My Dead End Search for the Root Problem

My Dead End Search for the Root Problem

Unqualified migraine detectives

When I was first diagnosed with chronic migraine, I was obsessed with finding THE root problem, and thus the answer to make migraine go away forever. So were my parents. We all wanted to fix it, and we assumed that with enough detective work that there would be a chance, however slim, of finding that one food, activity, pattern of events, or secret evil force that was behind all this pain and disability.

We thought this even with the knowledge that there is no cure for migraine, that it has a genetic component, and that chronic pain is rarely something that just gets up and walks away. We were baffled with the reality that something like this could come on, seemingly without rhyme or reason, and change the life of an otherwise “healthy” person.

We asked questions.

Is it something in the air at work?

Is it garlic? Chocolate? Cheese? 

Is it the coating on your non-stick frying pan coming off on your eggs and poisoning you every morning??

Is it that parasitic toxoplasmo-whatever from the cat litter box invading your brain???

The real answers are complicated…

We spent a lot of energy wondering about these things even when none of these questions proved helpful. What did help over time was a gigantic, complex, carefully tailored treatment plan created with the help of my migraine specialist, and backed by scientific evidence. This treatment plan encompassed every part of my life and included a rigid sleep routine, gentle exercise, food trigger identification and avoidance, preventative medications, acute medications, mediation, yoga, breathing techniques, medical acupuncture, massage, and counseling. It was, in fact, the opposite of a single cause or simple quick fix, and a heck of a lot of hard work. Over years, lots of emotional and financial support, plus a healthy dash of hardcore determination, the migraine attacks retreated noticeably giving me more good days than bad.


After a couple of years of relative stability, I recently experienced a chronic migraine relapse. Looking at my migraine journal, it seems this happened over a few months of pushing my body harder than usual, especially with long distance travel. And even though I now have a much better understanding of how migraine and chronic pain work (neurons that fire together wire together, genetics, childhood trauma, neuroplasticity, blah blah blah) I was still tempted to search for that one root cause so I could dig it up, throw it in the compost heap, and get on with my life.

And really, how arrogant of me: migraine researchers and specialists don’t claim to understand the root cause(s) of migraine, so how on Earth could I?

Onto acceptance

From what I gather, shaking chronic migraine is very rarely just a matter of cutting out one mysteriously powerful trigger or finding a single magical treatment. In my experience, when someone claims this they are either incredibly lucky, or they’re selling something.

When we are suffering, and struggling to maintain a sense of purpose, hope, and joy in our lives, it’s tempting to look for quick fixes. But when we can admit that a problem might not have a quick fix (even though a tiny part of us might still cling to that dream), we can begin the real work of acceptance and living our best life with migraine. Until there’s a cure…

Has looking for quick fixes ever led you down the wrong path? How did you get back on track?

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 (18)
  • micheledj
    7 months ago

    The frustration is real! It only took 5yr of vertigo and pain to be diagnosed with migraine. So far, the ER doc who recognized vertiginous migraine is the only medical professional worth their salt. A book I found out about (an oldie but goody) has been the most help thus far. The neuroMD I was “assigned” is *ahem* not particularly helpful- just tries to throw drugs at it. I don’t tolerate tryptans or topiramate. Seriously, just put me out of misery on either of these. Thank heaven the PA has a better grasp of migraine, but is still quite limited in knowledge and resources. This group has certainly helped decrease the isolation and discouragement of the past 6 months

  • sfnative
    8 months ago

    I’m in Year 34 of Chronic Migraine. Having moved several time, I’ve had to connect up with new migraine specialist on those occasions, all of whom required that I perform the much touted food elimination food plan. For me, this was always to no avail, as I kep telling each successive physician. It wasn’t until last spring, April of 2017, to be exact, that I made startling discoveries. #1. We had a family meal at a Chinese restaurant. Hadn’t eaten Chinese for years, because we used to live where Asian food was awful. Took several bites and – Boom – huge spike in pain. Honestly, I thought it was the dynamics at the table, as lots of loud, family talking all at one time can also predispose me to spikes. The following week found us at the mall with our granddaughter who wanted sushi. I ordered her sushi and myself a vegetable and rice plate. Several bites into my lunch and – Bam – huge headache spike. I nearly ran over to the Japanese food vendor and asked if they used MSG and was told MSG is in everything they serve. Ha! Finally, besides stress, one “INGREDIENT” trigger found. When I got home, went online to a wellness forum I visit and wrote to a specific person who also has chronic migraine. She got back to me, asking if I had ever tracked my intake of “MODIFIED FOOD STARCH(ES).” No I hadn’t. That was a huge trigger for her. Yet another ingredient. Not a food, but an ingredient. 2 days later, my husband comes home from Costco with a huge bag of snacks and asks me to taste it. I took a few of the many different little pieces, ate them, remarking that it was really salty and within 3 minutes – BAM – spike in migraine. “Give me that freaking snack bag,” I said. Looking at the ingredients, there it was: “Modified Food Starch.” Man, I tell you, I avoid this stuff like the plague. This is how things have since boiled down for me: I’ve eliminated all MSG and chemically-related ingredients; all modified food starches; all modified protein, including soy protein; anything in an ingredient list which reads “modified.” I’ve always cooked from scratch. However, this also has meant that when my husband cooks, he can no longer make meals using the garbage stuff that comes out of boxes & bags. I simply won’t eat it and he knows it. Also, this really limited what I can eat when we eat out. I literally stare at the menu or at a serve yourself brunch I stare at the food and figure out what is or could be in it. I very often have salad, fruit, vegetables, simplified starches and meat. Don’t hesitate to ask the wait staff to ask the chef if MSG or any modified starches are used. They can be hidden, but the chef should know. Where does this leave me now? My huge spikes in migraine pain, which would last anywhere from 2 weeks to 3 months, have decreased by 80 whopping percent! And this all for ingredient contained WITHIN food, not foods themselves. I would urge you to eat “cleanly,” which is what I’ve been doing since May1st 2017 and cannot tell you the difference this had made in my life. Migraine is not gone, (last month I had 3 bad days), but 80% decrease in pain spikes is humongous and I feel so blessed.

  • jlorimor
    8 months ago

    Oh so true. I still think I will find the key. I’ve accepted my limitations and I’m pretty open and blunt about what I can and cannot tolerate but everyone I meet, family included, can’t accept that I’m doing everything in my power to overcome this debilitating disease.
    Oh you need to lose weight. You need to exercise more. You need to go vegan or carb free or gluten free. On and on. It never ends.
    Now it’s my career. I’ve gone through so many jobs in the last 7-8 years bc I miss so much work. Every time I get a new job I get excited and think this one will be better. I will find the key to not miss work and be able to stay. Every time I’m disappointed and get depressed and down on myself. I get angry there are no answers to a disease that is so prominent. I get angry there isn’t enough research. I get angry that I can’t afford some of the treatments that are available.
    I have an interview tomorrow for a job and I’m already worried what will happen if I get the position. I’m the only person to support me. I don’t have a partner to help financially.
    Anyway I don’t know that I will ever just accept there isn’t a cure. I have however learned better self care and patience with myself.

  • mammapeaches (Susan McManus)
    10 months ago

    What’s the saying? Same song, different tune? I felt like you were writing my story! I like to call things that work my “puzzle pieces”. Have found three big ones, but I’m not sure our migraine puzzles can ever be completed.
    Thanks for sharing!

  • jowan9
    11 months ago

    I too have read everything I could get my hands on about migraines, have been on many treatment programs, and have done everything that I have been asked to do to prevent migraines.

    My therapies work ok for a few years and then need to be swapped out. I’ve learned that migraines are something I have to address every day, all day long. If I don’t listen to my body’s early warning system, I pay dearly.

    One thing I know for sure is to be assertive about preventing attacks. That means very open conversation with friends. I can go but only for an hour or not in the heat of day. I tell everyone that I never know what I’ll feel like at any given day. I’m willing to schedule breakfast with you but if I get a migraine I’ll have to call and cancel.

    I do not make firm commitments to do anything for the same reason.

    It’s important to realize that you can spend thousands of dollars on “snake oils” offered on the internet. If they worked, every doctor would be recommending them and every news source would carry stories about them.

    Because migraines are so complex, as you stated, special medications and restrictions have to be figured out on each person. No two bodies are the same.

    The best approach I have found is to accept migraines in my life and chose to do things that bring me happiness in my life. It helps. Audiobooks have been a real bonus when I have status migraines and am bed bound most of the days for days on end. I can tolerate them most of the time.

  • wappaw
    11 months ago

    While I agree with almost all of the information included in these articles, I think two very important items are missed that add to the frustration and stress associated with migraines. All of the doctoring and medications take time and money. While I was working 6-7 days a week, I had the money, but it was difficult, but not impossible, to get time off to see the doctor and have all the testing completed. Now that I am retired I have the time, but the cost to me has skyrocketed.

    I recently found out that I could get a rebate for the cost of my BOTOX treatments. If this site had links to other medical assistance programs I am sure it would be appreciated.

  • Deb
    11 months ago

    Thank you, Anna, for this article. It certainly reflects my experience with chronic migraine disease. I do have a wonderful headache specialist who is guiding me through the maze of preventatives, treatment, and rescue possibilities. He has helped me have some migraine free days, and I am grateful for every one. Acceptance has been key to relieving stress, alleviating guilt, and allowing myself to “go with the flow.” In each day, I do what I can and no longer worry and fret about what I cannot do. I believe acceptance has been the answer to frustration and grief for me. Although I will never stop trying recommended treatments and hoping for more migraine free days, I accept that I have a human condition that is a neuroligical disease that is unpredictable, not well understood, for which there is no identifiable cause, and is untamable. My greatest comfort has been my own acceptance of myself with this condition. I really appreciate this forum. I learn alot here and find that knowing so many others experience this disease in similar ways that I do helps me accept my own reality and know I am not alone.

  • jowan9
    11 months ago

    Once I learned to accept my chronic migraines and daily limitations, I was able to change the way I viewed my life. Instead of blaming myself for all the things I wasn’t able to do, I learned to treat myself the way I would treat my best friend. I’m glad you’ve accepted yourself as well.

  • jowan9
    11 months ago

    Once I learned to accept my chronic migraines and daily limitations, I was able to change the way I viewed my life. Instead of blaming myself for all the things I wasn’t able to do, I learned to treat myself the way I would treat my best friend. I’m glad you’ve accepted yourself as well.

    Be gentle to yourself!

  • Leslie Coutsouridis
    1 year ago

    I’ve had migraines for 40 years. I accept the limited life style that I need but I will never give up in finding control of them.

  • jowan9
    11 months ago

    Me too! Maybe someday we’ll get lucky! I won’t give up hope as long as I have breath in my body.

  • lisa c santa cruz
    2 years ago

    excellent post and very well stated. i, too live the same way but now i struggle with the anxiety that propels me into shaky legs and constantly trying to find a way to rest through this new phase of migraine. too sick for yoga at that moment but breath consciousness has helped and elevating my legs super high or soaking feet in cold water …rather be cold than flush, sticky and hot.
    as far as causes; too many to list but for me it can be just one thing that will cause an episode of a full blown migraine. the cohesiveness of mind and body working well for days at a time results in less migraine for me.this forum has saved my life and has led me through many discussions about migraine suffering , tolerance, acceptance and compassion for myself and others surrounding me that are affected daily as a result of my illness.

  • NanceInNj
    2 years ago

    Anna – thanks for your post. A great reminder to me that migraines have complex origins and solutions, and that we are not alone on the path. For my own experience, I have known a good many frustrations and seeming standstills in the search for the right solutions or at least better solutions. As with you and the others commenting, despite searching, I’ve found no singular cause, and certainly no singular treatment. I naively (or optimistically) hoped when I first sought treatment that there would be A Pill that would manage the migraines so they would not control my life. To my disappointment at the time, the first year brought me precious little relief with one, two, three different meds, plus trying assorted curealls, life changes and searching for that elusive food trigger, To my great relief after years of trying various treatments and life changes, I have arrived at a combo which has begun to allow me more good days than bad in any given week. Acceptance has been tough – it’s hard not to want to,scream, “I want my life back” some days (lots of days)…though easier, when the sacrifices made for the benefit of migraine “control” payoff with actual improvements. I’ve found I’ve had to become much more adaptable in general and charitable to myself to accept the bad days, missed opportunities, etc. lots,of,self talk, and a supportive wife get me back to acceptance and out of the frustration that I feel feeds the beast – as stress is a major trigger in my case. Thanks to all for,sharing your stories,

  • lisa c santa cruz
    2 years ago

    honest post … thank you!!! STRESS IS A HUGE COMPONENT. i have lost 11 years of my life through migraine suffering and trying to get to the bottom line has been all i do next to work. this past year i have been better and realizing that i have a chronic disease and i need to live with it or have it take the next 30 years ( if i am fortunate to live that long) .

  • Carolyn
    2 years ago

    Thank you, Anna. I agree there is no easy fix or “that one trigger”. I also have shown great improvement when doing many many things, daily and stick to a rigid routine. For me it is: Botox (every 12 weeks), weekly Acupuncture (TCM), no gluten, sugar, processed food of any type, no alcohol, no stress, rigid, routine sleep, chelated magnesium, tinted glasses, limited screen time, exercise, meditation … and the list goes on as I find new suggestions. For me, even if a couple of my strategies ‘fall off’ migraine can win. It’s a struggle each day, but after a couple of really terrible years there is hope that I may be winning!

  • Hope and a Prayer
    2 years ago

    Thanks Anna for this post; you sum up the journey that each of us is on and point us to the one thing that we know for sure will have an impact on our life with migraine: acceptance. I find that sometimes I can accept this disease more easily than others. When I get to day three or more of an episode, my acceptance starts to wane and the urge to scream (quietly) takes over. It’s my experience that acceptance, like the grieving for what we have lost, is ongoing. And, I suspect, the more we accept, the less we will grieve.

  • Tamara
    2 years ago

    Over the past 2 years since my migraines have gone chronic and sitting at 4-5/10 each day with bad flares 2-4 times a week. Every time I find something new and it doesn’t make a big difference I relapse and fall into a deep dark hole (complete with depression, anxiety and dark thoughts). Doctor says “this drug will help, it’s a good preventative”, I take it and nothing happens – or my pain even increases. Try cannabis …. okay fine I kept holding off but I’ll surcome and try it …. it does nothing.

    I also find it really hard to continue to do everything (sleep hygiene, proper diet, hydration, yoga, physical and mental exercise, relaxation etc) when I end up with a couple of very bad weeks. I’m doing everything right! Why does my body get worse?

  • Marcia Kavulich moderator
    2 years ago

    Hi Tamara. Thank you for sharing with us. It sounds incredibly frustrating to keep trying to “do everything right” and not see any results. I thought you may relate to these two articles: https://migraine.com/blog/doing-everything-right-and-still/ and https://migraine.com/blog/youre-everything-right/

    We hope you have a doctor or find a doctor who you feel comfortable with as you navigate and deal with the pain. We are grateful you’re part of our community and hope you experience some relief soon.

    -Warmly, Marcia (Migraine.com Team)

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