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Chronic Migraine Rule #12: Always Bring Ear Plugs

  • Talking
  • Gum popping
  • Feet shuffling
  • Two TVs blaring
  • Pagers beeping & vibrating against tables
  • Six people typing
  • Dialing on speakerphone
  • Phones ringing
  • Printers printing
  • Automatic doors clunking
  • An automatic stapler thunking
  • Sniffing

This is the cacophony I sat with for 45 minutes in a hospital waiting room this morning. The ear plugs that I always, always carry with me? Nope, not in my bag. Fortunately, I only had a migraine hangover, so I wasn’t as extra-super-sensitive as in the pain phase. Still, negotiating the world with migraine is hard enough without getting caught without necessary supplies. I restocked the ear plug supply in my bag immediately upon returning home.

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New Daily Persistent Headache Research News

New daily persistent headache (NDPH) is “rare” and “poorly understood;” there is “no known treatment for NDPH.” These statements, which are from abstracts of two studies that were presented at the American Headache Society’s conference in June, succinctly capture the frustrations of people living with NDPH. These studies provide some insight into NDPH.

Characteristics & Precipitating Factors of NDPH

An examination of patients with NDPH at Stanford’s headache clinic revealed some interesting details about the characteristics of NDPH:

  • Patients most often described the pain as pressure-like and in the front of the head
  • 75% said the pain was on both sides of the head (not one-sided, like migraine commonly is)
  • 69% had migraine-like features to their headaches (46% of those had photophobia, 46% had phonophobia, 37% had nausea)
  • 17% had a history of episodic migraine or another headache disorder prior to the NDPH diagnosis
  • 53% had a family history of headaches

In addition, 75% of patients could identify an event or illness that immediately preceded the headache’s onset:

  • 48% had an infection (usually viral)
  • 26% had undergone recent surgery
  • 7.4% had physical trauma
  • 7.4% had psychological stress
  • 11% had another precipitating event

This research is important to both understand NDPH better and to help classify whether it is a primary or secondary headache disorder, which can influence how it is treated.

Botox for NDPH

Perhaps more interesting for people with NDPH is a study of Botox as an NDPH treatment. In this study, 22 patients received Botox injections and 95.4% percent had multiple rounds of injections. Following the injections:

  • 4.6% of patients had 21-30 headache-free days a month
  • 18.1% had 11-20 headache-free days a month
  • 9.1% had 0-10 headache-free days a month
  • 68.2% had no decrease in headache days

Researchers also looked at a reduction in pain severity.

  • 13.6% had a greater than 50% decrease in headache severity
  • 54.6% had less than a 50% decrease in headache severity
  • 31.8% had no change in headache severity

The numbers aren’t staggering, but 32% of patients did have at least some headache-free days with Botox. That’s not trivial for people who have received no other relief.

This was a small retrospective study. It’s results point to the need for more research on Botox for NDPH.

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Sensory Overload: When Migraine Overwhelms the Senses

Though it is actually about sensory overload in autism, this short animation depicts perfectly what I feel when a migraine heightens my senses so that sights, sounds, smells or touch are overwhelming. I become as irritable as a hungry three-year-old and want to curl up in the fetal position and shut down.

This video shows why I carry earplugs (in a metal box with engraving that says “My cure for everything”!) and calming the constant visual barrage with TheraSpecs is so helpful for me. In fact, a woman who tried TheraSpecs for migraine relief said they were wonderful for her ADD — she felt like they gave her brain a rest. It is exciting to have a product that provides real, noticeable relief in people’s daily lives.

via Krulwich Wonders

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The Clock Goes TICK! TOCK!

“Breathe in deeply and exhale fully.” Inhale… Ugh, did that woman bathe in coconut sun oil? OK, Kerrie, focus. “Slowly move your head to the side on your out breath, inhale to center, exhale and move to the other side.” Whoa, that was quite the stabbing pain in my head. Every step the teacher takes sounds like Velcro peeling apart. Focus! “Inhale to center…” I wish this guy would stop sniffing. And the sun is so bright. “On your next exhalation…” TICK! TOCK! TICK! TOCK!

The clocks at my yoga studio are curious. Sometimes they are completely silent. Sometimes they demand I pay attention to their continual work. In reality, of course, the clocks tick at a perfectly consistent volume. Whether my brain is in migraine high alert determines if I hear them or not. Phonophobia is not subtle.

After a severe migraine yesterday, I spent today not knowing if I was being haunted by a hangover or if another migraine was coming on. Hearing TICK! TOCK! as I tried to settle into a yoga class this evening put an end to my questioning. Another migraine it is.

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Worst Sounds to Phonophobic Ears

Metal curtain rings sliding across the metal shower rod is the absolute worst sound when a migraine makes my ears ultra-sensitive to sound. My fingers clattering on the keyboard is pretty unpleasant, too.

What sounds make your ears cringe and head scream?