The Ins and Outs of Intractable Migraine
Last updated: September 2022
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.
Have you experienced Intractable migraine?
In the past year, has insurance made it difficult to get your migraine treatment?