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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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A Cold? Nope, Migraine.

You know that cold that gave me brain fog and fatigue as bad as with my worst migraine attacks? It was migraine. While the mild cold lasted only a few days, I simultaneously developed a reaction to one of my “safe” foods (likely cauliflower). It was triggering migraines that were lower on the pain scale than usual since I’d restarted Ritalin as a preventive. Since I ate cauliflower daily, sometimes multiple times a day, I was in a pretty much perpetual migraine.

I’m getting it sorted out, but am also pushing to introduce new foods to my diet so this doesn’t happen again (it has also happened with coconut and butternut squash). That means more migraines as I find out what’s OK and what’s not and what rotation schedule my foods need to be on. It’s annoying and frustrating, but I’ve got a good plan in place and trust that if I’ve figured this out before, I can do it again.

I’ll probably be quieter than usual for a bit, since my mind isn’t cooperating with this writing thing right now. I am reading a ton, including lots of health-related non-fiction that I’m eager to tell you about. Take care of yourselves. I’ll be back soon.

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Diet Update: Beyond Frustration; Debilitating Chronic Migraine Looms

After my eagerness to meet with a dietician, you might have expected an update on how the appointment. I intended to write one. It was to be about the foods she recommends people with headache disorders avoid (histamine, tyramine and benzoates) and her interesting schedule for reintroducing foods. I was so excited to tell you all about it… until I tested my first food and the frustration returned threefold. Since then, I haven’t been able to talk — or even think — about my diet without crying.

Frustration is no longer even close to an adequate representation of my emotions. I can’t sort out if a food is a trigger or not, if my symptoms are connected to a particular food or to eating in general. I can’t tell if I would have gotten a migraine if I hadn’t eaten a certain food or not. I can’t identify how much of a role other triggers are playing in all of this. It’s like I’m constantly banging my head against the wall.

What I do know is that I always feel worse on days I test foods. That eating ANYTHING, even my “safe” foods of chicken breasts, white rice, and oats usually makes me feel worse. That the issue doesn’t seem to be certain foods, but food itself. My naturopath’s hypothesis that I have a inherited metabolic disorder is sounding more and more plausible. I won’t if that’s the case until I get the results of genetic tests. (Check out WebMD overview of inherited metabolic disorders for an excellent short introduction to the topic.)

I also know that I feel trapped. Trapped between getting good nutrition and feeling horrible all the time. Testing foods has already increased the frequency of my migraine attacks as well as the severity of all my symptoms. My head pain is back to a level 5 or even 6 almost daily. Violent bursts of nausea shock me out of sleep at night. My equilibrium is distorted enough that I have trouble standing up and walking straight. I’m weak and shaky. My knees occasionally collapse when I walk. The effects are mitigated somewhat by only testing foods every other day, but the severity of the symptom is steadily increasing. I wonder how much longer it will be before the drenching night sweats and nightmares, which accompany my severe nighttime migraine attacks, return.

I fear the enormity of the pain and discomfort that are creeping up, preparing to overtake me. Malnutrition appears to be the only way I can keep them at manageable levels, but that’s taking too great of a toll on the rest of my body. I don’t want to give my life back over to chronic migraine, but I can’t continue starving my body of nutrition.

Debilitating chronic migraine’s return appears imminent. It’s breaking my heart. These last few days, it feels like it’s breaking my spirit, as well.

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Apple’s iOS7 Could Worsen Migraine, Headache Symptoms

The zooming, sliding, parallax and other features of the new iPhone and iPad software could worsen your migraine or headache disorder symptoms. The British newspaper the Guardian reports that iOS 7 is making people with vestibular and some neurological disorders sicker. Unfortunately, I learned this firsthand when I upgraded my iPhone. The dizziness, nausea, and increased headache when I use my phone means I went from loving my phone and using it constantly, to no longer even wanting to look at it. And that’s after changing the accessibility settings to “reduced motion” (Settings > General > Accessibility > Reduce Motion).

If you haven’t upgraded yet, spend some time on someone else’s upgraded device before you commit to it on your own. Once you upgrade, there’s no going back! I was very careful to backup my phone before the upgrade, thinking I could restore it if I didn’t like the new operating system. When I tried to restore it, I discovered that iTunes forces the iOS7 upgrade along with the restore, thus rendering it an ineffective solution. Some Googling revealed that Apple no longer allows such downgrades.

If you’ve been made sick by the new animations on iOS 7, you can send a short email to accessibility@apple.com to explain which animations are problematic for you and request directions for disabling them. Or if you’ve decided not to upgrade because of the potential of worsening your symptoms, email them at that same address to request accessibility accommodations so you can use their software in the future.

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TheraSpecs Pilot: Stylish Aviator With a Curved Lens for Maximum Protection

I’m so excited to finally be able to announce that TheraSpecs Pilot, an aviator frame with a curved lens for maximum light protection, is now available. I’ve been wearing a prototype for months and love them so much that I’ve been dying to tell you about them!

Although Pilot looks like a classic aviator from the front, the lenses are curved for a wrap effect, so they block light really well. The golden metal alloy frame compliments the rosy hue of the TheraSpecs tint, plus it is very lightweight. Add in soft silicone nose pads and spring hinges and this eyewear is super comfortable in addition to looking great. Although aviators aren’t usually my style, I like Pilot so much that I wear them almost exclusively as my indoor frame.

Even better, we’re offering a 30% introductory discount off the regular price of $99 for indoors and $129 for outdoor polarized lenses. Order your Pilots this month and you’ll automatically receive the discount — that’s $69.30 for a pair of indoors and $90.30 for outdoors.

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