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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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Chronic Daily Headache Prevention: Why is it so Difficult?

puzzle“I’ve tried everything and nothing helps my chronic daily headaches.” How many times have you uttered something similar? A HealthTalk Q & A gives some common reasons why:

  1. Medication overuse (rebound) headaches
  2. Failure to treat a co-existing medical condition such as depression or a sleep disorder
  3. Unrecognized medication-induced headaches, such as might occur from cholesterol drugs, proton-pump inhibitors for GERD, and anti-depressants
  4. Failure to investigate the possibility of relatively rare causes of headaches such as abnormalities at the base of the skull and top of the spine (craniocervical junction), intracranial hypotension (low-pressure headache), sinus abnormalities, and food or environmental allergies

Sadly, none of these reasons explain my chronic daily headaches. How about you?

photo by Erik Araujo

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Is Chronic Daily Headache Easier to Live With Than Migraine?

calendarSometimes I think coping with chronic daily headache is easier than with migraine. I have both but lately have focused on migraine in life and on this blog. Time to remedy that.

Predictability is in chronic daily headache’s favor. I wake up each morning with some degree of headache. Sometimes it will be a full-blown migraine, but often it is mild to moderate. Knowing what to expect somehow makes it easier to anticipate and enjoy the low-pain days.

The shadow of a potential strike is always with people with less frequent migraine episodes or other headache disorders. Hart, whose migraines visit an average of once a month, thinks five or six times each day that one is coming on.

I never know if my chronic daily headache is just getting a little worse or if the building pain is an imminent migraine. Not having visual auras and having hard-to-pin-down warning symptoms is part of the problem. Still, I don’t check for a migraine throughout the day. Or maybe I do and just don’t realize it.

Chronic daily headache is not as well-known as migraine and is often dismissed by doctors as attention-seeking or exaggerated claims. Friends and family can wonder the same thing. Patients themselves are perhaps the most concerned. Maybe they’ve done something wrong or haven’t been a good enough patient. The guilt and self-doubt can be overwhelming.

My original thesis for this post is that living with chronic daily headache is easier than with migraine. After letting my thoughts flow through my fingers, I’ve proven myself wrong. Rating them may be impossible. They are both life-altering and miserable. The Pollyanna in me says they both have positive aspects too. You know, all the cliches: I’m a better person for it, I live life more fully, I’m more in touch with my body.

I end this post thinking that chronic daily headache may be harder for me. Maybe I resent it more than I do migraine. Anyone with chronic daily headache and spikes of severe pain, migraine or not, do you have a “preference”?

Paula Kamen writes about chronic daily headache on the New York Times migraine blog. Leaving the Rabbit Hole, her latest post, is an eye-opener. Be sure to check out her radio interview too.

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Living From the Heart

Since yoga class yesterday, I have been in a terrific mood, even when my pain was bad. I’m loving the warmth of the shining sun, listening to music so loud that I can’t hear myself sing, admiring the pure happiness of the neighborhood kids.

My yoga teacher talks about living from the heart rather than always being led by your mind. We are guided to surrender our thoughts to the “heart center” (essentially your spirit or soul). While I agree with this idea in theory, believing in it is different than feeling it.

I spend too much time in my head. I’m a thinker who obsesses easily and am extraordinarily self-critical. The life changes of having a chronic illness have intensified and increased the frequency of all these thoughts.

Being in my head is not only in my mind, but in my brain. It literally directs one of the most prominent aspects of my life—chronic daily headaches and migraines. Living from the heart means thinking and obsessing less, but also keeping my illness from controlling my life. [insert raucous laughter here]

When I’m guided to send kind, supportive messages to myself, I give demands couched as encouragement: “Be nice to yourself,” “Worry less about if you’re a good person,” “Approach everyone with love.” Yesterday I unwittingly replaced these judgments with “Honey, honey, come and dance with me.”*

I got it. My heart invited my mind to celebrate with it. Love widely, be compassionate to yourself and others, care for others without neglecting yourself, accept who you are. It was an incredible feeling. The message was so clear that I haven’t thought about it much; I have simply lived from the heart.

*Maybe I should be concerned that lyrics from a Dave Matthews Band
song popped to mind while meditating. The song, Everyday, was originally written about the 1993 assassination of Chris Hani, the leader of the South African Communist Party who fought against the apartheid government. It’s all about love. I’m good with that.

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Teenagers With Chronic Daily Headache or Migraine Have Greater Suicide Risk

Young teenagers with chronic daily headache, particularly migraine with aura, have a six times greater risk of suicide than teens without headache disorders. This is according to a study in Taipei of 7,900 teenagers between the ages of 12 and 14.

From Medscape (you can get a password from BugMeNot):

“Young adolescents with chronic daily headache (CDH), particularly those who have migraines with aura, are at 6 times greater risk for suicide than their headache-free peers, new research suggests.”

“Individuals with migraine headaches were 3.5 times more likely to have a psychiatric disorder than those without migraine. In addition, the investigators found those who had migraine with aura were at even greater risk for psychiatric disorders and higher suicide risk.”

“Age and sex effects were also associated with increased risk for depressive disorders, but not anxiety disorders. Female subjects were more likely to have major depression than male participants (26% vs 7%). They were also much more likely than their male counterparts to have any type of depressive disorder (37% vs 10%).”

It’s scary news, but as someone who had migraine and chronic daily headache and depression as a teenager, I’m not surprised. If you have a child with a headache disorder or are an adult with one, please take a look at these important notes:

Chronic daily headache is defined as 15 or more headache days per month. Even if your child doesn’t have a headache or migraine every single day, he or she could have chronic daily headache.

While being sad, frustrated or anxious are common emotions for people with chronic illness, they can also be indicators of a psychiatric disorder. Depression or anxiety are real, serious physiological disorders that
many headache sufferers also have
. Psychiatric and headache disorders are often referred to as comorbid conditions.

Headaches and nausea are the most obvious symptoms of migraine, but migraines can also cause many other symptoms. These include mental confusion, trouble understanding and finding words, irritability, hyperactivity, sweating and sighing. Such little-known symptoms can be as debilitating and disturbing as the pain.

Adults with migraine also have a higher risk of suicide than people without
. This graph* is shocking.

If you are feeling suicidal, please call a hotline for help. In the US call 1-800-273-TALK (8255) or 1-800-SUICIDE (784-2433). If you live anywhere else, check this list of international suicide prevention hotlines.

*The site with the graph is no longer loading. I know it’s a reputable site, so I’m keeping the link in thinking that the site will magically regenerate.