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“We’re dealing with two different illnesses”

Last week I got the pleasure—at last!—of meeting some of my longtime blogger friends. Most of the faces were familiar since I’ve seen most bloggers’ photos before, but it was lovely to at last interact in real life and in real time.

We had a handful of helpful, eye-opening conversations over the course of a couple days in Philadelphia. I’m constantly amazed at how much I’m learning about my disease, a disease I’ve lived with more than half my life. How can it be that I just learned that others experience nausea early in their migraine progression? I’d always assumed that everyone else, like me, only got sick to her stomach at the very end of the attack. I also learned that my beloved melt-away triptan drug, one I always saved for when I was feeling particularly nauseous, is not absorbed under the tongue—like any pill you’d swallow, it’s broken down 100% by the digestive system, meaning it won’t be any particular help if you’re about to throw up.

I could go on and on about what I learned, but I’ll wait for another blog for all that. What I’m thinking about today is a comment my friend Diana Lee made. (And excuse me here, Diana—I’m paraphrasing.) She said that what people (patients, doctors, caregivers, and even those who’ve never had migraine) need to realize is that we are dealing with two different illnesses here: episodic migraine and chronic migraine. Unfortunately, most of the patients in the room were, or were at one time, chronic migraineurs.

Treatment plans for chronic migraine are so different than those created for episodic migraine. Almost all the information out there focuses on the patient who gets a migraine attack once every couple of weeks, max. Guidelines about medication use, dosage, preventive care, etc., tend to be focused on people who do not live each and every day hyper-aware that they may be hit with a migraine attack. I know that my prescription triptan drug tells me to take a pill at the first sign of a migraine attack. If I did that, you guys, I’d be popping pills five, six days a week. Rare are the days that I don’t get the beginning twinges of a migraine or the hints of aura. Luckily I am in good enough shape now that there’s not always a full-blown migraine attack coming my way even if I feel the beginnings of one. When I do get a breakthrough migraine, however, I have to decide when to take my meds—is this one going to go away on its own or not? If I take drugs today and tomorrow, I’m done for the week—what will I do if I get a migraine a third day in a row? There are so many concerns and questions for those of us who deal with chronic migraine, and our disease patterns and concomitant treatments are markedly different than what episodic migraineurs have to contend with.

Do you think you have episodic migraine, chronic migraine, or neither? If you are a chronic migraineur, have you noticed how the medical community usually focuses on episodic migraine treatment instead of dealing with chronic migraine? Share your thoughts here.

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

  • Myth1977
    7 years ago

    This post stuck with me for some time because it is so true. I thought about it often and think it is like thinking when my migraines were monthly but around 6-ish they were a manageable medical condition. Like other medical conditions I have… asthma and hypothyrodism. Problematic at times, but manageable. Chronic migraines… are chronic pain and when it goes into chronic pain… all bets are off. The treatment is complex and pain treatment when chronic as we all know is oddly not nearly as effective or awesome as it is for temporary pain or infrequent pain. But also the conversations between people with episodic migraines and chronic become off… there is a leap in the experience of chronic migraines that one doesn’t get with episodic. You see these comments on social media all the time… ‘if you had a migraine you would not be on the computer.’ Or ‘you don’t understand the meaning of the word migraine if your updating your Facebook status with it’. I’m not offended by them, but I feel forced to repost those little posters and say ‘hey, this migraine sufferer works with migraines all the time… Facebook is a freaking walk in the park’ but what I do is explain your migraine isn’t mine, intensity levels vary, sometimes a partially treated migraine enables me to function and most of all when pain goes chronic so do many of the options one has to deal with that pain in the ways you might want to. So yeah ‘functioning’ at work with a migraine, at various intensities isn’t my idea of fun and games but I don’t have the choice either. I can’t call in sick Every day can I? Must save those for horrific migraine days. So if I remark on something via social media, or blog about it, with a migraine have no doubts that migraine is there. Have one now in fact… triptan didn’t really resolve it. But we have adapted to cope with pain levels in so many aspects of our lives or we wouldn’t have a life and wouldn’t be doing anything. Sometimes the only interactions I get are online because I can’t socialize in real life… where it is bright and loud and too much energy is used to deal with the pain. But… would I have done any of that in the past with a migraine… hell no. Why would I inflict that on myself? (ironically enough I could treat every migraine then… and so many now have to be untreated… there is something so wrong about that) Until it became this normal state of affairs. So chronic migraines just a different beast altogether. A cruel chronic beast that is coped with more than treated.

  • Mylene Somers
    8 years ago

    I have suffered from Migraines since I was a young teenager and I am now on topiromate and a genreic form of imitrex which does nothing. The generic form of Imitrex actually causes me to have heart palpitations and vomiting and dizziness among other issues. but My insurance will not cover the Imtrex now that the generic is here. They claim the Generics are the same yet they are not I am severly allergic to many of the fillers in these generics and I belive that this is a major issue for me. but try to get the insurance people to believe this even with doctors letters. 🙁 I just plain suffer.

  • Becky DuBose
    8 years ago

    I know this is probably an old question but how long after you ingest or are exposed to a trigger can you expect a headache? I am new to this and still trying to identify dietary triggers.

  • Teri Robert
    8 years ago

    Up to 48 hours.

  • Sally Heckman
    8 years ago

    I never get h/A’s — just visual distubances that come and go suddenly and without prediction with unknown triggers — maybe they are TIA’s who knows?

  • Jadette Ellison
    8 years ago

    See an optometrist first, preferably one with several years experience, or one who does retinal photography. An optometrist can always refer you to an ophthalmologist. Ophthalmologists are surgeons; optometrists can do almost every thing you need, depending on the regulations in your state, while being less expensive. Source: Me. I’ve been an optician for four years.

  • Julie Jordan Stiles
    8 years ago

    You needto see an ophthalmologist, NOT optomitrist. Could be migraine or a retinal issue or vascular issue too.

  • Sandra Dietlein
    8 years ago

    Perhaps Opthamalic Migraines? My dad had those, and I’ve had them a few times.

  • Susan Cleveland
    8 years ago

    My insurance only approves one refill a month of Imatrex. That’s only nine pills, which never is enough. I can relate with what you said about the amount of pills you’d be popping if you took them at the twinges of every attack. But that’s the only time they are effective, at the beginning. My neurologist scolded me for taking them as often as I do, but when I explain the rebound effect of taking otc analgesics, he didn’t have an alternative for me. Topomax worked well for my sister, but I could not take it because the side effects were horrible.

  • Andrea Thomas Krohn
    8 years ago

    You said the exact same things I was asking my neurologist about just Thursday. My head hurts 5-6 days a week. What do I do when I have already used my triptans for the week? He didn’t have a good answer for me. He increased my Botox dose, hoping that it won’t wear off as early this time. That still left me in the middle of an 8 day migraine with no idea how to get relief. Finally, he gave me a prescription for prednisone to help decrease the inflammation, but I left the appointment disappointed and skeptical about my treatment.

  • Andrea Thomas Krohn
    8 years ago

    None of the medications have helped one bit for me. I don’t know if you have looked into Botox, or if it would help you, but it is the only thing that has actually reduced the frequency of my headaches. You may want to ask your doctors about it.

  • Benice Shaw
    8 years ago

    Your family sounds exactly like mine. Everyone has migraines. My son and I and my mother are chronic migraine sufferers and the rest of the family are episodic. I have seen 5 neurologists and numerous doctors to no avail. I find I have to watch my triggers. if they stack up I am in trouble. This summer has been the worse so far with the heat and humidity. I keep looking for answers through diet and natural medicine because the preventative drugs have not helped at all.

  • Andrea Thomas Krohn
    8 years ago

    Every female (and a couple of males) on my mom’s side of the family has migraines. I honestly think mine are genetic, because I remember having bad headaches as far back as 8 years old. Over the years, things have made them worse. Right now, I have identified neck tension, strong smells, bright lights, and abrupt weather changes as major headache triggers. A lot of women have them at different times through their menstrual cycle, but mine never really fit that pattern. Food preservatives, artificial sweeteners, caffeine, aged cheeses, nuts, and alcohol are common triggers for people, as well.

  • Alicja Sanders George Siek
    8 years ago

    I can’t imagine being in your shoes. I know you always post about the subject, but is there a cause for your migraines? Just curious…… I have a few friends that have the same problem but don’t know why they get them.

  • LipiGesic Migraine Relief
    8 years ago

    This is what we love about the internet and blogging! You have such a fantastic and supportive community here! We just wanted to stop by and thank you for all that you do!

  • Anne Fink
    8 years ago

    I love this post! I couldn’t agree more!

  • Victoria Clark Runyon
    8 years ago

    Like the other posters, I am a chronic migraine, but a very atypical chronic migraine. I haven’t had them my whole life. They came on after an injury Fall of 2009. It has been very hard to get help for the pain because everyone assumes I’ve been overusing acute medications but the acute medications don’t even make the pain go away completely so most the time I just go to bed instead. The sad thing is you can’t live like that.

    I finally got a good doctor who I trust and she’s started me on botox injections. The first round of botox seems to have cut the pain in half, when layered on top of the preventatives and used with a migraine(less) diet. I hope the next round of botox will finally bring me out of status migrainosis. I’ve been there in since about late January of this year.

    Yes, clinicians who only understand how to treat patients with episodic migraine disorders are a huge problem because they have no idea what to do when someone like me walks through the door. They think I’m doing something to make myself sick when I’m am desperately trying my hardest to do whatever they tell me to so I can get well…even when it makes me sicker and doesn’t work!

  • Victoria Clark Runyon
    8 years ago

    Yes, they are.

  • EmiLee G Mann
    8 years ago

    Migraines are the worse. 🙁

  • Tracy Brooks
    8 years ago

    I can relate to both your comments and posts and my story is similar….My question is what is a chronic migraine sufferer to do? I have had docs who told me that they “found it hard to believe that I have a migraine daily”……OH REALLY! Any information would be a great help.

  • Laurie Ashmore Epting
    8 years ago

    I am def chronic. Rare is the day I am not in pain. I’m on my fifth Neuro now – finally I have a doc who understands the magnitude of my disease and is rabidly committed to helping me. So, for that, I am so grateful. Having said that, my previous docs did treat it more as episodic despite seeing my calendars chock full of migraine day circles!

  • Laurie Ashmore Epting
    8 years ago

    Thanks ladies!

  • Lauren Doster Gonzales
    8 years ago

    Im praying for you girl! You are such a Beautiful Women and you are so Strong! I am and will continue to pray for some relief 🙂

  • Laurie Ashmore Epting
    8 years ago

    I am going to David Hammett MD at Columbia Medical on Trenholm Rd. I am now doing alternating Botox injections and nerve block injections every 6-8 weeks. Still on preventives and doc has prescribed much stronger abortives. So glad to hear you are doing better! Hope all is well w your family also!

  • Kathy Hodges New
    8 years ago

    I hope that you find some relief soon. I have gotten much improvement lately. Somewhere between chronic and episodic. What neuro are you going to now?

  • Christine Nordstrom
    8 years ago

    all I know is that I am a chronic migraine sufferer and this is day one and a half off a 4 day migraine and 98 % of my migraines come upon my waking up and I can’t take them anymore. they hurt so bad that I can’t even take myself to the emergency room. they stop my life dead in it’s tracks. magnesium was my miracle drug for 4 months I didn’t have a migraine when I started taking that, I ran out, tried a different brand and my migraines came back full force. I don’t know if it’s because of the different brand or the summer? or what but I can’t take it anymore. I saw a neurologist, dr. Bell in olympia who is also a headache specialist who did absolutely nothing for me but give me topamax and said sorry that is all I can do for you. he should never be a doctor. he’s ridiculous. my new doctor doesn’t seem to take migraines seriously. I have no insurance and so I lay in bed for the entire time of my migraine praying continually. I don’t eat, I try to drink water and continue taking my blood pressure and diabetes medication but I just throw it up anyway. I know I have the same story as thousands of people, but the months of June and July have been a blurr because they’ve been spent in bed in a very dark room praying for my head pain to go away and I am now starting to get a slight headache and I’m paranoid to go to bed now fearing I will wake up with a migraine. I pray for every single one of us who suffer from these horrible life altering painful migraines and I’m so glad to have found you & this website. thank you, & God bless. :0) I really truly don’t want to go to bed because I just feel I will wake up with a migraine. I have 3 to 4 days of a migraine then 1 to 2 days off, then another 3 to 4 day migraines, and this is day 2 off now, so the whole thing should be starting all over and I just can’t help but feel panicked. but, I can’t stay up for the next 4 days, so if it’s going to happen, it’s going to happen. good night my fellow migrainsters and thanks for letting me share! :0)

  • Mariel Moya
    8 years ago

    YOUR STORY IS SO MUCH LIKE MINE! MY DR. GAVE ME TOPAMAX THE ONLY GOOD THING ABOUT THAT I WAS LOOSING WEIGHT! BUT I JUST WANT THESE HEADACHES TO GO AWAY!!

  • Maureen
    8 years ago

    The problem I have is that and also that the Dr’s don’t really think this is a big deal. It so affects everything I do say or feel. Somedays you just want to sit and cry but that makes it worse. Lol. I understand what you mean by just learning things. I am 43 and have had them all long as I can really remember and didn’t know anything really until this site. I wonder at times how many people don’t even know that is what they have. I also wonder why dr’s are so clueless sometimes about this .

  • Christina the Bookworm
    8 years ago

    Yes, Yes, Yes! You summed up the feeling of being a chronic migraineur so well. “Living every day hyper-aware”… “Rare are the days I don’t get the beginning twinges” I labor over every twinge, ache and throb looking/waiting for those symptoms that mean this is a day that “deserves” the medication.

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