NDPH is not rare or weird, but it does require giving a detailed account of how the headache started. The diagnosis is not hard, but certain things should be considered.
NDPH is a continuous headache that starts all of a sudden, in a situation where one has not had a similar headache before. Often people can say exactly when it started: “I woke up with it on November 1st, 2009 and I have had a headache ever since.” About half the time it starts in the context of an infectious illness or a surgery, but often there is absolutely no clear precipitating factor. Much of the time, it resembles chronic migraine in its features, with days when there is light or sound sensitivity, nausea, throbbing, or pain on just one side of the head. It may also resemble a tension-type milder headache without any of those features.
The key to the diagnosis is how the headache started. Initially, the headache needs to be carefully investigated. There are many possible cause of a new onset headache. One must consider a variety of things, including Lyme disease, blood clots in the veins in the head, spinal fluid leaks or high spinal fluid pressure, unusual kinds of meningitis, and the medicines someone is taking, to name a few. But after the investigation is complete and the diagnosis is made, it is then time to stop endless investigation and treat. I say this because I have seen too many patients who are fixated on the why they have this headache, and never seriously gotten down to treatment.
NDPH is treated like the headache it resembles, generally chronic migraine or chronic tension-type headache. It is probably a little harder to treat than either of these, but most people can be helped. It could take any of the preventives that treat migraine or tension-type headache. Abortively, triptans or DHE may help. Sometimes we have to bring someone into the hospital for IV treatment to break the cycle.
I have seen many doctors and patients who think it is ok to use daily Excedrin, Tylenol, Fioricet, or other narcotics because they don’t have chronic migraine. It is not true, and if they fall into this trap the condition may just worsen over time.
Most of all, don’t give up hope. I believe most people with this condition can find a good to excellent treatment that leads to a vastly improved quality of life.
William B. Young, MD, FAHS, Professor of Neurology, Jefferson Headache Center, Thomas Jefferson University, Philadelphia, PA.