New Daily Persistent Headache

New Daily Persistent Headache

by Tammy L.
(Carthage, NC)

Mary Kay,

Is there anything out there that you have seen to be successful for helping to relieve the pain of New Daily Persistent Headache? Any research studies?

Our 14 year old son has had a constant moderate mostly severe headache everyday since contracting the H1N1 flu in Sept 2009. It is debilitating, he can not go to school and he basically has no life other than pain and cyclical abdominal pain, nausea and vomiting which has been associated with the headache. His headache is worse at night (2-5am) and he can not sleep.

He has been through almost every migraine prevention medicine, acupuncture, chiropractic, trigger point injections, botox, massage, relaxation therapy and three hospitalizations for DHE protocols. Nothing has given him any real relief. He has seen several pediatric headache specialists. At this point, while it would be nice to have total relief, we really would like to get to a point of having only mild to moderate pain even half the time. We are at our wits end and would appreciate any insights you might have.

Thanks for your time!

Tammy

Answer:

Hi Tammy,

So sorry to hear about your son. You are right, New Persistent Daily Headache (NPDH) can be one of the most difficult headaches to treat. I am hoping that post-viral meningimus has been ruled out as this may have migraine like symptoms. In kids, cyclic vomiting/abdominal pain may be part of the migraine syndrome but could also occur with NPDH.

I am sure by this point you have learned that about 40% of patients may respond to gabapentin combined with topamax. If your son has not been on this combination then it certainly is worth a try.

I will also assume he has had what is called The Raskin Protocol which is steroid infusions with DHE. We use this in our clinic but for severe cases I will order 1gm of steroid (which he can have if adult height and weight) x 3 days with DHE 1mg twice a day for the three days. I recently put a lady on this with dexamethasone 4 mg twice a day for one month and then a taper. Although she did not have NPDH, she did have migraine every day for 5 years. She too had failed at previous inpatient treatment. She is currently at 1-2 migraines per month that are manageable.

My point is that if your son is to adult height and weight, it might be time to get more aggressive with these headaches. He is at higher risk for depression because of the chronic pain. If depression is an issue, that too needs treatment as depression fuels headache and makes it worse.

You mentioned he was in the hospital, but was this at a headache center? If you have not been to Duke for treatment I would highly recommend this. Remember that headache specialty is a board certification now and it is worth while to make sure the doctors treating him are board certified in headache (no insult intended!).

One last option..and I will admit I have not tried this for NPDH because it is somewhat of a rare headache. Seroquel in low doses has been successful in our clinic in post traumatic headache syndrome when combined with topamax. I mention this, as low dose of seroquel hits the dopamine (pain) pathways in the brain and calms them. It also causes sedation so he may sleep. It will not have much effect on mood at low dose and I usually start at 1/2 tab of 25mg before bed, and work the dose up until the patient has less and less headaches.

Although you mentioned he has been on many preventatives, I hope some of them were combined and not just one at a time. Clearly he needs stratified therapy to get this under control.

Here is a list of headache specialists who are board certified here in the US.

For research protocols, try visiting www.clinicaltrials.gov for headache research.

Best of luck!
Mary Kay Betz MS RPA-C

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18 Months with NDPH

by Rick
(Boston, MA)

I am a 56 year old male, diagnosed with NDPH. I’ve been dealing with it for about 18 months. I’ve been to 3 neurologists, 2 ENTs, ophthalmologist, cardiologist, etc. . . I’ve had 5 MRI/MRA/MRVs, CT, spinal tap, sleep studies, sinus surgery and tried acupuncture. We've tried a dozen different medications including Topiramate, gabapentin and triptans among others - all with side effects that I could not tolerate and continue to work. I have never been a smoker.

The constant headache is always at least 2-3 on the 10 pain scale. 50% of the time it’s in the 4-5 range and infrequently as high as 6-7. The pain is centered in my head, often feels like it’s originating behind my left eye, but when especially bad it’s very difficult to tell origin. When I stand, from a lying down or sitting position, the headache gets much worse for 30 secs – 2 min, then settles back to the norm. I often feel like I’m going to pass out at those times. Lumbar puncture testing for low CFP came back "normal". I have constant noise in my head that doesn’t feel like it’s in my ears. It’s in the center of my head.

I have a history of migraines (2-4X per year for 30+ years) - always preceded by tunnel vision in both eyes. The daily headache is not the same pain as the migraine, but I now get a migraine more often (2-4X per month). I do not currently take any meds for the daily headache, and have found nothing that even touches the Migraine when it occurs.

Other than the headache, I don't have a lot of stress in my life. Any suggestions? Where can I turn that doesn't mean running through all the tests again? I'm getting desperate.

Rick

Answer:

Hi Rick,

Since you sound like you have had a complete workup I will assume the diagnosis is indeed NDPH or New Daily Persistent Headache. The only thing I don't see on the list is blood work. We routinely screen for anemia, thyroid disorders and Vitamin B12 and Vitamin D deficiency. I have had numerous patients whose migraines got better when B12 was corrected and daily headaches improved with Vitamin D supplementation.

If you have any history of anxiety and have a history of side effects to medications, I would recommend MTHFR gene mutation testing. A mutation here results in a defect in the ability to metabolize folic acid and results in increased anxiety. Folic acid ends up turning into seratonin and epinephrine in the brain which help with depression and anxiety. I have see other people improve in their ability to tolerate medications, once placed on supplementation. We give patients L-methyl-folate, not just plain folic acid.

If vitamin deficiency is not the issue, then the migraines should be addressed. Topiramate would be worth considering again if only to get the migraines under better control. NDPH may respond to this medication when combined with gabapentin, but it sounds like you did this already.

Unfortunately, there isn't too much out there that is new to treat this. Read the post above this one and ask your doctor about Seroquel.

If you have not seen a headache specialist, I would also recommend you consider this.

Good luck!
Mary Kay Betz MS RPA-C

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Does the scenerio above sound like you? If not, or if you think you need more information please read about different types of headaches to find out which type of headache you are experiencing.

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