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What I’ve Learned: Six Years of Chronic Migraine/CDH, One Day At A Time

Migraine disease became chronic for me about six years ago when I was 25 years old, ten days after I’d gotten engaged. I also developed Chronic Daily Headache at that time. I was so lost in the beginning and trusted whatever anyone told me. I didn’t know what was happening and trusted the system to take care of me. American culture/society sets us up to think that doctors have the answers and the treatments and they will make us better. I eventually found that I have to be my own advocate and search for the answers. I have to do for myself…no matter how badly I feel. My health is my responsibility.

What I’ve learned is that the more brains working together on my case the better. I’ve had several “second opinions” from headache/Migraine specialists. I think the key is to be open-minded. Treatment is not one-sized fits all, and I had to learn to be willing to try new things.

I’ve gone to a nutritionist to be tested for foods that my body is sensitive to that might trigger me. Under her guidance, I completed an elimination diet that led me to discover food triggers I would have never guessed were making things worse for me. Who knew cinnamon could trigger a Migraine in 0.2 seconds?

I learned how to become a pin cushion by trying out-patient IV treatment, multiple 14 day long hospitalizations with round the clock IV treatment. I’m currently doing small amounts of Botox every 8 weeks and trigger-point acupuncture every week.

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I practiced bio-feedback until I figured out how to make it work for me. This has helped me to learn how to get through difficult times and to tolerate difficult procedures. It did not stop my headaches or Migraine attacks, but has become a tool in my toolbox that I use so regularly that I don’t think about it.

I learned a gentle (non-spiritual) form of Tai Chi that my husband even says is calming when he participates. Calm + Chronic Migraine = Good.

Connecting with others who have Migraine/CDH is probably one of the most important things I do. It helps so much to feel connected to others who understand when so many people do not understand. I have made life-long friends…ones that have sent me packages from across the country when I have not felt well…ones where we call each other sister and mean it. I have learned so much from my fellow warriors by sharing things that helped. I got the gentle Tai Chi DVD recommendation from an online forum buddy.

Reading blogs and staying connected on Migraine sites like this one helps me stay on top of current research and thus my management so that I can competently talk with my specialist and understand what he is doing so that I do not feel at “his mercy” so to speak. We are a team in every sense of the word meaning we both contribute to my treatment. He has the experience, the research credentials, & education and I am the expert of my body and what I’ve learned.

Counseling has also been a vital part of my Migraine management. My husband even started seeing my therapist as he realized it would be helpful for him as well. We also sometimes do joint treatment sessions. Disabling, chronic Migraines changed my life completely from a vibrant driven young speech-language pathologist to a person who sometimes feels imprisoned by her house and spends most of her time in bed/on the couch with her loving three cavalier king charles spaniels. So, we both needed help in that adjustment and continue to need on-going support as we learn how to navigate a caregiver/dependent relationship in addition to a husband/wife relationship.

The most important thing I’ve learned is that though I did not chose to have this disease, I *can* chose how I respond to it. I can gripe and complain and feel sorry for myself and feel that everything is against me. Or I can live fighting for myself, learning and trying to make things as best I can. Limitations are a part of the life of a chronic Migraineur. But, in the midst of it all, I can live and find hope…one day at a time.

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

  • April H
    6 years ago

    I am so grateful, I found this site today. I am 3 years in. Reading you post and replies helped me. I am so glad, please don’t take that wrong, but yes glad, I am not alone. When so many around you don’t understand, It takes some of the enery you trying to muster up for basic functions. I just came to terms with having to leave my job. I have exhausted all my FLMA (intermittent).
    I now realize trying to hold on too it was a STRESS in itself. I am grateful as well for the true Woman of God I have around me, who literally pray everyday when I can’t.
    One thing that was never tried is a sleep study. SO, I am supposed to have one this month.
    I know I am rambling.. Sorry! I am just refreshed to read, hear and leave a comment in a forum where PEOPLE really KNOW and UNDERSTAND!

  • Katie M. Golden moderator
    6 years ago

    April,
    Welcome to the site! I’m so glad you feel like you belong. I’m in a similar boat with having to come to terms that I will likely not go back to my job. It’s hard, but so important to take care of your health. I believe that things will work themselves out. Stay strong!
    -Katie

  • roseann
    7 years ago

    Wow…well written. Your article brought me to tears. As someone who has suffered with migraines for 25 years, I too choose how to respond. Being a nurse, it is difficult for me to give up being the caregiver and become the patient. I work as much as I can and often that means suffering through the day, on meds, waiting for the clock to hit 4:30 so I can go home and sleep. I appreciate those days that I am symptom free more than most can imagine. I am always looking for information & I was wondering if you could reccomend any blogs to follow. Not personally knowing anyone that suffers like me, I find it helpful to connect with others that truley understand and have walked the walk. Thank you for you artice & time Kelly!!!

  • Monica
    7 years ago

    LOVE this. Thanks for sharing.

  • kathyhorton-bishop
    7 years ago

    Thanks for your article….I am on year 6 of chronic migraines that have not responded well to treatments and medication….my trigger list is way too long….and ever changing…I am sure there is probably a co-morbid condition adding to them…but have yet to identify it….been through the doctors too…live in a very small community (about 350 people in my town)..raising two teenage daughters on my own…(my husband lost his battle with esophageal cancer On Good Friday April 6 ,2012) He was my rock…my caregiver when I couldn’t care for myself and my support….I’ve tried to reach out to our community but most don’t understand my challenges and some have even said some pretty mean things about the fact I get disability….even my daughters who have had their battles with migraine have a hard time dealing with a Mom who is under the weather more often than not….I have not given up and will not…I take each day as it comes and when that’s too much I take it moment by moment…People really have no clue how strong we are or have to be to suffer through and battle this disease every day of our life…like you I am trying to do my part to educate the public one person at a time….I may have chronic migraine disease but I WILL NOT LET IT HAVE ME…..

  • Teri-Robert
    7 years ago

    Kathy,

    My heart goes out to you, but I totally LOVE your last statement. In fact, I have a tee shirt that says something very similar on it.

    Living in a small community can make it more difficult, but even some Migraineurs who live in larger areas end up having to travel a bit to get to a true Migraine specialist to get things turned around. I used to drive eight hours each direction for my appointments, and to this day, will tell you that it was well worth it. You might take a look at our article about specialists at http://migraine.com/blog/is-it-time-for-a-new-migraine-doctor/. Thanks to help from a good specialist, I have decent control of my Migraines again. They can still be a problem, of course, but they’re so much better than before.

    Hope this helps. You’re NOT alone!
    Teri

  • Janene Zielinski
    8 years ago

    You are so right about the doctor/migraineur needing to work together. I like the way you explain the relationship and your responsibility in it. I feel kindred spirit to you in a way. My first “major” migraine was exactly one week after my wedding. My husband had no idea what was in store for our future, but we’ve made it through 26 years now. I am blessed to only have a few a month, not everyday like you, but your outlook is so positive – it is an inspiration to me. I am glad the bio-feedback and Tai Chi helps you. I am living gluten-free and that is helping me. It is such a great thing to find anything that helps – even slightly. Keep on fighting and trying to make the best of it. Thank you for sharing.

  • Kelly Smith Wahle
    8 years ago

    Janene, Oh, I hate to hear that your first major Migraine was after your wedding. My wedding day was joy and pain all mixed together and by the time we got to the day, we already knew what “in sickness and in health” meant. Congrats on 26 years! You must have a great man supporting you!

    I am also gluten-free. 🙂 For a year and a half now. I actually eat only whole foods-nothing processed-no preservatives. It was such a difficult change for me at the time, but now it is much easier. Although, not being able to have take-out/eat-in any restaurant unless they are so high end that they have a chef and I can speak to him has proven difficult (and costly!). My husband does not have time to cook as he’s so busy taking care of me and the house and working, so if I have a good day, I try to use some energy to make a dish I can freeze. Or I eat very basic yummy foods. 🙂 I agree about it being so wonderful to find something that even slightly helps. Every little thing adds up! Thank you for sharing and listening!

  • Orry Farrell
    8 years ago

    Very elegantly said. I have suffered from migraines for many years. Some days are absolutely horrible……..others are good. I do know some of my triggers but wish more research could be done to help stop this pain in it’s tracks. I, too, am on daily meds to try and prevent the headaches, but they still manage to bust through. Many people do not understand how debilitating these headaches can be and think we are just complainers or malingerers. My wish is to feel better for good…….and for no one to ever have to suffer through migraines again.

  • Kelly Smith Wahle
    8 years ago

    Orry, I hear you about the research and never wanting another person to have to go through what I do! Have you ever heard of the Migraine Research Foundation? It is incredible!

  • Denise Farrell Geisz
    8 years ago

    I am really hoping the deviated septum surgery works for you!!!!

  • Kelly Streeter
    8 years ago

    No fun…I suffer to Orry. We can only hope for good days

  • Regina Ware
    8 years ago

    I have been a migraine sufferer since the age of 13, that is 35 years. My head hurts everyday. I am on five different medications to help control them, yet I still have the kind of pain that will take me to my bed in a room as dark as I can get it with my head under a pillow three or four times a week. I am going to start treatment with a therapist again and yes, I watch what I eat because I know certain kinds of foods trigger a migraine. Disabling migraines are very hard to live with but I try to stay upbeat about life and I try not to let them take over my life. I am going to see about acupuncture treatments. I am willing to try just about anything that will bring me relief from this disease.

  • Kelly Smith Wahle
    8 years ago

    Regina, I hear you! Disabling Migraines are SO hard to live with. And I know what you mean about wanting to try just about anything for relief. I found that gluten is a trigger for me and oh my goodness, I thought I was going to die because I could not eat a donut from Dunkin’s any more! But it was worth the trade. I just started something called cold laser therapy. It is two minutes, painless and supposed to decrease the inflammation in the nerves. All the best to you on your journey!

  • Kathy Allen Casella
    8 years ago

    I need help. I have been on disability for my chronic migraines sinces 2005. I think I’ve had one day since then headache free. I have tried different doctors, tons of meds and yet nothing works. I did have a stroke due to the pain, they believe. At one point two years ago they thought that I had the beginnings of an anyersum. My dad died from one and my sister had massive brain surgery and survived two leaking anyersums. Please, anyone, give me advice. I’ve only been out of the house twice since July. I have four grandchildren, three children and a husband who I rarely see. I miss my life. I had the most perfect job, which I lost to these headaches and now I’m losing any quality of life. It’s beginning to affect me something terrible. Help please.

  • Maria Mazzella
    8 years ago

    I’m so sorry for all the pain that you got through it is so hard to struggle on a daily basis. I have been suffering for the last 2 years I got it when I was 26 the doctor told me that for woman the usual ages are from 25 to 45. I have chronic daily migrane and I know the feeling of being tarpped in your house I feel like that also. when this stared I was also starting my career in photography and I was very active in my social life. I def believe in hope and what you wrote was beautiful. I have hope that one day we can all be better in this journey that we facing at the moment. wish you the best.

  • Kelly Smith Wahle
    8 years ago

    Maria, Gosh, I’m so sorry to hear you have been suffering too! It is so hard when this disease changes our life path and what we thought we would be doing. I was a speech language pathologist and grieved the loss of being unable to do what I loved as a career. What helped is looking for something that I *can* do while I’m not feeling well (mine is writing-though not for $). I hear you about the changes to your social life. Thanks for your comment and I hope you are as well as possible today!

  • Heather Margaret Scott
    8 years ago

    I’m 15 and mine changed towards the end of last year. It’s good to know there is some sort of hope, even if it doesn’t seem that way. Thank you for that.

  • Kelly Smith Wahle
    8 years ago

    Heather, I’m so sorry that yours changed and that you are affected at 15! There is always hope. Pain makes it hard for us to see clearly sometimes, and that is why I am glad we have this great community to lean on.

  • Michele Ott
    8 years ago

    What a beautiful, well spoken piece. All of us need to remember hope and to take life one day at a time. Cherish the good, pain free days, and keep the light burning at the window in hopes that those will outnumber and eventually eclipse our days filled with agony and despair.

  • Kelly Smith Wahle
    8 years ago

    Michele, I love what you wrote here. Thank you for sharing! I do not have pain-free days, but the visual of having a candle of hope burning so that someday things will change is inspirational. Really, I am going to buy a candle (scent-less of course!) and burn it where I can see it everyday and on those days (like I’ve been having lately) where I am without hope, I can look to that for hope! Thank you. You are fantastic!

  • Mary Hancock
    8 years ago

    beautiful post Kelly. Awesome way of seeing the good that is in this life adventure. I am so sorry that you suffer so much.

  • Kelly Smith Wahle
    8 years ago

    Thanks Mary! I wish no one had to suffer from Migraine disease.

  • Julie Warren
    8 years ago

    I am 26 years old and was diagnosed in January. (After having a headache every single day for, at that point, over 6 months) with chronic daily headaches that often turn into migraines. I’m seeing a neurologist and he has me on a few different medications but nothing seems to help. I am currently on day number 10 of a really bad migraine 🙁 none of the “migraine” meds have worked at all for me. Now he has me on a seziure medication that also is supposed to help with headaches, as well as a muscle relaxer, and fioricer w/codiene for when they get extremely bad. It’s so frustrating, and I don’t know what else to do. I’ve had occasional migraines since childhood (never treated) and so did my mom… but nothing like this until last August (2010) and it’s been every day since. He even tried shots in the back of my head… occipital nerve blockers he called them. They hurt really bad, and if anything, made the headaches worse! I’ve tried avoiding caffiene, adding caffiene, avoiding certain food chemicals… I don’t know what else to try! 🙁 I just want my headache to GO AWAY!

  • Kelly Smith Wahle
    8 years ago

    Aw, Julie, it sounds like I walked through a time where you are now. I’m sorry that nothing seemed to be helping (at the time you wrote this–I’m so behind!). I also take an anti-seizure medication for prevention. What I find so frustrating is the trial-and-error process of medications. Is your neurologist a headache specialist? A headache specialist is really important! Never give up, girl! The moment I think I’ve tried everything, I find there is something new that might help. There are over 100 medications used for Migraine prevention which is really exciting. I hear you on occipital nerve blocks. I’ve had a few goes with those and I *hated* them. Now I’m trying something new called cold-laser therapy that is supposed to help decrease inflammation around the nerves. My doc is always going to headache/migraine & pain conferences and this is the new thing he’s trying. I hear you about wanting the Migraines and headaches to go away! Keep holding onto hope and take one day at a time.

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