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The Ins and Outs of Intractable Migraine

What It Is: Intractable migraine, also called refractory migraine and/or status migrainosus, is the medical term used to describe a persistent migraine that is either 1) difficult to treat or b) fails to respond to standard and/or aggressive treatments. In general, it’s a migraine that simply doesn’t go away, regardless of treatment.

What It Feels Like: Intractable migraine is relentless and seems to never end. You wake up with it. You go to sleep with it. It’s there all day. The pain levels associated with it, however, may not be constant. The symptoms generally are not either.

When I had my last intractable migraine, some days would be full of vertigo, nausea, and vision disturbances. Other days would be relatively symptom-free (other than the constant pain). In general, my pain tended to lessen over night (to about a level 3 or 4 out of 10), and increase over the day (often to a 7, 8 or even 9). When I was blessed with a lesser-pain day (say 5 – 7), I tended to get sharp ice-pick stabs throughout the day that were significantly more painful than the underlying pain. My disability level ranged from mild to severe, depending on the number of symptoms present and the magnitude of the pain.


As with any other migraine attack, an intractable one will be different for everyone who experiences it. This is one of the reasons they are so difficult to treat. If you have an intractable period, it will likely look very different from mine.

How Long It Lasts: Unfortunately, there’s no way to tell. Mine tend to run in about two-year-long cycles. (So far, I’ve had two – ten years apart.) In All In My Head, author Paula Kamen describes an intractable pain that lasted 15 years. Some people likely have intractable periods that last for a much shorter period of time

Who Gets It: Any migraineur can theoretically get an intractable attack

How It Is Treated: If you have intractable migraine, you’ll likely be given a long, long list of things to try to break the cycle. When I first went for treatment for mine, my neurologist tried a five-day triptan regimen. When that didn’t work, we tried a vast array of preventatives, including anti-seizure medications, blood pressure medications, anti-depressants, and allergy medications, as well as intra-muscular shots. Eventually, I went to a headache specialist near me and underwent three days of out-patient IV treatments, some of which were experimental. When that didn’t work, they considered hospitalization, but I turned out to be allergic to the drug they would have used in the hospital. I also tried nerve blocks.

Lifestyle changes are also a major factor in treating the intractable migraine. It helps to eliminate as many triggers as possible and to reduce stress to the lowest possible level. By doing this, you give the treatments a better chance of working.

What Finally Terminates It: This will be different for everyone. For some migraineurs, a particular treatment will finally work and the cycle will break. I usually just have to wait until the migraine decides to let go, which seems to be after about two years pass.

What To Do If You Have It: If your migraine doesn’t respond to treatment, you may want to expand your options. Look into treatments you haven’t tried offered by doctors you haven’t seen. (Read Who Works with Migraine? for ideas.) You may also want to see a headache specialist, if you aren’t seeing one already. Some people find that the reason their pain is intractable is because their diagnosis was wrong. A headache specialist should be able to ensure your diagnosis is correct and verify that you are treating the problem correctly. Because of the emotional and mental difficulties associated with the condition, I also suggest you read my next article on surviving life with intractable migraine.

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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

  • Megankdonnelly
    9 months ago

    Thank you for this. I’m in a status migraine over two months. Hoping it breaks soon! I have faith. Question : did you take abortives during status? It seems none of the abortives help so I am questioning.

    Second question : one day I had relief for an hour and then it came back. Otherwise been constant. This is still status correct? That is what the headache clinic I see diagnosed me with but I was surprised it went to zero briefly. Thank you.

  • mcadwell
    1 year ago

    My first migraine was when I turned 33. I’d get several per week for several years and the doctors couldn’t tell me what caused them. I had to have several tests, which all came back normal and did a food diary but food didn’t seem to be the culprit. I was given an Rx of Imitrex.

    After a 3 day migraine I ended up in the ER because the Imitrex wasn’t doing anything. They gave me Zomig. MY MIGRAINE WAS GONE! Exhausted, but alive, I went home feeling better. After being home an hour…one measly hour…my throat started closing up and I couldn’t breathe. Back to the ER I went. Anyway, after several more hours I was finally able to go home migraine free. To this day, when I get a migraine I get nervous that I might end up in the ER again.

    One day my chiropractor took neck x-rays and found some tiny bone spurs. Turns out I had arthritis in my neck and the bone spurs were pressing on some nerves. I’m 51 now. I still get migraines but not as often nor as intense (hope I didn’t just jinx things!) The spurs seem to have grown past the nerves so their sides interact with them but not the pointy ends.

    Anyway, I have since been Dx’d with RA so if any of you can’t figure out the migraine cause, have a very close look at your x-rays to see if tine bone spurs are the cause.

  • Sarah Hackley moderator author
    1 year ago

    Thank you for sharing your story with us. I was recently diagnosed with RA, too, but it doesn’t seem to impact migraine in that way for me. However, my neurologist asked for cervical x-rays years ago to make sure nothing like that was happening and I think it’s always worth the look so thanks for the tip! I hope you’re doing well today. 🙂

  • 28npng1
    4 years ago

    Up until 2-4-15 I didn’t know you could have an intractable migraine. I’m 54 I’ve had migraines since I was 16. If I tried dozens of med over the years I’m that (special, difficult don’t what to do with you person)I’m not trouble I’m just either allergic or it doesn’t work it’s been 38yrs with HA/migraines so I’ve run the gamut of tests & med tried everything my ins would cover. Spent 5 days in the hospital getting brutal 5 DHE that didn’t work I had 4 neurologist, 1 neurosurgeon & many pain mgt Dr’s telling me to get botox. My ins wouldn’t pay for it after my discharge from the hospital was to go to a sleep clinic & a Head & neck clinic 150 miles away. I had lost 6lbs in 5wks approx I had a sweet nurse tell me to take my care into my own hands I didn’t know I could call the ins co. I just happened to open a denial from the ins co about the botox so I called them explained what I had been thru what they wanted to do next they put a 72hr review on it I called Thurs by Fri they agreed to try the botox here 1st. I was 7days with a migraine after they did the botox I slept all that nite & pretty much that next day it’s been 8 days w/o a migraine, I can’t remember a time I’ve gone this long w/o a migraine. It may not work for everyone you may be that “special” case but take your health into your own hands it’s totally worth a try. I’m eating again I’m out of the bed I’m happy I wish that for you all.

  • Gemma Joyce moderator
    4 years ago

    Hi 28npng1,

    Thank you so much for sharing your story with us. It is encouraging and inspiring to read that by advocating for yourself you were able to access the treatment your doctors recommended. I am so glad that you have had 8 days without a migraine and been able to get up and eat – such wonderful news! I also find Botox very helpful and have experienced a progressive improvement in frequency and severity with each round.

    Wishing you continued success with your treatment,

    Gemma

  • 28npng1
    4 years ago

    Sorry I meant to say that I had an intractable migraine for 71 days

  • brooklyn214
    4 years ago

    Glad to see someone write about this. I had an intractable migraine that lasted 4 1/2 months (last May to late August). I have had migraines since childhood but they had gotten worse in recent years. I just turned 47. One day, I started having pain in my neck and sides and back of my head that kept moving around. I had a weird feeling that I couldn’t see properly. Wasn’t dizzy but felt off. I didn’t have a normal migraine. My first neurologist said it was “inflammation” and put me on a high dose anti-inflammatory. I was also incredibly nauseated at all times. My usual combo of Arthrotec and Maxalt did not work. I had an MRI, which was clean. I couldn’t work or tend to my son for that time period. I changed neurologists and they tried everything to stop it: torodol, high dose magnesium, Botox, nerve blocks, b12 shots, a course of steroids, a muscle relaxant, Lidocaine patches. The pain in my neck was unbearable. I was exhausted but couldn’t sleep. My eyes felt like there was sand in them. I was depressed and anxious and took Ativan. I thought I was never going to get out of it. Went to a chiropractor and an acupuncturist. I lost 10 pounds. I was a complete wreck. Injectible Imitrex worked best for me at that time. I started Nortriptyline and used Cefaly. Somehow they lessened and I got back to my baseline. I continue to do Botox every few months, go to an acupuncturist, switched to Imitrex tablets, use the Cefaly and exercise. I stopped the Nortriptyline recently. I get about 3-5 a week. Some are bad; some are manageable. My biggest fear is that this will happen again. I am petrified of that. I am going to see an Endocrinologist to see if it is due to perimenopause. Thank you for posting this piece. So glad to see I was/am not alone.

  • mrst53
    5 years ago

    I have been in a migraine thing, I think since February. I have been dizzy and feeling like my body gets to places before my head does. that’s weird. Then I got a headache that went thru from one temple to the other, it felt like a sword. I also had a headache in the back of by neck that went from side to the other. Nothing I had on hand would touch it, until I tried using some Lidicaine patches on my head and neck at night. My eyes also hurt. My headache has lasted almost a month. I have not been able to read a book or watch too much tv or bee on the computer. I had an CT scan of my head with contrast and had the blazing headache at the time and they said nothing showed up- I don’t see how, I thought my head would explode when the dye when in. So much for ct scans. I have an appointment on my headache specialist on Thursday. I am surprised at the injectable drugs some of you are given to use for your headaches. My docs only give me Frova and Fiorinal. No mention of injectable drugs. I asked for something the other day and the doc refused that’s when I turned to the Lidacaine. I hope this week’s visit will be better. I have to drive an hour and half to get to this doc. It better be good.

  • reasings
    5 years ago

    Approximately 2 years in this current state…this site is so comforting for me. Just knowing that I am not alone with these struggles.

  • Marina1990
    9 months ago

    Hi, do you still have the migraine to this day?

  • Lynn Voedisch
    5 years ago

    When I had a migraine that went on for more than a week and wouldn’t respond to any medication, my migraine doctor put me in the hospital for continuous IV treatments of the ergotamine-based drug (forgot the actual name). It worked, but I was stuck in the hospital for five days.

  • Maggie H.
    5 years ago

    Ditto to mmjardel from me! I have had migraines since an auto accident in 1984 – back then, there was so much less info on them, so I suffered thru so many types for so many years. Finally, the hemiplegic one was identified by a chiropractor! This doctor has been my “go to person” now for years before I go to the hard meds! Like you, I have no pain free days and the so called “normal” people either don’t believe that’s possible, or they don’t understand, (and possibly don’t really care). I have changed my life style, given up every food that I either suspect or know triggers the headaches, and try daily to educate myself on these horrible attacks. Like most of the posts on this site, I feel not understood, and sometimes alienated, even though I don’t ever complain (I was taught not to ever complain), so I withdraw because I seldom know when an attack will come or if I will be exposed to a trigger and have no escape. This is the first time I’ve seen this type migraine actually identified and now it will be easier to deal with because I know I’m not alone with it and it at least has an identity! Like Holly, it is good to see that somebody cycles out, so now I have hope of my present one doing so – it’s been with me now for almost 6 weeks, and I’m so tired of it! It’s just reassuring to know that there are others of you who have the same symptoms, so at least there is someone who understands my pain! Thank you to all of you on this site.

  • mmjardel
    5 years ago

    Wow, thank you so much for describing this. I am 3.5 years into a intractable. Have seen two head pain specialists and had three spinal procedures. No one seems to understand I have ZERO NADA absolutely No pain free days. On top of this I have the daily clusters and hemeplegic migraine 3-4X a month. Yeah and my aura is complete blindness – drivers license is medically revoked. I can’t wait for your next article about how to live with this stuff. My last work day was 3 years ago because of this I lost my job. I have SSDI hearing April 1 praying for some financial relief even if there isn’t physical relief on the horizon. Im sorry others are suffering with this too and at the same time relieved to know I’m not alone and this IS real.

  • Marina1990
    9 months ago

    Hi, do you still have the migraine to this day?

  • Holly H.
    5 years ago

    After 5 years of constant, and the last 2 of those years being intractable, I was so glad to see that someone after so long a time period cycled out of the intractable migraine – I didn’t know that was a possibility. For me, lifestyle changes were necessary because of going into stroke-like neurological events, and that the longer this goes on, so does ever-increasing trigger sensitivity. Since “nothing more can be done” (at least that insurance will pay for, and I am unable to self-pay), the fact that you cycled out gives hope!

  • Dursoc
    5 years ago

    I have made significant improvements with my migraines over the last 2 years — with a very rigorous understanding and adherence to lifestyle changes; of which you all are aware can be many.
    Over the last year they have decreased from 3-4 per week to once per month.
    However, this last week I experienced what I see here is called the “intractable migraine”. It lasted an entire week and the symptoms were all over the map, with the constant overwhelming pain and vomiting day and night. I looked back over my diary and considered anything that may have set this off. I know that sometimes there really is no clear answer, but I can’t help but look. The one thing that had changed was I had stopped doing my daily saline nasal rinse. I know this sounds crazy and maybe even impossible for such a small thing to cause such a horrible week long migraine, but I do always have major face, jaw and neck pain with migraines; so maybe the nasal passages are somehow involved. Anyway, I started the nasal rinse again in the morning and by the following morning, after doing it 3 times; the migraine was gone. Again, I realize this might all be coincidence but I wanted to share in the off chance it could be helpful to anyone else.

  • bluebird
    5 years ago

    I’ve been recently diagnosed with confusional migraine. I had been chronic/basilar/brainstem with aura/ .Now I have been told what I have is a more general cortical problem and less of a brainstem problem. My symptoms used to be more “dramatic” but the dailiness continues with a daily worsening around 3-4 pm and an apparent sensitivity to rapid low barometric changes.

    Seems intractable in that all the rx has not worked well. Some gaba helps restless legs and keeps pain tolerable. I have been told not to use amerge .
    My specialist has retired. I am told there are so many genes involved and unfortunately we have tried everything. ugh. No botox no cefaly- but everything else.
    Cheerful acceptance and getting on -making the best of it and being grateful for good hours works most of the time. But not all of the time. I get tired of feeling subject to an erratic beastly thing that seems to be here to stay.
    Is this intractable? Pain is not the overwheoming problem now altho I am so used to
    “coping” I often have to take my bood presure to know just how much pain I’m in. Or look in the mirror. or see my asymmetric bumbling as I walk.

  • Jodygo
    5 years ago

    Wow, this is the first time I have seen it spelled out almost exactly as it is for me. Right now I’m a year and a half into the cycle, and I’m exhausted! Haven’t been able to work for nearly six months, and I’ve essentially been a hermit for all this time. Strangely enough, the idea that it might be something that simply runs its course is actually a bit comforting. After all the things we have tried to nip this thing in the bud, it’s good to know that it might just peter out on its own. But, for heaven’s sake, WHEN???

  • migrainestl
    5 years ago

    TNmigGal, I was going to ask the same thing. I’ve been chronic for 3 years w/ a 4mo break at the end of my pregnancy. Outpatient DHE infusion type therapy hasn’t helped. My daily avg is a 4, I’m generally better in the mornings & progressively worse as day goes on w/ spikes about 3x/wk up to 6/7. I’ve tried 3 diets, 12 preventatives, Botox, Cefaly…I’m still searching.

  • TNmigGal
    5 years ago

    What is the difference between intractable migraine and chronic migraine? I am almost 7 years into a constant cycle with maybe 1-2 days a month with no pain. I have previously had a ‘cycle’ broken with DHE in-hospital regimen and went mostly migraine free for a whole year. But this 7 year cycle has not been broken by that or other attempts. Daily pain is a 3-4 with spike up to 7-9 about 6 times a month (and other symptoms). Is there a difference in how neurologists / doctors / headache specialists treat intractable vs. chronic? Thanks for any information.

  • kristisprague
    5 years ago

    I have a similar question. My Neurologist/Head Pain Specialist has my diagnosis as Intractable Chronic Daily Migraine with Myalgia. I have head pain everyday-migraine. I take preventatives, rescue meds for severe migraine and have significantly altered my diet and lifestyle. So, I am wondering if I have had Intractable Migraine for 10 years or just some of that time. In the end, maybe it doesn’t matter too much. I don’t know that treatments would be altered. Kristi

  • Tammy Rome
    5 years ago

    Chronic Migraine is 15 or more headache days, but only 8 of them have to be migraine in order to meet the criteria. With Chronic Migraine, you do have pain-free times, but those days are often spent in prodrome or the dreaded postdrome “hangover”.

    For example, I have been diagnosed with Chronic Migraine as I typically get between 10-12 migraine attacks, plus 5-10 Cluster Headache attacks each month. Botox is bringing that down a lot, though. When I do get attacks (even before Botox), they do respond to Amerge. On the rare occasion that Amerge doesn’t work, Toradol shots usually do.

    With intractable headache, Amerge wouldn’t help and Botox isn’t as likely to work either. That’s the nasty problem — the pain is non-stop and not much helps.

    Does that help?

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