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Migraines don’t have to be chronic to impact your life

Most of the migraineurs I interact with in my day-to-day “real” life aren’t chronic migraineurs.  Rather, they are patients who have been diagnosed with migraine but don’t have fifteen or more headache days a month—so technically they have episodic migraine, not chronic.  (I’m not diagnosing anyone online, mind you—I’m basing these words on what migraineurs tell me of their own diagnoses.)

Most of the migraineurs I interact with in my online life as “The Migraine Girl” are chronic migraineurs. That is not to say that most of you reading this are chronic—it’s just that, anecdotally speaking, many of you who comment and interact with me here, on Facebook, and on Twitter are those who have some kind of migraine or headache more than half the time.

Once in a very blue moon, I’ll notice that a chronic migraineur will inadvertently demean an episodic migraineur by suggesting, however innocently, that those with episodic migraine aren’t “real” migraine patients.  On the other hand, in even rarer instances I have seen someone with infrequent migraine attacks bait others by suggesting that maybe the reported frequency of migraine for some is, well, inflated or exaggerated.

Let the record state that all of us are in this together, no matter our specific migraine diagnosis. 

Let the record state that those with episodic migraine also deal with fear of the next attack.  

Even rare attacks can wreak havoc on a patient’s life.  Those who confide in us, their fellow community members, to say that they have a headache and/or migraine every single day should be trusted—they know their bodies.

Recently I encountered an acquaintance who pulled me aside at work and asked if we could talk about migraine for a minute. This guy is in his mid- to late twenties, I’d guess, and said that he could feel that his time for a migraine was coming soon.  As I recall, he said he gets them about twice a year, usually when the weather first starts to change in the spring and again in the late fall.  He has medication to treat them and is very in tune with his body (so can usually tell when the migraine is coming), but he still struck me as profoundly disturbed by the illness.  He is genuinely nervous about the next inevitable attack.

He, like many people, threw out the whole “Oh-but-I-don’t-have-them-like-you-do,” which isn’t helpful for anyone—it belittles his experience and puts on display an unnecessary competition between us for who has it worse.  That’s not what supporting each other is about.
I thought he was going to ask me for advice, as people often do, but instead he just wanted to talk it out a little bit.  We talked about scent triggers and weather changes, about auras and treatments.  The conversation only lasted about five minutes, but I think it was really helpful to us both.

While it’s true that I get many more migraine attacks than my buddy does, it’s not true that I can’t understand his pain and frustration, and it’s not true that he can’t empathize with me.

After all, I am here to testify that even we who are not chronic migraineurs are can have lives that are seriously impacted by these attacks.

I’m curious to hear from you all—caregivers and patients (chronic and episodic alike). How has your perspective changed since being on this site and learning about the different ways people’s  migraine patterns affect them?

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

  • Merri
    4 years ago

    I was diagnosed over 30 years ago.

    It has always just been referred to as “migraine”, so I’ve never really thought of the condition as either chronic or episodic. (The subject hasn’t even come up for many years, because I have so many drug allergies, and have experienced severe shortness of breath from one I *could* take -it worked like a miracle, but scared me so badly, I disposed of the remaining doses).
    Some meds, such as Demerol simply do nothing.

    I usually refer to it as “random” and/or “weather related”. When I experience any type of aura, or feel the weather changing, I can usually get (eventual) relief from a combination I am not allergic to, acetaminophen with codeine for pain, and Gravol for nausea. If I am at home I have the luxury of actually laying down with an ice pack and lavender.

    However, when I awake with a migraine in full bloom, it becomes a struggle to cope, and I never know how long the episode will last. This occurs often enough that I could not possibly call in sick every time, so I must suffer the nightmare of getting through the day(s) at work, smiling through the pain, and trying with all my might not to barf or cry on customers and coworkers.
    I would not wish a migraine, of ANY type, on ANYone. They are all horrible.

  • 4 years ago

    I discovered this site earlier this year and it has been such an encouragement to me. I have had migraines since I was a teenager and am now 42. I began treatment many years ago with different neurologists, but finally found a wonderful migraine specialist. However, she is even stumped and has referred me for a consultation with a colleague. I do Botox injections every three months; I take 10mg lisinopryl every day as well. At night I take 1mg lorazapam to sleep – I have such a terrible time sleeping and if I don’t sleep well, I get a migraine. I have gone through all the triptans – some didn’t work, some worked for a while. I have just been prescribed “midrin” (it’s actually the combination of the three meds that were in midrin). It’s supposed to make me relaxed, but instead makes me anxious. It seems that I can’t find a medicine that works for attacks.About every other month I end up in the ER with a “status” migraine that usually goes on for a week or so… frustrated, but pushing on!

  • mermadelove
    4 years ago

    I have chronic migraine, Luckily, it is pretty well controlled at this point, Still I feel like some of the people closest to me don’t understand. My partner and my best friend mad comments recently both about me and another chronic migraineur that left me saddened, flabbergasted and defensive. Without going into detail, let’s just say that it impacts my personal relationships, makes me feel even worse about having to cancel plans, or even mention when I’m having a migraine. Just because my two daily medications happen to work to keep my headache and migraine days to about 7-10 a month so I can work, etc doesn’t mean that those who can’t are fakers. I don’t CHOOSE to have this and the fact that those 7 to 10 days are inconvenient for those around me really breaks my heart.

  • The Migraine Girl moderator author
    4 years ago

    Oh, mermadelove, I feel your physical and emotional anguish! Thanks for your thoughtful comment, and know that you have a community of friends here on the website who will validate your experience and be here for you when you need to vent.

    Take care,
    Janet G., “The Migraine Girl”

  • blue
    4 years ago

    I am blown away by the fact that people are able to pay enough attention to their bodies that they can tell when they feel the beginnings of migraines coming on. I am just so out of touch with “me” that I am nearly always taken by surprise. Even when pain starts, I will say, “I need to take something,” yet forget all about it for a period of time until my mind comes out of where it’s been and I think, “Oh yeah, I need to take something.” That is probably a lot of why I don’t have such luck with triptans. Or I just maybe don’t respond. So when the migraine’s got me, I know it, but I am generally taken by surprise. It is a rare thing when I actually become aware of the early feelings. And then it’s usually that I mention them to someone who is also a migraineur and they tell me what’s going on. And I’ve had these things for as long as I can remember. Although I didn’t know what they were for a sadly, very long time.

  • The Migraine Girl moderator author
    4 years ago

    blue,

    I have periods like this, periods when I feel really out of tune with my body. The one thing that gets me totally in tune is regular mindfulness meditation practice–it helps with anxiety, stress, chronic pain management, and being more fully aware of one’s body and mind. I sound so new-agey but I promise it’s all research-based (and, in my case, anecdotally successful). When I am regularly doing mindfulness practice, I can notice the tiniest changes in my body and make adjustments as necessary to avoid, at least for a moment, migraine or arthritis discomfort. Here’s an article from Kerrie Smyres, one of many about the subject on our site: https://migraine.com/blog/common-misconceptions-about-mindfulness-and-meditation/

    Take care; I hope you’re feeling okay today.

    -Janet G., “The Migraine Girl”

  • RebekkaT84
    4 years ago

    Thank you for this great article. And for all the useful information on this website. I’ve been living in the US for about 4 yrs now and I’m beyond grateful to have found this community. My mom and grandmother are the only ones who truly understand what living with chronic and episodic migraines feels like – and by now I’m sure my husband understands, too. If it wasn’t for people like you, who share their experience with migraines, I would’ve given up hope. I luckily have medication that helps but the constant avoiding of triggers can be debilitating – let alone going through an attack. Thank you for sharing your stories – the community is what makes us stronger! Knowing that other people understand is priceless.

  • The Migraine Girl moderator author
    4 years ago

    Thank you for this thoughtful and well-written reply. I agree with you: finding a community of people with whom I can be open about my struggles (and successes) has changed my life for the better. I hope you’ll continue reading and participating, and I hope you’re feeling good today. 🙂

    -Janet G., “The Migraine Girl”

  • JanetH
    4 years ago

    Thanks for writing this. I get episodic migraines. I’ve had them since my 20s, but now that I’m approaching menopause, they are coming harder and faster, feels like. I don’t respond well to triptans. I am on Neurontin, which helps a lot with the aura, but I still have a lot of days where I feel like one is kinda perched on my shoulder (if that makes sense). I am functional, I can usually work through it. I had to increase the Neurontin, as I was having more vertigo and visual disturbance aura this spring. It seems to be helping that, at least. I wish I could find something to make them just STOP. I could see where having that aura frequently could make one debilitated.

  • The Migraine Girl moderator author
    4 years ago

    Hello, other Janet. 🙂

    I appreciate your comments. I, too, feel like a migraine is often “perched on my shoulder.” Well said. For some women, migraine improves after menopause (for others, it stays the same or gets worse). Fingers crossed you’re in that first camp.

    Take care; thanks for the feedback.

    -Janet G., “The Migraine Girl”

  • Maureen
    4 years ago

    I admit I’ve felt like my condition wasn’t quite bad enough to take some of the steps others have tried. I am in that twilight stage where my chronic migraine is managed enough to be in the frequent episodic range. But with the handful (literal) of medicines and supplements I take morning and evening everyday, there is no denying that migraine has a huge impact on my life. I have really enjoyed the 30 things articles, because they spelled out what you super migraineur bloggers deal with in specific ways. They have helped me realize that a trip to Jefferson Headache Clinic is not an over-reaction. I am “sick enough” even if those closest to me don’t really get that migraine is more than a headache.
    I feel better for having my internet voice heard. Thank you. I hope you all feel well today.

  • The Migraine Girl moderator author
    4 years ago

    In my long experience as a health advocate, I have talked to so many people who haven’t taken their conditions as seriously as they should because they know there are others who “have it worse.” I had hoped by publishing this article that more folks who are episodic migraineurs (or know someone who is) would realize that migraine can impact a sufferer’s life no matter how frequently attacks come up. I appreciate your comment so much and am so grateful you’re a part of this community. Thank you, and please keep me updated with how you’re feeling.

    Take care,
    Janet G., “The Migraine Girl”

  • steelheadzlisa
    4 years ago

    I am a long time lurker on the site. For most of the last 23 years I’ve been episodic with just a few periods of time on the verge of being chronic. This site has been such a huge blessing for me. Between learning about new methods of dealing with attacks to realizing that I am NOT alone in this journey. Seeing the impact chronic migraine has had on some of you and the daily struggle has helped me to be more compassionate to myself. Several of you are in near constant pain yet still manage to share your journey to help others. I spent a lot of years downplaying the impact of this disease to others. Now I feel empowered to stand up for myself and be honest about how this disease effects me. From December to March of this year my number of headache days continued to escalate into chronic territory so it was back to the doctor to try something new. Back on a daily preventative now and only having 2-3 attacks each month now. Accepting that this disease is not going away is probably half the battle for me. Thank you all for sharing your experiences with us. Not being alone is a huge comfort.

  • Jenn Lebowitz
    4 years ago

    Hi steelheadzlisa,

    We are so happy you found this community. Thank you for sharing your thoughts and kind words. We are glad you’re here!

    Best,

    Jenn (Community Manager, Migraine.com)

  • Lisa Robin Benson moderator
    4 years ago

    Hi Janet,
    Excellent article. As I’ve been both chronic and episodic I can agree that either way, migraine is migraine and can definitely impact your life! Even now that I only get a few every month I must keep to many lifestyle changes and take medication. And when I get one, it’s usually not as severe as when I was chronic, but that’s just me. Many episodic people I talk to have incredibly severe migraine. I believe migraine is a spectrum disorder, like autism, and all forms are important. It’s also important to have empathy for others and not “compete” over symptoms.
    You touch on so many important points. Thank you!
    Lisa

  • The Migraine Girl moderator author
    4 years ago

    Thanks for the kind words, Lisa.

  • zippy36
    4 years ago

    I am very happy to have this site. It has been so informative. I have learned so much not only from the articles but also from the comments. This is my safe place when I feel that no one understands. Thank you for all your hard work keeping this site up and running. I have learned so much.

  • The Migraine Girl moderator author
    4 years ago

    Thanks for this kind comment, smkirchdoerfer! We are happy you are here.

  • The Migraine Girl moderator author
    4 years ago

    zippy36,

    It warms my heart to hear that this is a safe place for you–I feel the same way. Thanks for being a part of this community!

    -Janet G., “The Migraine Girl”

  • Sas
    4 years ago

    Over the past 3 years I have reversed the migraine pattern from 1 week per month migraine-free to 1 week per month with migraine.
    I have noticed that a combination of a fast and a slow triptan not only keep this week’s migraine under control, but also have a positive effect for the next 1 – 2 months. Other things that seem to have longer-term effects are extra magnesium and gluten-free diet.

  • The Migraine Girl moderator author
    4 years ago

    Sas,

    I’m so pleased to hear you’ve been so successful in treating your migraine. That’s always wonderful to hear. Can you clarify what you mean by “a combination of a fast and a slow triptan”? I’m curious to learn more about that.

    Take care,
    Janet G., “The Migraine Girl”

  • Tammy Rome
    4 years ago

    My father has episodic migraine. He didn’t have an attack for two years, then last fall he got one a work that was so bad, his boss called 911 because Dad couldn’t communicate and it looked like a stroke. That one attack put him in bed for almost 3 days. He’s almost 70 so the risk for stroke is very high. It scared us all and we are used to Dad having about 2 attacks per year.

  • The Migraine Girl moderator author
    4 years ago

    Oh, I can imagine that he, you, and his colleagues were all very worried. My dad is already 70 years old and little ailments that used to be no big deal now worry me even though he’s in fine health. I hope your dad doesn’t have another attack for a long time (if ever)!

    -Janet

  • LadyJ856
    4 years ago

    I’ll admit that I’ve been hesitant to join the conversations as I have episodic migraines. However, when I have one, it may last up to 7 days from prodome to the “hangover.” Many of my triggers are out of my control, others I need to adhere to my boundaries. I sometimes have to miss full or half days from work. Other times, I may be present in body but not in mind. No one in my family understands because no one in my family has my type of migraine. Even my daughter, who has had migraines since childhood; thankfully at this time they usually are controlled by OTC meds. She also knows how to completely relax when not at work – something I’ve not yet learned although I’m 28 years older than her.
    Even though my migraines are episodic, I learn so much from what others share on this site and have recommended it to my neurologist, his staff, and others suffering from this disease.
    Today’s post by Janet reminds me of something I’ve heard in therapy. My trauma is different than every one else’s, but we all have the many of the same reactions and thoughts as a result. No one’s is worse than anyone else’s. So it is with migraines. Thanks Janet!!!

  • The Migraine Girl moderator author
    4 years ago

    kangi,

    Thank you for sharing your story. I can only imagine how hard it must be to continue searching for treatment when you’ve been suffering for so long. Acceptance of the illness goes such a long way toward coping in a more healthy way–I applaud you. Thanks for sharing your story, and let us know if you have any more stories to tell about the hospital-based chronic migraine pain clinic!

    -Janet G.

  • The Migraine Girl moderator author
    4 years ago

    I have a feeling that there are many community members here who are “lurkers,” people who read articles but don’t participate for a variety of reasons–and one of those reasons might be that the chronic migraine questions and comments sometimes seem more dominant, so it’s harder for an episodic patient to speak up. But I am so happy you commented today and hope you’ll continue being a part of the conversation. I also like what you shared about your daughter teaching you things about how to relax–she sounds so smart.

    Your therapy quote is pretty great, too. I’m happy to meet you (virtually), LadyJ856!

    -Janet G., “The Migraine Girl”

  • kangi
    4 years ago

    I’m 73 and have had migraines all my adult life. I have 10 to 15 a month and have tried everything out there I believe, and have had everything suggested to me including trying a different bra size!I currently am under the excellent care of a hospital-based chronic migraine pain clinic. I finally learned to accept my condition, have compassion and understanding for those who cannot understand me(what it is like to have my condition)and by sympathetic for others who are in pain of a different or lesser magnitude. The hardest thing for me to cope with is the pre-dromal and post-dromal stages; how a migraine is a “stealth” artist!

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