Good article on NPDH

This is a pretty good article on New Persitent Daily Headache (NPDH). It describes my experience for about two years before it morphed into more classic migraine symptoms.

http://www.boston.com/dailydose/2012/06/21/when-headache-never-goes-away/fVy1pWGx1cJlSXhrgqFJNO/story.html

Dr. Todd Rozen, director of the Geisinger Headache Center in Wilkes-Barre, Pa., who has perhaps published the most research studies on NDPH -- and gets the most intractable cases -- said he believes most of the headaches are caused by one of two things: an immune system malfunction or a neck problem due to hyperflexibility. Certain immune chemicals including cytokines are known to trigger headaches, fatigue, and a general feeling of malaise, and sometimes the body has a hard time re-calibrating the immune system back to its normal resting state after it has been called into action because of an infection, bout of severe stress, or physical trauma such as surgery or a car accident.

For the past several years, he’s been treating NDPH patients for these two problems after evaluating their level of inflammatory chemicals in the spinal fluid and assessing the mobility in their neck. Some patients get treated with anti-viral drugs and antibiotics if they have elevations of a type of cytokine called tumor necrosis factor-alpha; others get physical therapy with a specialized technician or a nerve block treatment if they have chronic neck strain.

“Up until 4 years ago, I would say that I never got anyone better,” said Rozen. “Now I’m getting 50 percent improvement in most patients and have completely cured a few.”.

Thanks for the link! I have this condition and from what I know I have to agree. However, on the NDPH forum I'm on there have also been quite a few folks reporting they had Lyme and/or Lyme co-infections and responded to that treatment. I think I'm in that auto immune category as my cytokines were high and my doctors say my symptoms point in that direction.

I haven't actually tried anti viral meds, but I've done the Minocycline & Singulair combo and have tried Plaquenil, which some folks with conditions such as Lupus respond to. I've also gone the pt & massage & relaxation & psych therapy routes too. But, I think my neck symptoms are stemming from me tensing because of the headache.

I read the whole article and found in interesting Dr. Rozen's patients weren't responding to standard preventatives but Dr. Goadsby's were. I have read of quite a few folks online not having their neuro try them on a preventative long enough, but that isn't typical nor would I expect that from a top specialist, so there has got to be some difference in sample size or definition of responding to or something. Best wishes.

I'm still unclear as to the real difference between NDPH and migraines. I had daily headaches for about 2 years befor I started getting more classics migraine symptoms (one sided pain and noise sensitivity). Does one become the other? Is NDPH a form of migraine? It sounds from the article they are not sure.

I also got Lyme, but it happened after my headaches had started. In fact it was the pain specialist I was seeing who suggested Lyme as a possibility when I complained of the sudden and persistent joint pain I had developed. If she had not thought of that as a possibility, it likely would have taken a much longer time for me to get diagnosed and treated. So I guess I'm lucky. But maybe it just added to the existing inflation associated with migraine? Who knows? This is all so intermingled.

Anyway, I hope you find some luck. Maybe that doctor is on to something that will help.

NDPH is a type of Chronic Daily Headache. A lot of headache specialists actually still don't differentiate between NDPH and CDH, as its a relatively new diagnosis. Also since there isn't much difference in treatment, some don't see the point of the separate diagnosis. Personally I think they are very different conditions. Primarily as NDPH is much more treatment resistant. A significant percent of CDH cases are analgesic rebound as well.

The most typical case of NDPH is a sudden onset daily (often constant) headache in a patient without history of headaches, but it can also occur in someone with history of headache/migraine, or you could develop migraines after. They thought I had CDH + migraine for a few years, mostly as they ignored the sudden onset part and focused on the family history of migraine and that I had nausea & noise sensitivity.

Then I finally got to a doctor who knew of NDPH and it seemed so obvious. Lately I think I have developed some migraines on top of the NDPH. One of my triggers seems to be when my NDPH pain spikes. Thankfully they are infrequent and respond to Relpax, but I'm kinda stumped with them. But no, it is not typical for CDH or NDPH to become migraine, or even CDH or migraine to become NDPH. It can however be common to have migraines on top of NDPH or for the NDPH to have migrainous symptoms.

Thats pretty crazy you got Lyme on top of this. Did it respond to treatment and you now test negative? I do agree on the intermingled part...I think there is a big connection for a lot of folks with NPDH with auto immune. Similar to how many folks with migraine also have conditions such as fibro and IBS (I have both of those as well). My body seems to have had a few of these freak out episodes...first when I developed NDPH (it was during a sinus infection and after a bout of mono & strep throat), and more recently when I developed fibro, eczema, and intestinal bacterial overgrowth all around the same time (as well as had a recurrence of chondromalacia patella.

Diagnose wise NDPH is a sudden onset daily headache (often constant) which is bilateral, has gone on for at least 6 months, and doesn't meet other diagnosis criteria. Most folks with NDPH remember the exact day it started, often during a trauma, illness, etc. In contrast, CDH often develops as headaches/migraines become more frequent until they are daily. Migraines of course are most often one sided, often present with nausea and/or vomiting, and sensitivity to light and/or sound. Some get auras, pre & postdome, have triggers, etc. Most people would describe migraine pain as much more intense than NDPH or CDH pain, but it can vary.

To me, NDPH is almost worse than migraine as it doesn't relent. I also have wide variations in intensity which drive me nuts, as one moment I'm dealing with it fine and the next minute its out of control. It seems like I can never think straight. Folks with CDH are more likely to have triggers that can reduce the intensity and/or frequency of the pain. CDH is also more likely to respond to standard treatments than NDPH. However, much of what would be tried for these three conditions is the same. There are a few things more specific to NDPH though, such as a combo of Doxycycline and Singulair, which Dr. Rozen discovered. Hope you find some relief soon! Best wishes.

Great piece, I would try a nerve block in the neck. I had not seen that before.

thanks,

what a lot of good info and ideas that are being generated here. thanks so much. my head is spinning trying to process all and remember what my diagnosis has been over the years; intractable migraine with chronic daily headaches.

glad to get this info. today.

thanks again,


rose