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NDPH Stories: Mom of a Teenager With New Daily Persistent Headache

What’s your story? Send an email with your name, age, headache disorder, and a little bit about yourself to kerrie [at] thedailyheadache [dot] com. I’ll follow up with some questions for you to answer.

A few weeks ago, you saw the story of Francesca, a 15-year-old who has new daily persistent headache. Kate, Francesca’s mom, shared her experience of parenting a teenager with NDPH.

What kinds of health care providers have been most helpful in
your daughter’s treatment?

Getting to this diagnosis was a long, difficult, and painful journey. Daughter kept complaining of headache after mono was supposedly over. Her doctor and several others could see no reason for a headache.

Started with pediatrician, then took her to ENT – discovered she had another sinus infection which was believed to be source of headache. Another round of antibiotics. Still complaining of headache. Back to ENT who put a camera up her nose, no sign of sinus infection.

Took her to a second pediatrician for second opinion as the headache was resulting in missing a lot of school. He performed an extensive battery of blood work, testing for everything including vitamin deficiencies. He called me and said, “there is no reason your daughter should not be in school, there is absolutely nothing wrong with her.” (He was wrong.)

Daughter started cutting school to stay home to sleep. When she was caught it was a real wake-up call for everyone. Her pediatrician said to take her to Stanford to see a pediatric neurologist. That was the first phase of getting to a real diagnosis. The neurologist immediately identified the headache as a chronic daily migraine, prescribed the COQ10, Maxalt and Topamax. We ended up changing docs after a few months as this one was very difficult to get an appointment with; Stanford had opened a new clinic in SF so transferred care to that site and saw a different Stanford neurologist for almost a year there. She took my daughter through the meds up through Propanolol and decided that my daughter would be better off at the adult headache clinic where, if accepted as a patient (she is a minor so it was up to the director) she would become eligible for more types of treatments. She had first appointment in July of this year – so far very happy with the clinic. On first visit there she was diagnosed with NDPH. It was bittersweet –having a name for this thing, but then learning more about it and slowly realizing how devastating it can be to a person’s life.

Do you have advice for anyone who is still searching for a doctor who knows about NDPH?

In our case, we did not know about NDPH until my daughter was diagnosed with it. If a headache is not going away, see a neurologist. Find a major medical clinic and go there. Major teaching hospitals are a good place to start. We are really fortunate to live near one of the finest medical centers in the world with a first rate clinic for headache and facial pain.

What other advice would you give someone with NDPH?
Don’t give up. Find a doctor that you trust. A doctor who also is a migraineur is a real plus.

Find a support group. You are often on your own in finding support. These seemed very elusive but I found a great group for parents on Facebook. It has been invaluable. It is a closed group, meaning you have to apply to be a member of the group. I cannot begin to tell you how alone I felt before finding that group, which has only been in the last six weeks. The collective knowledge in the group is amazing. There is also a group for teens and young adults. But even small children can have NDPH. As a parent it is critical that you find support and other parents to talk with. This is a huge, life-altering, debilitating illness. It is not a simple little headache.

What is the hardest part about your daughter having NDPH?

For the parent it is realizing that some of the dreams you have for your child may have to be adjusted. The route to college may not be the route you’d planned, you may have to look at alternate ways of just getting through high school. You have to be very flexible with your dreams, hopes and expectations.

It’s hard dealing with people who have no clue what it is and think that your kid is just pulling a fast one on you to get out of school. Let me tell you, it takes way more work to fake wellness than it does to fake illness.

School is stressful for both the child as patient as well as the parent. Even with a 504 plan, you really have to push and be your child’s advocate and sometimes it is exhausting. I know teachers have hard jobs but it is really discouraging when two out of six teachers show up for the 504 plan meeting at the beginning of the school year. It is especially frustrating to hear a teacher tell you that it is stressful for them to have your child in their class. Public schools are designed for healthy students. There is no mechanism in place to deal with a kid with a chronic illness.

It is hard to know how hard to push your kid. You have to communicate a lot to know when her physical limits are being reached. A lot of stuff doesn’t get done. Homework. Housework. A lot of stuff does get done: spending time together. Playing games together. When your kid is home by herself day after day, she is bound to get bored. She can’t sleep during the day due to the strict sleep regulations and is exhausted a lot, probably due to pain and depression. I’m a single mom working full time. But when I do get home, I have to try to push her to do some homework. She’s not always able to do it. Another side effect is an overall lack of organization, in part due to being overwhelmed by being so far behind, but I think the headache lends itself to that too. And if she’s had a true migraine, then she often gets a “migraine hangover.” Anyway, we play games together – there are a couple that we like to play on the iPad. One of our favorites is 7 Words. We don’t have traditional television, we stream everything. When she is feeling exceptionally crappy, I don’t limit the television. We have a couple of shows that we like to watch together, like “Big Bang Theory” and “Castle.” We do these things because she really isn’t up to doing other things like homework. It’s hard because I think others judge us, judge me for my parenting, and they are not in this situation. It’s really easy to say “If I were the one in that situation I would do X, Y, and Z.” But the reality is – we never truly know how we will react in any given situation until we are faced with it ourselves.

What else would you like to say about NDPH?

An UPside to NDPH is that I think it has brought my daughter me closer together.

Also, please stop asking me if my daughter’s headache has gone away. You will know if and when this happens. I will hire a skywriter and host the largest fireworks show known to mankind. It is not a series of multiple headaches, it is ONE LONG HEADACHE THAT NEVER ENDS.

Learning about other people’s treatment can help us figure out our own. Here’s what Francesca has tried and is currently doing.

Topamax, which was effective for about a year and got the headache down to a 2 or 3 on the pain scale. Then it stopped working. A sinus infection may have triggered the spike back up, it has been at a six or greater on the pain scale since February of this year. Verapamil, propanolol and microgestin (birth control) were all ineffective. Doxycycline was  ineffective and very poorly tolerated.

Also: tested for allergies, both for common things in the house and nature, and another for foods. Had several that were in the “might cause problems if around enough of it category” so we use special bedding to limit exposure to dust mites in pillows and mattress. Also on montelukast sodium (generic for Singulair) and loratadine (generic for Claritin) daily.

Recently started taking an anti-depressant at my request. While not exhibiting outward signs of depression, I think that it would stand to reason that someone experiencing pain at this level and also dealing with the social isolation caused by missed school would have to be somewhat depressed. Neurologist agreed, so prescribed escitaloprma oxalate (generic for Lexapro).

Ondasetron (generic for Zofran) for nausea brought on when NDPH spikes to migraine.

Botox – had her first round of injections in November, unknown if effective yet.

Acute meds: Originally was given 25 mg sumatriptan (generic for Imitrex); ineffective (we now know the dose was way too low, given at a pediatric dose for a person who at the time was already the size of an adult). Rizatriptan benzoate (generic for Maxalt) worked for about a year, then stopped working. Now taking sumatriptan at 100 mg and that is working to bring migraine down. NDPH remains. So pain goes from an 8 when spiking to migraine back down to a six.

Supplements: COQ10 and melatonin to aid sleep

Lifestyle:

  • Absolute regular sleep schedule, in bed by 10 pm up at 6 am 7 days a week
  • Sunglasses whenever outside
  • Carries earplugs to use when around loud noise such as on school bus
  • Sees therapist to work through issues about school/pain/teen life

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.

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NDPH Stories: Teenager With New Daily Persistent Headache

Sharing readers’ stories is something I did in the early days of The Daily Headache, but it fell aside when I got to sick to cope. After emailing with the mother of a teenager with new daily persistent headache (NDPH), I decided to revive this feature. To share your story, send an email with your name, age, headache disorder, and a little bit about yourself to kerrie [at] thedailyheadache [dot] com. I’ll follow up with some questions for you to answer.

Fifteen-year-old Francesca has had new daily persistent headache (NDPH) since she had Epstein-Barr mononucleosis in November 2012. She also has migraine. This is Francesca’s story. Soon, I’ll share what her mom, Kate, has to say about her daughter’s experience. [updated with link to Kate’s story]

What are your symptoms? How severe is the pain?

My headache pain can vary. For the last six months it has been a 6 out of 10 on the pain scale. Usually it’s on my temples and is more intense on my left side. Often it hurts in the back of my head near the base of my skull. I am sensitive to light, sound, and some sharp smells, they can increase the pain.

NDPH often comes on after an illness, accident or medical event. Did you have a precipitating event?

Before I had NDPH in my last year of junior high I got mono in the beginning of November. That lasted about two months or longer. After that I had multiple back-to-back sinus infections. I was still sick after that and I went to various doctors that kept giving the same answer that I was not sick. My mother then took me to a neurologist who diagnosed me with chronic daily headaches.

What is the hardest part about having NDPH?

The struggle doing daily activities that come natural to healthy people. Being sensitive to lights, sounds, and sometimes smells conflict with simple tasks. Sometimes when I stay at home with a migraine I can’t even leave the dark den because when I move in unfavorable ways the pain flares up. The days I do go to school it’s extremely hard to focus. During classes, I’ll try to listen but then zone out. When I snap back to reality I realize I missed some of the lecture and notes.

What do you wish everyone knew about NDPH?

Not everyone knows about it because informing lots people doesn’t really help anyone. Unless there is a person in their daily lives expressing the pain of NDPH, they cannot understand the struggles and stress that family members and the patient live with. Those who sympathize but do not witness the pain cannot truly comprehend.

What other advice would you give someone with NDPH?

The pain extremely sucks at the beginning and it will continue to suck for however long you will have it. You are probably confused or tired of the continuous pain and want it to go away fast. Gradually you’ll understand that getting healthy again is a slow process and you may suffer for a long time. Being a student who has NDPH it is quite hard because you have to go to school. Some teachers sympathize and give you the support and others can’t understand why you can’t just do the work because it is “only a headache.” They just don’t get it.

I’m not saying it’s not hard for an adult who has NDPH because they have to deal with the responsibilities of an adult and be functional and responsible.

But you can’t become a functional adult in society and be constantly tied down when you are still in your teens.

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.

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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 Reader’s Story: Living With New Daily Persistent Headache

Andy recently “celebrated” his third year anniversary of having a constant headache. He’s determined to keep it from defining who he is, which we all know is a constant struggle.

I woke up with a headache on January 22, 2005 and it’s been there ever since. I also determined through my own research that it is New Daily Persistent Headache — it has the symptoms of chronic daily headache without the traditional migraine elements.

Most days it’s pretty mild, allowing me to live my life fairly normally as long as I’m distracted by my job, family, baseball game, etc. But it never goes away. It’s always there, and it’s really devastating to think I’ll be spending the next 50 years of my life in pain. 50 years! See how terrible that sounds? I just came across this blog for the first time and it’s somewhat comforting to know there are other people out there who can relate to that. Depressing, yet comforting.

I sometimes wish I would have been in a car accident or suffered some specific traumatic experience so I could at least pinpoint an occurrence and say, “It’s awful, but these things happen.” In my case, all I did was wake up. It’s maddening, but I try not to let it define who I am.

Like others, I’ve spent the past several years seeing many specialists and trying dozens of medications — all to no avail. I’m currently taking an extended-release form of Tramadol (and Vicodin every few days) but aside from offering a few hours of slight relief, they just make me fatigued like most of the other meds I’ve tried.

We’re all in this together, which is why it’s so important to hear stories from many different people. If you’d like to share your story with readers and me, please e-mail me or leave a comment.

For more information, see the National Headache Foundation on new daily persistent headache and Her Life in a Nutshell, a blog about the disorder.

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.

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Ask the Expert About Headaches & Migraines: National Headache Awareness Week

A daily Q&A with headache experts is being posted each day of National Headache Awareness Week. Submitted by patients, questions cover the gamut of headache topics. Some so far: sinus headaches, sudden onset headaches, new daily persistent headache, headaches triggered by sun or sex, and burning and tingling in the back of the head.

Q&As from Monday, Tuesday and Wednesday are available as Word (doc) files. Many more questions are covered in past issues of NHF Head Lines, the organization’s newsletter. Read archives of readers’ mail and Ask the Pharmacist.

I’m often asked for recommendations of headache clinics or specialists, but only have experience with a few. The experts participating in this week’s Q&A are listed below with links to their clinics.