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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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Testing if Your DAO Level is Low

Yes, there’s a test that measures diamine oxidase (DAO) levels in the blood. No, it’s probably not worth your time or money to get it done. (Wondering what DAO is? Start reading here and follow the links at the bottom of that post for more information.)

There are two issues. The first is there’s no well-established range of DAO levels. There’s speculation and you’ll find ranges listed, but they aren’t yet backed by solid science. Also, it’s not known whether the amount of DAO in your blood is indicative of how much is in your gut, which is where it really matters.

Genetic testing can show if you have mutations in the genes related to DAO production, but not how much you actually produce. While the test confirmed that I probably make insufficient amounts of DAO, dietary research, an elimination diet and testing DAO supplements were more informative.

The best way to find out if you’re low in DAO is to try taking the supplement. You can get small a bottle of the highest strength DAO for about $30. If you’re going for a high dose, use Histamine Block rather than Histame. (The Amazon link defaults to the more expensive 60 capsule bottle. Click on “30 Easy-To-Swallow Vegetarian Capsules” in the box below the “in stock” notice to choose the less expensive bottle).

It took about a month of playing with the amount of DAO I took and how long before meals to take it before I hit on the right set up for me. The label recommends taking two no more than 15 minutes before every meal. I’ve found each capsule covers about 400 calories, though I take more if I’m eating a high-histamine food, like fish. I currently take it about 8 minutes before eating (or even drinking coffee or herbal tea) and am sure to finish eating within 45 minutes. As you’ve read, the change was drastic once I hit on the right combination.

This was while eating a low-histamine diet, which I recommend trying. Even if you don’t, read the list of high-histamine foods and take extra DAO when you eat them. (Some of those foods are also high in tyramine, which has long thought to be a migraine trigger. DAO does not help process tyramine and there is no digestive enzyme that claims to.)

The capsules are expensive (about $1 each), so I initially felt a lot of pressure to take no more than I absolutely needed. For the sake of dietary variety, I’ve relaxed a bit and now err on the side of too much with foods I’m uncertain about. Other than pocketbook pain, I have no noticeable side effects. I thought heartburn was an issue for a while, but that has resolved (it was likely due to reintroducing fat after going so many months on a very low fat diet). I’ve been reassured that DAO is safe and that any that’s unused gets flushed right out. That’s why you have to take it before every time you eat — it doesn’t stick around.

I know many of you are hoping that DAO will help you as much as it has me. If you do decide to try it, play around with dosing and when you take it. If you get any relief from it, it might be another addition to your treatment plan. Every little bit adds up.

Still have questions? Please ask them in the comments or email me at kerrie[at]thedailyheadache[dot]com and I’ll try to answer them.

Related posts:

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Diamine Oxidase (DAO) is Why I’m Doing Better

The Amazing Feat of a Normal Life prompted a lot of questions about why I’m feeling so much better. It’s still the digestive enzyme, diamine oxidase (DAO), that I started in January. (To learn more, read The Post I Never Thought I’d Get to Write and follow the links at the end for more details. If you want to try DAO yourself, you can get it through Amazon. Even though it’s called Histamine Block, it isn’t an antihistamine and doesn’t block histamine.)

I continue to follow a restricted diet, though that’s more about wanting to reintroduce foods slowly and methodically rather than any particular food being a problem. As long as I take DAO, I’m doing great with nearly every food I try (even dairy and wheat). I’ve even tried a few high-histamine foods (with a little extra DAO) and have done fine.

The other dietary change is that I’m eating most foods on a rotating schedule, leaving two or three days between each time I eat a particular food. I began this when I developed an intolerance to coconut after eating it multiple times a day for months without a problem. This has been a very effective way to vary my diet.

It’s a slow process, but I’m getting almost complete nutrition from the foods I eat (I’m still a little low on calcium). I eat mostly vegetables, though I have salmon a couple times a week and am currently testing eggs and milk.

That’s it. I’m past the three-month placebo window and continue to feel better than I ever thought possible. I know DAO is an unconventional migraine treatment. I know the science behind it is weak. I also know it’s working better for me than anything else I’ve ever tried.

Related posts:

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Let-Down Headaches & Migraines

Have you ever gotten through a super-stressful time without a headache or migraine only to be knocked out by one when the stress lets up? Although this is a pretty common phenomenon among people with headache disorders, the evidence has mostly been anecdotal. In a study published in the journal Neurology today, researchers found that a person’s risk of getting a migraine is nearly five times higher in the first six hours after stress lets up and this let-down effect lasts up to 24 hours.

No one knows exactly what’s happening biologically to cause this to happen, but one possible explanation is that a person’s cortisol levels increase during stress. This hormone reduces pain and helps to shield you from a migraine or headache. Cortisol levels drop when the stress is released and so does its protective effects.

Read more about the study and recommendations for avoiding let-down headaches, in my post on Migraine.com, Stress & Let-Down Migraines.

(The study was specifically on migraine, but people with other types of headache disorders have told me they experience let-down headaches as well, so this information could be useful even if you don’t have migraine.)