live in daily chronic pain! NO ONE!

  • Sarah Hackley author
    1 year ago

    The lack of understanding from others can be truly frustrating. I’m sorry you’ve had such a long cycle. I hope you find some relief soon. In the meantime, I always find it helpful to reach out here at the online community. Talking with other people who “get” it helps me tremendously. Warmest regards, Sarah

  • cindyd
    1 year ago

    Please don’t say, “have you tried _________?” Yes, I have. People are kind and most want to help but when they ask how I am I usually say I’m okay because I am tired of trying to explain. I have them so much that it is my “normal” like so many other people. I am just tired….

  • Sarah Hackley author
    1 year ago

    That’s one of my least favorite questions, too. Like you, I know people are just trying to help but it drives me up the wall, especially since they usually have little to no understanding of what the disease actually is. I feel you. I normally just smile and say “thank you” and nothing else.

  • RhondaL
    2 years ago

    After reading comments I will consider myself lucky. I used to get 1 a week but it last 48-72 hr. Last 24 of it more like a hangover was sick so much. Days like that are gone for me now. Only have 1 a month now if that. Smell can however set what off at anytime and I just want to die then(not really but I think you get what I mean). I do wish more people would realise how much a smell can affect a migraine

  • Sarah Hackley author
    1 year ago

    I’m so happy that your attacks have reduced in frequency. That’s great news! Smells are a big factor for some of us though. My husband offered to switch seats with me at a movie last week, because the woman who came in had on super strong perfume. Thankfully that helped and I was able to watch the show without getting an attack. Sometimes we’re not so lucky.

  • Ritzu
    2 years ago

    I’ve had migraines since I was in 3rd grade. I’m 20 now. When I got my first one, my mom was so sure that a kid that young couldn’t get them. But I did! I’ve always heard people saying that if I lived better, but after all I’ve gone through I would think I did everything. Sports, ate healthy, literally everything. I still have friends saying not to take aspirin but I glare and take more than the recommended dosage.
    Prevention doesn’t help

  • Sarah Hackley author
    2 years ago

    I’m sorry you’ve been dealing with the disease for so long. Childhood migraine is something a lot of people still don’t understand. I got my first attacks as a teenager, but my daughter experierenced her first ones earlier than that. Luckily, I knew what it was. I’m sorry your mother didn’t have enough information at the time. Hopefully, the awareness campaigns will help other children get help earlier.

  • leichelb
    2 years ago

    The hardest one for me is “But you look so good. You are having such a hard time with your headaches but you always look so great”. That is really hard to hear when you are barely holding on, trying to keep it all under control and push yourself almost everyday to deal with the chronic pain. An to hard a PA tell me “well you know you are probably having rebound headaches”. My reply is “How am I suppose to function if I don’t take melds to stop the pain ?

  • Newdancerco
    1 year ago

    They can adjust your meds to reduce the likelihood of rebounds. If you aretaking a lot of NSAIDs, for instance, you could incorporate triptans and gabapentin to break up the chycle. A narcotic can be used in a similar was *(if you can get them), because the rebounds dont seem to stack.

  • Newdancerco
    1 year ago

    Cycle, not chycle
    Migraine brain.

    Also, lppk into white light meditation. Ive used it a could times when i didnt ha e access to meds or help (4 miles in on a Hawai’i wilderness hike, for example, or when tbe meds don’t cut it. I avoid the ER like the plague- i an treated like a criminal there,despite my very strong medical history and very rare use of ER services. Just makes everything harder and more pajnful..
    Here is a source of one version of the meditation. I visualize the light coming in the top of my head and pushing out the pain.
    https://www.wellbeingalignment.com/white-light-healing.html

  • Sarah Hackley author
    2 years ago

    I hear you. I don’t like the “but you look so good,” either. I know people mean well so I try not to take it personally, but it is frustrating. As far as the rebound headaches go, they present in a very specific way. Maybe talking more extensively about how your migraine attacks begin and when they begin will help your PA tease apart what you’re experiencing more effectively.

  • alfredafa
    2 years ago

    I have headaches since I had 11 years old.
    It never stop, The pain never stop, I tried healthy food, it just make the pain just little less intense but not stop, i tried sport (running, ….) result was worse, my pain went up and i felt more difficulty to solve difficult problem. The only thing I can “prevent” is big crisis when they “say” they will come. tried medicines, no effect except adding some pain in other part of my body.
    So yes, when some say their a way to “prevent”, to cure, to make the pain less intense, … I know they are wrong. The minimum level of pain grows a little each day and no way to stop its progress.

  • Sarah Hackley author
    2 years ago

    I’m sorry you’ve been suffering for such a long time, but I appreciate you taking the time to comment. I hope you find something that provides some form of relief soon! My thoughts are with you.

  • RecipeRenovator
    2 years ago

    Thanks for this. I listen to the Nutrition Diva podcast. She recently did a podcast on this notion, that we can somehow “disease proof” ourselves. http://www.quickanddirtytips.com/health-fitness/prevention/the-disease-proofing-myth I think it’s partly our culture, which loves a 21-day-miracle anything, the quick fix, and the notion that we are completely able to control our destinies. I am also a certified health coach (and no, it’s not as simple as signing up on the internet and getting a certificate, it’s actually rigorous training) and just put out a holistic migraine book. I don’t promise that I will cure anyone’s migraines, or that I have “the answer.” Instead, it’s a structured framework for making the lifestyle changes that otherwise feel overwhelming, that may help.

  • Sarah Hackley author
    2 years ago

    Many coaches go through rigorous training, yes. I tried to mention that below in response to another comment, as I know how much assistance a good coach can provide. As someone with an educational background in neuropsychology, I fully understand how challenging behavioral change can be! Often, we need all the help we can get. 🙂 I appreciate your perspective, and I thank you for commenting. I hope your book does well!

  • pigen51
    2 years ago

    Everyone here knows the experience of having someone tell them about a ” friend” who gets migraines and does such and such and it works every time. And of course, we all have had the fun of being told if we just relaxed more, or exercised, or stopped caffeine, or smoking, or whatever, poof, no more migraines. My favorite is the ones who say, oh, I had a migraine once, it was awful. Uh, if you had a bad headache once, it probably wasn’t a migraine. Since I have been having them for about forty years now, the doctors have changed their minds about four times as to what causes them, and they still don’t have it nailed down as to a consensus. So I find it amusing when people try to tell us what they thing is the reason that we get them, and how to cure them. I have them probably 5 days a week, to some extent or another, and it just wears you down, sometimes. I chase down a different path with some other doctor every couple of years, but honestly, it gets harder and harder to find one who wants to have a go at it, and also harder to psyche myself up to try the same old drugs again. Pretty much the only thing that works is when I use a narcotic to get rid of the pain and make me drowsy enough to sleep and an anti emitic to stop the nausea. And of course, most doctors hate that line of treatment, so I usually suffer most of the month, save for a couple of weeks if I plan it well. Sorry to vent, here, but fighting another bad one. All the best for you and the good days make it worth it.

  • Sarah Hackley author
    2 years ago

    The good days definitely make it worth it! Thank you for sharing your story. I’m sorry your attacks are so frequent. As someone who has tried every preventative out there, and had to stop them all (either due to side effects, allergy, or because they simply didn’t work), I understand fully that sometimes all you can do is treat the symptoms. I hope you find a doctor who supports you and/or get some relief soon. Warm regards, Sarah

  • Holly H.
    2 years ago

    Having two absurd comments said to me just today… timely reading. Being into my 7th year of 3 types of constant/chronic migraines — all going on concurrently — I guess I shouldn’t get discouraged by the things people have said, suggested, ordered me to try, ordered me to quit, told me that I am doing/saying/eating or maybe not doing/saying/eating according to them, an article, a commercial, their particular church’s philosophy, or their aunt’s friend’s neighbor’s daughter’s situation. But after spending yesterday in the ER with now an additional brain stem migraine systemic effect… I’m just worn out.

    For sure, when something awful and pain-filled happens, it floors a person. But when one’s everyday life is like that? It is a neurological disorder. And because I am alive today… that’s the only “because” there is. I’m just trying to do whatever I can, whenever I can, as much as I can, as long as I can for right now.

    When I go down to the main floor just long enough to check my mail, sometimes I want to wear a t-shirt that says on the back: “It’s OK For You Not To Understand The Depth Of My Journey … Just Let Be”

  • Sarah Hackley author
    2 years ago

    Holly,

    I’m so sorry you’re struggling so much right now, but thank you for commenting and sharing your story. The “or their aunt’s friend’s neighbor’s daughter’s situation” made me chuckle out loud (because we’ve all been there!), and I needed that today. 🙂 Thank you! I admire your personal philosophy on living with illness. Doing what we can, when we can, and celebrating our own journey is all we can do.

    – Sarah

  • aks868
    2 years ago

    I so completely agree with your article. I cannot tell you how many times well-meaning people have asked me if I have tried one thing or another. In addition, I, myself, constantly try to figure out if there was one thing or another that I did that brought on an attack. I think the hardest thing about this disease is that there is no cure and there is so much stigma attached to it with so little education within the health profession as well as outside of it. Right now, I am suffering through 4 out of 5 days of full-blown attacks; and I had just decreased a preventative because the side effects made me unbelievably anxious. So, now I have to decide, do I up the medicine and deal with the anxiety or do I suffer more migraines–and are those really related or is it just the weather? I believe all migraineurs experience this kind of catch 22, so when people ask, “have you tried this?” it feels incredibly belittling and guilt-provoking.

  • Saratb1973
    2 years ago

    I hate that “Have you tried this” question. No, I’ve been diagnosed since I was 18, and I just thought I’d suffer and complain because they’re so much fun. I even had my current neurologist tell me (before she’d gotten my whole history) that I didn’t really have chronic and intractable migraines, but they were simply rebound headaches from the meds I was taking. The only reason I didn’t immediately demand a new doctor was because she agreed to try me on Topamax as a daily preventive, and it has proven effective for me. At the following appointment, when I could actually formulate words effectively, I filled her in on my history. That very effectively changed her mind on my diagnosis. While I still don’t like her much, she has finally listened to me.

  • Sarah Hackley author
    2 years ago

    The stigma is real, but together I believe we’re fighting it with education and awareness. I’m sorry you are experiencing such frequent and severe attacks right now. Mine have increased again recently, so I completely understand. Have you talked to your doctor about either changing preventatives or adding an anti-anxiety drug to the current one (if the preventative was working and the only reason for stopping was anxiety)? I’ve had drugs make me incredibly anxious before. I usually stop taking them, but if the medication was working, it may be an avenue to explore with your doctor. Just a thought. I hope you get some relief soon.

  • Adorabelle
    2 years ago

    Can I inquire as to what made these people qualified to be health and wellness coaches? Isn’t it an Internet certificate? What are the qualifications of this lead coach? I’m genuinely curious because when I see the phrase “wellness coach” I think someone is going to sell me shakes in a pyramid scheme.

  • Sarah Hackley author
    2 years ago

    There are multiple programs for health and wellness coaches. Some are certificates acquired after a course of study. Some are accredited by an outside organization after completing a course and receiving the certificate. There’s actually no legal requirement to be a “wellness coach” or “health coach” though the coaches I am talking about all had coaching education, and many also had degrees in either behavior/psychology or nutrition.

  • Luna
    2 years ago

    There is still so much old outdated information floating around in books, magazines, websites, etc that it isn’t easy to get the correct information to people. It can seem daunting to reeducate those that have gotten their information from old or just flat out false information. Also, there are people who get occasional mild migraines that haven’t bothered to educate themselves because they have easy remedies. So they are giving out wrong information. Eventually.

  • Sarah Hackley author
    2 years ago

    I agree. I think we’re all working hard to spread awareness of what migraine disease actually is. As always, it makes me so thankful for this community, where we have each other. It helps to know you’re understood.

  • Eileenkos
    9 months ago

    Hi Everyone, I suffered with my first migraine at the age of 18. My mom gave me 2 aspirins , I laid down and it went away. However, as I entered my 20’s migraines became a part of my daily life. My GP didn’t take me very seriously. We started with Tylenol #3 and
    Went o to # 4. From their to Fioricet and on to see a Psychiatrist. I was

    diagnosed with depression an anxiety and more and More pills. Then I was told after I had a baby, they would go away, never had a baby. Then promised after menopause they would go away.

    Fast forward to age 38 and early menopause. Headaches as bad as always. Fell off a ladder. Herniated c5
    C6 had surgery with fusion. Now had
    Neck pain along with headaches. I am on a Fentan patch, I take Percocet, imittex, Topamax for prevention. Anti depressives, anti anxiety meds and I wake up every morning with a headache. I’ve tried Botox, acupuncture. Massage, cranio sacral and trigger point injections. Running out of things to try. So now I’m trying Ketamine infusions. I’ve had 2 so far. I know you need multiple infusions. Has anyone here on this site heard of them?
    Tried them ? Desperate in Florida.
    Sincerely EileenKos.

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