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Finding Nemo

Migrane Awareness Month Just keep swimming: How do you keep going in life when Migraine or another Headache Disorder deals you a difficult set back?

If you’ve been dealing with migraine disease for years now, you’re probably familiar with the ups and downs that are part and parcel of this illness.  Sometimes I hear acquaintances say, “Oh, I had migraines for years, and then I tried xyz, and I never had another one!”  My immediate reaction is hope followed by a touch of dread just a split-second later.  I think back fleetingly to all the would-be near-cures I’ve tried over the years:  the preventive medicines, the vitamins, the supplements, the lifestyle changes, the dietary restrictions, and more.  For many years (perhaps until I finally got a little jaded?) I would adopt each new treatment with the real and sparkling hope that this—THIS!—might be the solution I’ve been looking for all these years!  So far no long-term reprieve has come my way, and it’s certainly a medical fact that there is no known “cure” for migraine.

I’m quite lucky in that I have had one or two sustained migraine-free periods in adulthood.  The most amazing one was in my late 20s—I was doing so well I thought for a while there that I may have to abandon my “Migraine Girl” nickname and blog!

But they came back.  For me, they always do.  And the setbacks are particularly rough when you’ve convinced yourself that maybe migraines are a thing of the past.

Setbacks have been a little easier to deal with emotionally as the years have passed (I chalk that up to experience and my always-in-progress practice of trying to be mindful and stay in the moment), but they’ve gotten more and more complicated, logistics-wise.  In previous years, my schedule was relatively flexible and having a migraine knock me out for days meant I missed some part-time work, some free time with friends, and even some vacation days.  But now that I own a business that requires me to be mentally and physically present for the entire work week, an intractable migraine episode can lead to cancelled appointments, disappointed customers, and family and friends who are bumped because what little healthy time I have I often need to reallocate to my business.

When you have a lifelong chronic illness (or two, or three, or more!), finding peace may only be possible if you start to face the fact that setbacks are not only possible but highly, highly probable. I make my schedule and my appointments and stick to them as much as I can, but I always know in the back of my head that I will miss as little as 10%, as much as 75% of what I’ve planned.

Wallowing in my frustration and temporary migraine-induced depression during a long attack doesn’t feel very good and doesn’t serve much of a purpose.  So, though I don’t try to act too tough or rough with myself when I need to rest, I do try to keep my eyes ahead and keep moving along.  I cancel what I need to, apologize to those I’ve let down, and I keep swimming. I try to remember that, even when I’m lost in the cove and it’s dark and cold and it’s likely there are migraine-predators in my midst, I try to keep swimming up, up toward the surface, toward the light. Toward home.

Learn more about the 2013 MHAM Blog Challenge and other MHAM events by visiting: 2013 Migraine & Headache Awareness Month Information Page

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

 

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

  • Nancy Harris Bonk moderator
    6 years ago

    Hi Freda,

    Thanks for sharing the details of your migraine with us. Do you have any other symptoms along with your migraines? When we don’t respond to medications, terms like refractory or intractable are more commonly used. There is something called MELAS -mitochondrial encephalopathy, lactic acidosis and stroke-like events and I wonder if you actually the correct diagnosis which is so important for us. If we have the correct diagnosis we can get the right treatment and learn all we can about it. Let me share some information with you on this topic;http://migraine.com/blog/migraine-management-essential-diagnosis-and-doctors/.

    I hope this helps,

    Nancy

  • Caletta Carroll
    6 years ago

    I have had chronic migraines for 20 years now and haven’t found anything that actually”works” on them. I have more days with them than I do without. I get so frustrated with people who tell you that “if you would just try this, eat this, stop doing that or take these” you wouldn’t get HEADACHES!! I feel like I need to hand out pamphlets informing people about migraines in order for them to understand! I even feel as if my Dr. is tired of hearing about it. I don’t know what to do anymore. I have depression that is getting worse,alot of trouble sleeping and practically live in my bedroom. I don’t enjoy much of anything anymore. Even when my husband and I have company over, I stay in my bedroom 99% of the time. People who talk loud really bother me and most womens and mens perfume and colognes cause a migraine. Is there anyone out there I can talk to? Thanks, Caletta

  • Freda
    6 years ago

    Hi Caletta. I hear what you are saying! I am the same way.I have suffered since I was 12 and now am 51.The problem I have is that I was diagnosed with “migraine encephelopathy” last year which means I do not respond to ANY medication to relieve or abort the pain, this was concluded when my neurologist did many tests and came to this conclusion when my eeg’s were questionable, I dont respond to medication, and my spinal fluid protein is high above 45.So after 40 years of pain and trying everything we now know migraine encephelopathy is me, which my neurologist said he has only known 3 people with this in his whole years of practice.My pain though is continuous and chronic which means all the time I am in pain! After me trying everything I can at home, I end up in hospital every 3 months or so to see if more aggressive treatment can be done usually 3-4 days in with very little success, I go home and start all over again.This leads to depression, isolation,miss-understood, hopelessness at times and wondering what i am to do now.I have recently moved back to ontario and will be looking for a headache-specialist or headache clinic in Toronto or closer to see if anything can be done for me.I can’t give up or what have I got to fight for.

  • The Migraine Girl moderator author
    6 years ago

    Caletta, my heart is breaking for you, yet I also feel some hope. I urge you to look at the link my colleague Ellen shared–it’s not uncommon to be in crisis when dealing with migraine and depression, and there are people who can be good listeners and help you: https://migraine.com/blog/migraine-crisis-help/

    I also would urge you to ask your husband, a sibling, or a close friend whom you trust to accompany you on your next healthcare visit. If you truly think your doctor doesn’t believe you or isn’t taking you seriously, it’s time to start looking for a new doctor. Considering how serious your migraine disease has become and how depressed you are feeling, a migraine specialist may be in order. http://migraine.com/migraine-headaches-doctors/

    Again, I am heartbroken to read your words. Please know that, even though we are just virtual friends, we writers and readers at Migraine.com are here for you and are listening, understanding people who BELIEVE you and want you to be as healthy as you can be, both physically and mentally. It’s a hard journey, but things can get better for you.

    Do keep us apprised of your progress and take good care. I know that I, for one, will be thinking of you and sending good energy your way.

    With love,
    The Migraine Girl
    Janet Geddis

  • Ellen Schnakenberg
    6 years ago

    Caletta – we are here for you. Our entire community is about education and support. There are literally thousands of articles and posts here to learn from, and connecting is easy on the forum which can be found here: https://migraine.com/forums/ Vicki has a great place to start from though. If you feel that you are in crisis, please seek help too okay? https://migraine.com/blog/migraine-crisis-help/

  • Vicki
    6 years ago

    Caletta, I’m sorry you’re having such a hard time. I certainly understand. 30+ years for me. My headaches have ironically taught me a few things over the years. And yes, a lot of them have taken years to practice.

    1. Pick your battles. Don’t sweat what you can’t change. Accept it/them for what they are and go on. It only made me more tense, and thus, more pain.
    2. Make your physical and mental health a priority. If you don’t think your dr. has your best interest, find another one! Find a psychiatrist to help with the depression meds. Regular sleep is VERY important! (I have to take something every night)
    3. Listen to your own body and your instincts. I’m a researcher at heart, and I’ve learned so much over the years. A couple years ago, I found an article online about tannins. I got to thinking about the items on the list. Begrudgingly, I gave up my heavy intake of sweet tea! And just in case it was caffeine instead, I only drink pop w/o caffeine. My chronic daily headaches(which were a little different then my migraines, but I was still light-sensitive) have dropped 99%!!!! Try to find your triggers and take them seriously. Lack of, and regular sleep is a big one! Do whatever it takes to lessen stress.
    4. Forget the people with the “cures”! Remember, they HAVEN’T walked a mile in your shoes, how the heck would they know what you’re feeling??

    I still have to take Topamax every day, and I’m thankful it’s there and that it works for me.

    I wish you all the luck in the world, and remember, there are many, many of us in the same boat!

  • Caletta Carroll
    6 years ago

    Help PLEASE!!!

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