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Holding on to Hope With Chronic Migraine

A diagnosis of chronic migraine can seem like a life sentence. As the days drag on, it feels like migraine attacks are a permanent fixture and that you will never again function like a normal human being. Despite the fact that people go from chronic to episodic migraine all the time, it’s easy to lose hope. Many of us lose hope and regain it over and over again. I certainly have. But it’s not just having chronic migraine that causes us to lose hope, it’s a confluence of factors. Here are some of the reasons we lose hope… and some of the reasons why it’s worth fighting to regain it.

There are many different treatments for migraine. That’s both good and bad. There’s always something new to try, but you might try multiple ineffective treatments before finding the right one for you. This is discouraging, especially when you desperately want each new treatment to be “the one.” But it’s also a reason for hope; the next one you try could turn out to be exactly what you need or at least one component of a collection of effective treatments.

Even when there are still many alternatives available, some of us have had doctors tell us we’re out of options. That particular doctor may not know what treatments to try next—that does not mean there’s no effective treatment for you, just that the doctor is at the end of their knowledge. Instead of encouraging a person to see another doctor, like a headache specialist, some save face by blaming the patient. And sometimes a patient hears, “there’s no help for you,” when the doctor is trying to say that the patient would be better off with a specialized doctor who has more knowledge in the area.

The people with intractable chronic migraine also tend to have the loudest voices. Most patient advocates have chronic migraine (that’s what made us advocates in the first place) and many stop writing about migraine once they’ve found a treatment that’s effective for them. The same goes for the most vocal forum and support group participants. They’re seeking connection because they need help. Once they get their treatment sorted out, they move on. I don’t blame anyone for wanting to put all things migraine behind them. Still, it skews the perspective, making chronic migraine appear to be nearly impossible to treat.

Then there are the dismal facts about migraine research. It’s horribly underfunded and we absolutely need more money for quality research. What gets lost in that is that there are continual developments in the understanding and treatment of migraine. They pace is far to slow given the number of people who have migraine and how disabling it can be, but they’re still happening. And it’s not just in new drugs or devices that still have to go through FDA approval. There are discoveries about the usefulness of old drugs, too.

“It won’t always be this bad,” my husband told me countless times. It seemed impossible that he was right. He was. My migraine attacks have been less of a burden in the last year than they were in my adult life up to then. I’ve moved from assuming an attack will always come along, to being surprised and frustrated when it interrupts my day. All the symptoms that I thought would be with me forever—extreme sensitivity to sensory input, pretty much every odor triggering a migraine, feeling like my intelligence was gone—have already decreased and continue to lessen. The phrase “hang in there” might seem dismissive, but I’ve found it to be excellent advice. It’s exactly what I’ve done all these years—sometimes when holding on was all I could do. And now I feel like I have my life back again.

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

  • DMac82
    4 years ago

    I’m glad you found relied, Kerrie. What medication(s) has been effective for you?

  • Ellen H
    4 years ago

    I have had migraines/headache pain every single day of my life as far back as I can remember, which was around nine years of age. We have literally tried everything. And everyday I wake up with pain, my face hurts, it feels like someone has is crushing my cheek bones. I am now some six decades old, and I never have hope that things will change, because it would be unbearable to hope for change that has never come for six decades. And yes, I have a migraine neurologist, and yes, we have tried everything. People come from out of state to see this guy. There is no one left to see. So, I do not hope for change; it would be unbearable to do so. This is my reality.

  • Silvia
    4 years ago

    silvia

  • Silvia
    4 years ago

    Migraines totally under control if I avoid these foods:
    concentrated whey or soy protein, gelatin, commercial broth of any kind, disodium guanylate, disodium inosinate (which can be up to about 90% MSG, anything with extra added protein, pretty much any kind of commercial soup regardless of contents — it’s the heat used in making the soup that changes the protein molecules into glutamate. Also anything with aspartame or gelatin – including breath mints, gum, vitamins, etc.
    It was hard to diagnose because it takes 15 hours after eating for me to begin to experience the migraine.
    If you have a food sensitivity you must read ALL labels, go in the kitchen in restaurants and ask them to haul out that 5 gallon jug of whatever.
    I’m down to having a migraine about once a year. I ate something by mistake. I backtrack as to what I ate the day before, and there it is — soy milk when they promised me it was “milk”, for instance.

  • marycr8on
    4 years ago

    I really needed to read this today. Last week I saw a new neurologist and got the same old, “I’m sorry there aren’t any options” line I’ve heard over and over. I’ve been living with migraine for over 35 years. I’ve seen specialists, tried so many different drugs and therapies, I’ve lost count. I am tired of Western Medicine and am starting to actually believe there is no hope for me. But I won’t quit I am looking at alternatives that none of the doctors have recommended, there just has to be something that’s been overlooked or untried out there. I’m trying hard to hold on, even if it’s just by my fingernails right now.

  • bluebird
    4 years ago

    I am encouraged to hear your story. My specialist has just retired. I had a second opinion at the Mayo 2 years ago. Brain stem Migraine with Aura (ruled out hemiplegic). They demonstrated significant asymmetrical hypo & hyper perfusion of my brain. Now I am Intractable Confusional Migraine. (OH MY)

    I know my disease must not define me but I have had 2 of the best specialists in the US tell me there is nothing more to do… at least not now. I do feel like I am at the end of the road and face bushwhacking my own trail. Every Nutritionist has ideas. If I could fund daily massage, acupuncture, and a Chinese herbalist..at least I would be kept busy feeling that something will help. But to date… I am dancing on the head of a pin.
    New specialist this month. Keep hoping the TMS unit will become available. Currently trying the Cefaly. I can’t say yet that it is helping migraine but it does cause me to stop and has helped me go to sleep.
    Grateful for all the good moments.
    The hardest part is the recurrent “feeling like my intelligence was gone”. Love the past tense…thanks for hanging in and sharing.

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