How to Know if You Are Suffering From Intractable Migraine

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I just want to clean and fill the bird bath, fill the feeders, and do a little weeding today, but this is day 22 of an intractable migraine.

I confess I find myself humbled to recall what it feels like to experience all of “this” for so long, and I have certainly been through longer (as I know many of you have), but, fortunately, it’s been a long time since my last.

However, now waking up day after day, not wanting to lift my head from the pillow to know whether I’m going to suffer another day of unrelenting pain, inability to focus or concentrate, inability to come up with basic language, feeling queasy, not knowing whether or not to take any of my medications or at what point I’ve subjected myself to rebound headache—most of all, not knowing where to next turn, I have grown weary, teary, and irritable, and have basically shut down in many ways.

This attack started like any of mine, with my typical warning signs and triggers. I first took my Diclofenac and Zofran for nausea and put on my Cefaly for an hour. When that treatment didn’t work, I took Ubrelvy, and then Trudhesa. As the pain moved up my neck to the right eye, and I developed pain in the trigger points at the back of my skull, I used ice on those points and moist heat on my neck.

By the end of the evening, I was in a full-blown attack, waking up the next morning with moderate pain, though lessened from the night before. Unfortunately, though, the cycle moved back and forth over the next days, and now, for the last 11 days, I’ve been in a full-blown, or nearly so, attack, managing to do only what has been, at most times of the day, absolutely necessary and only, then, so little. It was time to turn to the Medrol Dose Pack (a tapering steroid a patient can only take two or three times a year).

No social events, none of the outdoor or indoor jobs I’d been planning on doing for some time, no ability to really enjoy the summer. I could take some morning walks with my dog and neighbors with their dogs, but I had to cancel two full weeks of my personal training.

I have repeatedly been to my chiropractor, who typically gives me great results, to my physical therapist, and most recently to a new headache doctor, who gave me nerve blocks and Toradol at our first visit and my (as we learned a week overdue) Botox the next day. Of course, this alone may explain a lot, since, as I have written in earlier blog posts, most Botox migraine patients find that the treatment works best for nine weeks, and insurance only covers it for every 12.

With no relief for several days and none from the oral steroid, I went in for the IV protocol again last Friday. Three days later, I went back to repeat the IV protocol, had occipital and super-orbital nerve blocks, and Toradol, and am now starting another round of a different oral steroid.

Since I am writing today, clearly, I have some improvement, but the attack has surely not lifted—far from it.

I get a couple of hours where I can take a walk, but my concentration and ability to read are still not there. I still cannot bend down without that throbbing behind my eye. What’s next? Does any of this resemble your experience? Mind you, I fully recognize the wonderful medical care I’m getting, as well as realize that not everyone does.

Ironically, I've returned to the post to edit it, and in the intervening time, the migraine has become very close to "full-blown" again, just in the last hour and a half. So what is it that is happening?

What Is Intractable Migraine or “Status Migrainosus”?

It is a migraine attack that spins out of control and becomes difficult to treat. The reason why an individual attack of migraine develops into this is not exactly known. A trigger—or a combination of triggers—could cause a migraine attack to develop into status migrainosus, including

• Changes in medication
• Skipping meals
• Lack of sleep
• Stress

According to the American Migraine Foundation,

“the best way to reduce the chance of a migraine attack developing into status migrainosus is by beginning treatment at the first signs of an attack. Recognizing your prodrome, or 'preheadache,' symptoms can help alert you to take your prescribed acute treatment. The earlier you treat your attack, the more likely you are to stop it in its tracks or prevent it from getting out of control.”

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What Pain Acceptance Really Means

There are a lot of good reasons we tend not to take our rescue medications upon first detection of a possible migraine attack (many to do with the limited amounts of medications our insurance companies will provide each month). Nonetheless, once this one is over, I know that, at least for some time, I shall be turning to those treatments much sooner.

What Are the Symptoms of Status Migrainosus?

The Cleveland Clinic affirms that status migrainosus symptoms are the same as a typical migraine attack, such as

• Throbbing pain on one or both sides of the head
• Sensitivity to light or sound
• Nausea or vomiting
• Fatigue
• Difficulty concentrating or communicating

They note that status migrainosus can cause sleep loss and severe dehydration due to nausea and vomiting, so if a headache persists for more than 72 hours, it’s critical to seek care or use the plan you and your headache provider have developed.

How to Treat Status Migrainosus

If things are getting worse or you are unable to stay hydrated, you may need to consider a visit to an urgent care center or the emergency room to treat serious dehydration and relieve the pain. There, a doctor may prescribe a combination of treatments, typically administered through an IV, all of which may include:

• Nonsteroidal anti-inflammatory drugs (NSAIDs)
• Triptans or dihydroergotamine
• Fluids
• Antinausea medications
• Magnesium
• Steroids
• Nerve blocks

The Clinic notes that your doctor may prescribe a combination of medications to be taken at home or refer you to an infusion clinic. Having these options could prevent you from needing to visit the hospital in the future.

A Final Point: Patience

I am now in day 22 of this attack, each morning expecting, hoping desperately, to wake up feeling that “lift,” and each morning I don’t, despite my doctors’ and my best efforts, my patience runs just a little thinner, the tears are closer to the surface, and my frustration for all I cannot do grows. I’ve lost nearly all of July.

I know this one will end—at least the rational part of me does.