A Caregiver’s Honest Look at the Long-Term Effects of Chronic Migraine

A Caregiver’s Honest Look at the Long-Term Effects of Chronic Migraine

By the time my wife and I met, she had already been suffering with chronic daily migraines for years. Due to this, my baseline may be a bit different than others. Although she was in pain daily, she was still a fairly upbeat and outgoing person.

Obviously, the outgoing part was limited to days that were more tolerable than others, but we managed to find little adventures to go on from time to time as the pain levels allowed.

Trying new treatments over and over

During this time, my wife had already been through a handful of neurologists. Each one promising that their (one trick) treatment would be the thing that gave her breakthrough type results. Ever the positive one, she would anxiously wait to see if the results of their treatment were truly life-changing (with every hope that they would).

Unfortunately, one after the other, each doctor would try, and fail. Being an understanding person, my wife was all too familiar with the knowledge that what works for one, does not necessarily work for someone else.

Cookie cutter mindsets

Although each neuro doctor she saw was unique in their own way, they all seemed to have the exact same mind frame.

Medication X, fail; Medication X, Fail……Pain Management.

Sometimes treatment would be continued for three to six months before they decided they’d had enough while other doctors and treatments ended if the very first treatment or medication didn’t work. But pain management was always their “go to” response at the end.

If there is a familiar ring to this, it is because Albert Einstein once defined insanity as: Doing the same thing over and over again and expecting a different result.

Fast forward a few years

After several years of trying every medication doctors were willing to prescribe and even going through with an experimental surgical procedure that was proclaimed to be “life changing” by the physician that came up with it, only to find that none of them helped; my wife began to change.

We would still attempt to find adventures on the good days, but they were growing shorter. Riding in the car together long enough to go pick out Redbox movie rentals took the place of going to the local theater. Trips to restaurants started to get replaced with quick stops at a drive through window to pick up something because it was easier than cooking.

The impact of worsening migraines

Understand that this is in no way me complaining about my wife or our life together. These are simply changes that took place over time. There are exceptions to these changes as current as this article is being written. We just have fewer and fewer of them as the migraines seem to be getting worse. As a result, we cherish each little adventure even more.

An unfortunate but understandable change was happening in my wife’s personality. Medications that were beginning to lose their effectiveness were taking a toll on her mood. The smile she carried with her for so long was being replaced by a look of wincing from pain. Her happy demeanor was being drained and replaced by feelings of simply surviving or existing. Long-term pain was draining her energy and stripping away her ability to remain positive or optimistic about the possibility that one day she may find relief.

Meanwhile, back in the present day

While we are still working through the ever-worsening migraines, we have found ways to keep each other positive when it is needed. As often as it is possible, we now make it a point to get out of the house for at least a little while (an hour or two).

Because we have been together for almost eight years, I have learned very well what her tells are when she is feeling bad along with the tells she presents with just before things get bad. It allows me to think proactively and do things like grabbing an ice pack for her head or neck or grabbing an extra throw blanket for her and telling her to lay down and rest (sometimes she has to be reminded).

Migraine caregivers: cherish the good moments

My wife is a fighter. That has never changed even through the worst of her migraines. But overall, suffering from chronic daily migraines for such a long time has robbed her of both her youth and her joy. It has stolen her smile and left her wondering if or when things might get better, and taken away her excitement about what the future may hold.

My advice to other caregivers is this. Pay attention to the little things and learn to cherish them. They may be all your loved one has the energy to show or do. Pay attention to the big things because you may be the one that has to explain them to the doctor on the bad days. Keep track of the good days, not the days that did not work out. Finally, on the days when your loved one has run completely out of positivity or faith, learn to have enough of both for each of you.

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 (13)
  • MllePHX
    1 week ago

    Great article. I’ll forward it to my long suffering yet staunchly empathetic husband whose life and career has been impacted by migraine.
    We’ve known each other for 20yrs; married for 10yrs. I had a migraine during our wedding, actually.
    After a decade + of chronic migraines, one does feel as if one “exists”. We become spectators in life, instead of participants. For me, chronic migraine took away everything, but hope (admittedly, even hope is fleeting during an intense migraine episode). Despite it all, my husband has been there for me.

  • John1381
    2 weeks ago

    That’s a lovely article Steven, I hope it helps you too. It mirrors mine and my wifes situation, although roles reversed.

    I wish you both the very best.

    John.

  • Brian in TN
    2 weeks ago

    I loved everything you wrote, but I hope you left something out: time you set aside for yourself. I’ve been fighting chronic daily migraines for over 20 years now with little success and my wife of 38 years has been an absolute saint in her support of me, but the time she spent away from me, having fun with her friends, was one of our best investments. Seeing your loved ones suffer because of your pain produces guilt that can only be understood through experience. Dedicating every waking minute to someone suffering can be a recipe for disaster. Please remember to love yourself as much as you clearly love your wife.

  • petmigraine
    2 weeks ago

    Thank you for sharing your story ! It’s great to hear a caregiver’s perspective 🙂 Hugs to you for being such a wonderful supporter~

  • rtmoran
    2 weeks ago

    Thank you for being the supportive husband your wife needs and for your sharing. It touched home very deeply.
    PS: for those who leave comments, please remember to keep them in context. We do not give advice, especially after the beautiful sharing article such as the one by the caregiver. There is no one size fits all answer to migraines, be it diet, meds, etc, anyone can speak correctly, although well intended. No solution will work for all. Please respect that someone else’s story is uniquely his or her own and when advice is asked for that is the time to share ours, in context.

  • Cutmyhead
    2 weeks ago

    Many thank you’s Mr. Workman for 2 things:
    1st. For the genuine loving and understanding help that you give to your wife and
    2nd. For reminding everyone that stories like your wife’s or mine or those of many of the daily or almost daily chronic migraneur are real and how deteriorating they are.
    I still fight with my own old very capable self, and feel very depressed to realize that so far my improvement with Aimovig is “just a little” and not “a lot”. I’m still hoping for better times..

  • tjayinoz
    2 weeks ago

    What a lucky Migraineur to have such an empathetic and caring spouse. No wonder she’s been able to remain positive and upbeat for so long. To the spouse; can I borrow you to train mine please????

  • mboykin
    2 weeks ago

    I really wish my ex-husband was as understanding as you. You have described my life in regard to your wife. Except my migraines didn’t come on into 2016. Me and my husband were married for 12 1/2 years. Now it’s 2018 and we are finalizing our divorce. He couldn’t handle my chronic pain. He got verbally abusive and very distant and demanding. With all the pain I was in, I just couldn’t deal with it. I moved across several states back home to be with my family and my positive support system.

  • Deb
    2 weeks ago

    What a beautiful, compassionate article! All that you have described, are certainly moments we all as migraine suffers have endured, however, some of us are not as fortunate to have a caring, loving, supportive spouse, who understands that it’s not “ all in our heads”, and does not put blame on their suffering spouse!
    I hope you both continue to fight the fight!♥️

  • Codybone
    2 weeks ago

    I know exactly how your wife is feeling because I am going through the same thing. I have never asked my husband how he feels but I can only imagine from what you have said. I am no longer able to work because of the migraines. I have tries the new drug Aimovig and it gave me three days migraine free so far in a month. I have been on it for about four months. I take whatever days I can get. Stay positive and maybe one day they will find a cure.

  • CobyMeg
    2 weeks ago

    How long before the Aimovig worked? I just had my second lot. No effect yet.

  • NeillK.
    2 weeks ago

    It’s wonderful to see a caregiver as compassionate as you. I have had all the same experience with migraine and it drains you, your family and spouse. I tried botox it worked but had to discontinue due to severe side effects.

  • maggiemayrocks1956
    2 weeks ago

    The caregiver in this article sounds as loving, patient and caring as my husband. I also have chronic migraines even though I am on Botox now which has decreased my migraines from daily to weekly.
    Thank -you to all the caregivers out there!

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