What is a “real” migraine?

What is a “real” migraine?

This topic comes up a lot. In fact, it got started at our house over Thanksgiving weekend when my husband got a migraine attack. At first he couldn’t concentrate or focus. His brain just wouldn’t engage. A few hours later he started flipping off light switches all over the house. He wasn’t in any pain, but he definitely wasn’t himself either. He complained about “wasting the day.” Several hours later he started yawning uncontrollably and stated that the yawns were painful and that he felt like he couldn’t yawn big enough. That’s when I finally spoke up.

“You are having a migraine attack.”

Confused from the migraine-induced brain fog, he argued, “But my head doesn’t hurt.”

“Yeah, I know. How many times do I have to tell you that migraine isn’t a headache? That might happen later, but you’re already having an attack.”

“Whatever…” he wandered off in a daze.

The next morning he complained that his neck was sore and stiff. I wasn’t surprised. “That migraine attack isn’t over. Does your head hurt yet?”

He thought about it for a minute. “It doesn’t feel right, but I wouldn’t say it hurts.”

Within an hour, the headache phase started. The pain was mild, but strong enough to be distracting. He was able to function, but certainly not as well as usual. The headache phase lasted for about 12 hours. The next morning, he was still struggling to work through the postdrome phase. He still couldn’t think clearly, needed a nap, and complained of neck stiffness. The whole process lasted a full three days.

No one else could tell that he was experiencing a migraine attack. If I wasn’t so well-educated about migraine, I would not have been able to identify the problem so early. You see, not all migraine attacks are severe enough to force patients into bed. Not everyone experiences nausea and vomiting. Some people are impaired in different ways. He has been diagnosed with episodic migraine without aura. His primary symptoms are cognitive impairment, neck stiffness, photophobia, and mild head pain.

I bet that some of you are thinking he doesn’t get “real” migraine attacks.

It’s understandable to question the veracity of someone’s claim when their experience does not match our own. For years he refused to admit that he was getting migraine attacks because his experiences were not as disabling as mine. I really had to push hard to convince him to talk to our doctor, track his attack frequency, and discover his triggers. When he finally relented, he was able to get good relief from sumatriptan. With my encouragement, he discovered that his primary triggers were caffeine, thunderstorms, and sleep irregularities. Now he does much better, averaging one or two attacks each month.

After witnessing some of my worst attacks, there is no way my husband would ever compare his version of migraine with mine…or yours, for that matter. Even with a confirmed diagnosis, he is still reluctant to admit he has migraine. He recognizes that no two migraineurs are alike. Some can function well enough to hide the symptoms from most people. Others must hide in the dark and rely on powerful painkillers. Everyone in our family is a migraineur. Storms and sleep problems are the only two common triggers we all share. None of us has exactly the same set of symptoms and we all have completely different treatment plans. If that can happen in one family, imagine the variations among all of us!

Let’s all remember we are part of the same family.  What are your unique symptoms? Do they change sometimes? What about your family members? How are their migraine symptoms different from yours? We all share the same hypersensitivity of our brains. That is where the similarity stops and diversity begins. Let’s embrace our differences.

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 (28)
  • Laura
    3 years ago

    My story! Lol, I ARGUED with the CRNP that diagnosed me with migraines. ATYPICAL MIGRAINES. “But my sister has migraines and mine are NOTHING like hers!”
    I got educated that day and together we realized I’d been having migraines since about the age of 13. I was 49 when that conversation took place and am 56 now and just got dairh piercings in February. My migraines have been chronic since 2013 and I had begun have persistent daily headaches in 2014. I was afraid to go the next step which was Botox. I’m 80-90% better now but still having migraines is I have more than one trigger to deal with so I also recently got a SPG block (totally painless.)

  • Sunni W
    3 years ago

    Hi Tammy,
    I’ve been having migraines since my early teens and the symptoms have changed over the years.(I’m 40 now). I’ve had MRI’s, CT scans, was diagnosed with classic while in my teens and just recently have added Aphalgic to the group. Now my teenage daughter is experiencing the same symptoms and has started the journey of a thousand doctors… We both share the sleeping problems, light aversion and scent triggers. It’s frustrating to try to explain to our GP that her symptoms mirror mine and him just say lets try this. I’ve asked to have her referred to a neuro so she can get a proper diagnosis. In the meantime I’ve shown her how she can alleviate some of the symptoms before a full blown attack. I’m currently on Frovatriptan but have noticed that during the last few attacks that they didn’t seem to work as well.
    I remember my first “silent” migraine. I thought I was having a stroke. the auras are slightly different with them than the classics. My classics are typical symptoms, light aversion,blind spots, dizziness, pressure, nausea, vomiting, neck stiffness…etc. but with the silent I also get numbness in my face and down my left arm and my BP goes up. Feels like tingling running through my skin when I touch it. You’re definitely right that all sufferers are different. My dad use to Black out from his.
    The yawning info was enlightening.. apparently I’ve discovered another aura. Thanks!

  • Meaghan Coneys moderator
    3 years ago

    Hi Sunni W,

    Thank you for your post. We are happy you are a part of our community here at Migraine.com! Thanks for sharing your experience with us. I am happy to hear that you related to the article, however am sorry to hear that both you and your daughter experience such debilitating migraine attacks. In your previous comment, you asked about methods to combat chronic migraine. I thought you (and your daughter) would find the following articles helpful – https://migraine.com/migraine-treatment/, https://migraine.com/blog/a-list-call-for-creature-comforts/. They provide treatment options for chronic migraine, along with self care tips to utilize while in the midst of an attack. Again, thank you for your post. Please continue to reach out to us here at Migraine.com whenever you need. We love hearing from you. Wishing you all the best.

    Warmly,

    Meaghan (Migraine.com Team)

  • Jojiieme
    3 years ago

    The comments are as useful as the article – thank you, everyone!
    I’m going through the fascinating exercise that’s called Educating HR on How One Can Continue To Work While Experiencing a Chronic Neurological Condition with Treatment Side Effects potentially as bad as the condition itself. Sigh. Thank heaven it’s a caring not-for-profit, and the work is part-time!
    It’s hard to shape a workplace health and safety policy when a worker’s symptoms keep changing, and sometimes you can work through the fog, the numbness, the altered realities you find yourself in and others times you just can’t. (Oh, that’s badly written. Sorry!) The legal implications can be huge, yet getting medical sign-off agreeing to fitness for work while also requiring flexible time off is difficult.

  • Susan C
    3 years ago

    Good luck. I worked for many months to get the special accommodations of working from home with a major telecom company. I was ultimately told “no” and laid off. 19 years with the company. 15 years of chronic migraine. The company would not budge at all and it cost me my job. At no point did I sense my condition was taken seriously. It is a complete shame given the Americans With Disabilities Act. I hope you are successful and enjoy a long and fulfilling career!

  • Tammy Rome author
    3 years ago

    You have quite a challenge before you. 🙂 Ultimately, it comes down to the word of the patient. Sometimes I can work just fine during an attack or need minimal accommodations (quiet, dark, etc.). But the unpredictable nature of the bad ones put me on disability because no employer would permit irregular hours and flexible deadlines. I simply couldn’t promise a minimum number of hours or guarantee I could meet a due date. Tricky, tricky your job is!

  • debij
    3 years ago

    I have Chronic Migraine with Aura, I have had migraines for over 20 years but they spike to 16-18 month when I had a partial hysterectomy in 2013. I do currently get botox and I have preventive meds. I try not to use my triptan injections more than twice a week since they can cause rebound headaches. My triggers were hard to figure out, but the weather is huge, I cannot have aged cheeses, spicy food and I know when the migraine is coming with the aura. My daughter who is 18 does get them occcasionally like I used to mostly menstrual migraines. I hope everyday that she does not have to experience what I go thru. I do have a supportive family who knows when I am having another migraine and they are very supportive of me.

  • Fiona
    3 years ago

    Thank you for your article. I know yawning is a prodrome but I’d never heard anyone say they felt like they just couldn’t yawn widely enough. That’s just how I feel! And when I get irritable for no good reason I know a migraine is on the way. I have to learn to take better care of myself when I’m having migraine without headache.

  • Sophiasmom
    3 years ago

    one caveat is that if you have not had a spinal tap to rule out intracranial hypertension, then you don’t know if it’s a real migraine or not. the headache pattern in IIHWOP (idiopathic intracranial hypertension without papilledema) can be identical to migraine. that brain fog feeling was a constant companion until I went into remission. I thought I had “migraines” all my life, since I was 8 years old too. but when the IIH went into remission, funny thing is I don’t get “migraines” anymore. most doctors think that if you don’t have optic nerve swelling then you can’t have intracranial hypertension. NOT true.

    for all of you thinking you have “real” migraines, have you had a spinal tap for opening pressure? if not, then you really don’t know. and your doctor doesn’t know, and shouldn’t be labeling you without ruling out IIHWOP.

  • wdjbaxter
    3 years ago

    Sorry, but I cannot reply to the person that replied to you.
    I almost always have an increase in head pain when I laying down. Which is sooooo frustrating when all you want to do is try and sleep. I find myself at times standing up in a trance like state staring at nothing because the pain is less.

  • Nicci
    3 years ago

    This is interesting, because I feel like this a lot… and my pain is worse when laying down — did you have that problem? I’ve read only snippets about intracranial hypertension. How is yours treated?

  • ripeka
    3 years ago

    Thanks for this post – I am 50 and started with my first migraine aged 8. For years, I put my various head pain down to bad headaches. It wasn’t until casually describing some of my symptoms to a doctor friend about 5 yrs ago, that she told me they sounded like migraines, and I needed to go talk to my doctor. Sure enough, he diagnosed migraine (both parents, one grandmother, one great-grandmother all got “bad heads” too!). I have been trying to educate myself and others around me ever since and this site has been wonderful. I get digestive disturbances, neck pain, strange head, extreme fatigue, irritability in the prodome phase. Usually, the head pain then wakes me at 4am when I get good relief from triptans and can sleep it off. These events average once per week and I know some of my triggers (gluten, almonds, irregular sleep, wine). However, in addition, I often get head pain during the day that is a lot more mild and I get good relief from using ibuprofen+codeine if taken early enough, so I tend to dismiss this head pain as just “bad headache”. Sometimes though, I will take OTC meds twice over a 12 hr period and the “bad headache” just keeps coming back. If I then take a triptan, I get almost instant relief and the head pain doesnt come back. It’s all rather weird, and I struggle to know what type of medication to take at what point. I guess that I must still be dismissing some of my migraines as “bad headaches” if taking a triptan ends up solving the head pain?

  • Nicci
    3 years ago

    You msy already know about this — it happened to me, too — medication overuse headache (MOH) which is a real Dx and very easy to have happen. For whatever reason, on my phone, I can’t paste URLs into this comment box. Google “medication overuse” and “Tapper” (the name of a doctor and researcher who writes about MOH). You’ll find lots. The 4am headache rings familiar as there’s a hypothesis that it’s approximately when the effects of your NSAID or triptan wears off. Just a thought. Not gonna tell you weaning off is easy… it’s not. But look into magnesium glycinate (chelated) by Pure Micronutrients… 600-800 in 200 MG doses daily literally saved my life with the night time headaches.

  • HK
    3 years ago

    I appreciated your article, Tammy, thanks for sharing. It reminded me that we experience migraines differently and that all symptoms should be respected as real. My migraine is so different from most that I find myself being careful when speaking with other migraneurs; almost justifying that it IS migraine. Armed with encouragement from the community I don’t think I need to do that any longer.

    I truly appreciate the perspective I gain when reading about others-from symptoms to treatments to frustrations. Thank you!

  • fuenkchen
    3 years ago

    This article totally hit home. My mum had headache, vomiting migraine from a very young age. I had headaches from when I was 11 never thought them to be migraines until the first time I was sick with it in my early 20. Now (42) they come frequently about once a month, or weekly if i do eat chocolate, cheese, if i lack sleep or if i’m stressed. My daughter who is 8 however was hit the worst. She was hospitalised with severe vomiting at the age of seven became severly malnourished until they had to give her artificial feeds, couldn’t keep those down either. She had no headache, just the vomiting that wouldn’t stop and couldn’t keep anything down at all. After 6 months of being severly underweight and many hospital stays, I came across abdominal migraines and managed to persuade a doctor to ditch the high fat diet and high calorie dairy feed and she is on sumatriptan when under acute attacks, on pizotifen and amitryptiline regularly. If I keep her away from any dairy, eggs or chocolate and get her to sleep very early, she gains weight and has no more vomiting. Give her a small piece of cake and she has an attack the next day. Her paternal grandmother suffers migraines too, so she seems to have inherited a double whammy. Apparently the headaches might start later. Has anyone else had experience with this in children?

  • Nicci
    3 years ago

    I have a friend whose son gets migraine similar to your daughter’s. This young boy does have pain, however. It’s severe, but not as bad… my heart hurts for her! I’m so thankful you were persistent. My friend advocated aggressively for her child, too. The broader medical community is woefully under-educated on migraine. Even many neuros just don’t have the professional time to learn this specialty intimately.

  • Megcolors
    3 years ago

    i get fevers, insomnia and sluggishness, but I also have severe and deabilitating pain. I have found if I take a OTC such as Exedrine Migraine in the fever phase, the pain phase is not as severe.

  • SleepyBri
    3 years ago

    One of my weird symptoms, the ones that stumped the docs, mimic arthritis. Joints swell, skin flushes and gets hot, blood work reads like severe inflammatory response. But it’s just part and parcel. I have classic migraine with aura, episodic. Just a few extra symptoms that the textbooks don’t talk about.

  • R Hoke
    3 years ago

    I have wondered if that is related. I get the same thing, but not with every migraine attack. It was a little weird for my doctors to diagnose me with arthritis at age 19, but it only acts up when I have a migraine with certain triggers.

  • Still Smiling
    3 years ago

    I love reading about how varied the migraines are just in your family. I myself have 3 different types of migraine pattern alone and some very odd pre-warning symptoms if I can spot them – trouble is, once I spot the symptoms I never know how soon to take my rescue meds and if I should leave it until as late as when the headache phase is upon me…
    Early warning signs include irritability for no reason, constant yawning without feeling tired, sore/stiff neck, sudden aversion (read aversion not incredibly sensitive that comes with the headache phase) to bright lights and loud noises, tinnitus, my cheeks, hands and feet go numb/really cold, my body temp will drop (even on a really hot summers day) and I’ll start shivering…and that’s before getting to the whole host of symptoms that goes along with the headache phase when it comes along!!…

  • Nicci
    3 years ago

    There is some conjecture that if you’re already experiencing light sensitivity and neck pain, then you are already into the pain phase… whether it’s screaming hot yet or not. What I have found is that the earlier I take the abortive, the less severe the symptoms and the shorter the postdrome (hangover). On New Years Eve, I got a cooker and didn’t take meds to avoid medication overuse headache (MOH) and the postdrome lasted 2 days! My neuro advocates ‘the earlier the better’. I 1,000% agree. You have enough prodrome Sx and are self-aware enough (awesome!) to time the meds before the photo phobia and neck pain, etc. Try it a few times… see what happens. I know we ALL want to wait and hope… and not waste mess if we have enough HA that we’re at risk for MOH, but it sounds like you’d really be able to nip it in the bud!

  • Tammy Rome author
    3 years ago

    Headache experts tell us that using abortives (triptans, OTC, etc.) at the very first sign of headache pain produces the best results (faster, more complete pain relief). I’ve tried taking meds earlier in the prodrome phase, but it doesn’t seem to work. However, I have found that when I am having a longer prodrome (8 hours or more), I can sometimes abort the process by using heat on my neck, cold on my head, and/or taking a nap. That prodrome phase is also my warning to slow down, avoid taking on new projects, and rescheduling appointments until after the migraine is completely done.

  • Jill M.
    3 years ago

    Thank you for a great article, Tammy! Very insightful on how not only migraine can differ from person to person but also how an individual can experience varying attacks.

  • selenawilson
    3 years ago

    Thank you so much! This is one of my hugest peeves- when other migraineurs judge someone else as “not a real migraineur” or “not as bad” as them based on frequency of attacks/severity of pain/whether an otc pain med or other remedy helps them.

    To a person suffering an attack, it doesn’t matter if their attack is “as bad” as yours or how frequently it happens- it’s suffering just the same, and we are the last who should judge another migraineur.

    My sister is high episodic, but OTCs knock her pain to a manageable level (no, it doesn’t stop the attack, but it helps). My son has maybe one attack a month with crippling pain and few other symptoms- his are sudden onset. He can’t take triptans and only prescription pain meds dent the pain. My nephew has abdominal migraines- no head pain. My daughter has had 2 migraines in her entire life. I have a friend who has silent migraines- no pain at all, but the other symptoms are disabling. I’m daily chronic with a long list of symptoms.

    Migraine runs a spectrum. We should never judge another based on our own symptoms or invalidate their experience.

  • Sunni W
    3 years ago

    When you say you’re a daily chronic do you mean you have headache pain every day?? If so I’m a member of your club. I try to avoid taking too much OTC’s because I don’t want MOH’s and so I’ve just resigned myself to live with the pain. Most days it’s just a dull ache until something triggers.
    What are some methods you use to combat them?

  • Nicci
    3 years ago

    Well said, you’re an angel! 🙂

  • fuenkchen
    3 years ago

    I just read that your nephew gets abdominal migraines. My daughter (8) gets them too, i commented her story above. Just wondered how he manages them?

  • bluebird
    3 years ago

    Thank you for the New Year’s reminder! So important for me to remember that no two episodes are exactly alike. But rapid barometric shifts is the strongest trigger of all. So confusing when I can’t tell if belly hurting is Migraine symptom or not… Trying to catch an episode early enough to use Spring TMS or triptan to disrupt it @ the beginning is frustrating. Irritable with difficulty thinking are the symptoms I like least of all. Hard to communicate with self and others. Spectrum disorder one day to the next. We all need to support the reality of our individual journeys so we can make sense of and cope with Migraine. Suppport each other and those in the Headache specialty who really care about us.

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