New Daily Persistent Headache Support Group

Another post from Dr. Robbin's blog. I sure wish he'd give citations, but here it goes:

"Approximately 50% of patients have an identifiable trigger to NDPH"

>>stress, infection (particularly viral such as Epstein-Barr), exposure to certain toxins, head injury, cervical trauma (particularly in those who have thin necks with cervical hyper mobility)<<

"Several studies have evaluated long-term outcomes. One study revealed that, after two years with NDPH, about 25% of the patients were free of headache, and 66% had at least a 50% or greater reduction in headaches over time, while 15% remitted; median time to remission was 21 months. 8% had a cyclic form, with a relapsing-remitting pattern."

"We are beginning to identify the pathophysiology that leads to NDPH. Treatment of NDPH is scattershot and varied at present; further studies will undoubtedly lead to more effective therapies."

http://headachedrugs.com/column/new-daily-persistent- headache-continued/

I'm curious if the study that showed that after two years, 25% of NDPH patients were headache free--did that only include those who met the diagnosis criteria of NDPH in that they had the headache at least 6 months? Surprised with the 66% that had at least a 50% reduction in headaches...I assume they mean intensity as most of us have a headache (constant). I would have thought the median time to remissions would be lower, as that means a larger amount of folks than we've previously thought have a remission after two years. Excited if studies are being done about the triggers (pathophysiology) of NDPH, as that is what they need to find the cures. I say cures plural as I believe that not all of us have the same issue going on. Best wishes.

Thanks for posting that tortoisegirl. Is there any bibliographical information to site the studies? Just curious. I agree that there are probably multiple causes (triggers) and therefore multiple cures.

Sounds very interesting, my computer isn't behaving today so I wasn't able to look at the original blog (it locked up for some reason...who knows why). I am glad you mentioned some of the main points since I can't read it right now.

I am intrigued to know where these numbers came from since I haven't seen them before. I wonder if anyone has asked that in the comments (I assume it has comments since most blogs do).

Nope, no citations. I'll ask him about it and post back if I hear. No comments yet, but he doesn't get much of any...the requirement to register is probably a big reason why.

Yay I got a response that this is one of several planned posts that they were going to do on NDPH and put the references at the end, but these are the references from this one. All very recent articles in the "Headache" journal, but they require purchase/subscription for the full text. I'd purchase a subscription to this journal if it was cheaper ($244 a year). Even per article it appears to be $35 (and I had to register and then pretend to buy it by entering my billing address before seeing the price).

Rozen TD. New daily persistent headache: Clinical perspective. Headache. 2011; 51:641-649. (abstract: http://onlinelibrary.wiley.com/doi/10.1111/j.1526- 4610.2011.01871.x/abstract)

Evans RW. New daily persistent headache. Headache. 2012; 52;S1:40-44. (abstract: http://onlinelibrary.wiley.com/doi/10.1111/j.1526- 4610.2012.02135.x/abstract)

Wintrich S, Rothner D. New daily persistent headache – follow up and outcome in children and adolescents. Headache. 2012; 5023. (abstract: http://onlinelibrary.wiley.com/doi/10.1111/j.1526- 4610.2012.02135.x/abstract)

I also found another interesting abstract, "New Daily Persistent Headache: A Syndrome Not a Discrete Disorder", Goadsby, "Headache" Volume 51 Issue 4 April 2011, which sounds interesting:

http://onlinelibrary.wiley.com/doi/10.1111/j.1526- 4610.2011.01872.x/abstract

ohh! I would be very interested to see what Rozen says. He is my doctor. I have my second appointment with him later this month. If anyone can think of any good questions to ask, PLEASE!! I want to come in completely prepared. I was dealing with all of this fairly well in the early stages. I am only 8 months in and I feel so defeated. Any suggestions on things to ask about would be greatly appreciated! Thanksssss everyone

Well it kinda depends where you are in things. Are you on any meds/treatments right now? If so, was it something he gave you that first visit? I usually start with "what is your treatment plan for me?" In that I don't just mean what med/treatment are they going to try next, but a general overview. For example he may notice you have not tried two main classes of meds, X & Y alternative treatments, and there is a certain test he recommends getting done or another specialist to consult with.

A good neuro/doctor will have a multi dimensional approach to things...not just try one med, then another, then give up. lol I hear that too often. Hope you find some answers. I have heard some good things about him, the Doxycycline & Singulair protocol he discovered, etc. There is no quick cure or treatment for NDPH. Basically a lot of trial & error and patience. My questions will usually be about the treatment plan they present. Anything they brought up last time which I then researched and now have questions on, side effects of a treatment I'm on, etc.

Down the road when a doctor is running out of ideas and you have built a relationship is more the time to mention specific treatments, although if he doesn't mention it, I would ask what he thinks can be done to try to break the headache (or knock it down some). The beginning stage of the headache is the best time to be aggressiveness and try to break it. The more time passes, the tougher it gets. Hang in there! It gets better/easier. I'm surprised it was easier for you to deal with in the beginning. Do you mean more as you thought this would be a short term thing? Best wishes.