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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.

17 Responses to NDPH Stories: Teenager With New Daily Persistent Headache

  1. Dante says:

    Reading this makes me sad to know that there are people, especially teachers who fail to understand the disorder and what it means to live with it for the sufferer and her family. I can only hope that it gets better or at the very least, manageable for her!

  2. Amanda says:

    My daughter is in Grade 9 and this has been her new normal for the last two months and she has not been able to attend school. We are trying everything to help, but it’s not working. It is very frustrating.

  3. tortoisegirl says:

    Unfortunately I’ve heard this story too often. So much pain at such a young age. Kids & teens are quite resilient though. Additionally, from my readings, it appears that kids & teens have a higher chance of remission with NDPH than adults, whether spontaneous or as a result of treatments. There is a NDPH group on MDJunction, http://www.mdjunction.com/ndph. We’ve had quite a few folks there report that their child was able to become headache free or made significant improvement. Of course though its not an easy journey and what works for one person doesn’t for someone else. My headache also started when I was in school (2nd year of college) and after a string of illnesses (mono, strep, sinus infections). Its coming up on nine years soon for me, but its much easier to cope nowadays and I’ve made some improvements in the pain levels. Best wishes.

  4. Michelle says:

    I also started getting chronic daily migraines while I was in high school (I’m now 35), so I know exactly what Francesca’s going through. I especially sympathize with her sentiments that unless others are going through something similar, they have a hard time connecting. I have found this true for the last 20 year of my life. Francesca is very lucky to have such a caring mother by her side–just as I do.

    Best of luck to Francesca and her mother in finding relief.
    –Michelle

  5. Watson says:

    Hi, I’m 17 and I’ve had a constant headache since February 2015. Though I’ve never had mono I have always had sinus issues and a lot of the symptoms described here are symptoms I’m currently having, I have actually had to take this year off school in which I will be repeating because of it. How would one go about testing for NDPH?

    • Kate says:

      Watson: Sorry you are dealing with that. There is no test to rule in NDPH…it is a diagnosis of exclusion, so once a specialist evaluates you and can’t find anything else that fits (they often do some blood work, a ct scan or MRI, maybe a spinal tap), if you meet the criteria, you may be diagnosed with NDPH.

      I think the best thing to do is to find a neurologist who specializes in headaches, seeing headache patients all day every day, and whom you can click with and trust. They should see you every month or two and have new ideas to try each time. A good thing to try in the beginning is something to try to break the headache cycle; ideally this is IV meds in the hospital, but sometimes even oral steroids or antibiotics are helpful.

      You may find the NDPH forum at MD Junction helpful to chat with others like me who also have a constant headache (my username on their is tortoisegirl). Hang in there! Best wishes.

      http://www.mdjunction.com/ndph

  6. Barb Nowak says:

    my daughter now 15 yo started with a severe h\a following a flu like symptom this was 3 yrs ago pin point head ache to a date the pain is constant in the forhead does not move or ever go way. 2 sinus surgerys chronic sphenoid sinusitis. unsure if it is ndph or close.

  7. Dorothy says:

    I’ve had a constant headache since August 20th, 2017, and it hasn’t been easy. It does fluctuate, so it’s not always severe, which is nice, but it’s not easy getting doctors to understand that the headache is always there. I tell them it is always there, but they still always ask things like, “When you get them, how bad are they?” and “Are you still getting the headaches?” I didn’t have any illnesses before the headache. I woke up with it on the morning of the 20th, and it never went away. The only things I can remember are that I was trying to run around that time, I noticed the night before that my neck was a bit swollen, and I was having abdominal pain, and, consequentially, I had my gallbladder removed in October 2017. We thought that it was an arachnoid cyst in my brain, and I had brain surgery in October 2018 to fenestrate the cyst, and I thought the headache was gone, but a week later, it seemed to come back…maybe it never went away. On the 14th on January I saw my 2nd neurologist and he diagnosed me with NDPH and prescribed Topamax. So far I don’t feel any better. Has anybody had any luck with that?

  8. Kate says:

    Dorothy – I also have NDPH. Its tough to cope with. For some it goes away on its own or with treatment (more likely to happen in the first year or two, after then the chances may significantly decrease). For other like me (I’m 13 years in now), the headache becomes something to manage long term and find treatments to bring the pain down and improve quality of life, usually a combination of different types, not just 1 thing. Ideally you want to be seeing a neuro who actually specializes in (only sees) headache patients, and one who actually seems interested in helping you feel better.

    I didn’t personally have any success with Topamax, but from anecdotal evidence, it seems to be one of the meds most likely to help headache, including NDPH. However, there are some potential drawbacks. It is also known to be one of the more difficult meds to tolerate; as directed by your doctor (or even slower), increase the dose slowly and as little at a time as possible. Some folks report that drinking lots of water while tapering up can help with any potential side effects (which often improve with time). Also, it can take many months to properly trial – a couple months tapering up, then a few months at the therapeutic dose.

    Therefore you are not likely to see any potential results until after the dose gets increased from the initial dose to a therapeutic dose and some weeks or months have passed. If you end up getting intolerable side effects, keep in mind that if you have tapered up the dose at all, it needs to be tapered down, so contact your doctor and/or pharmacist about a taper down schedule (it can actually cause seizures if you don’t taper down even when not taken for epilepsy).

    In addition to daily medications (often called “preventative” in the headache world, although for NDPH the best outcome is to reduce the pain level), there are other options, such as trying something to break the headache cycle altogether (ideally IV meds, but commonly oral steroids or antibiotics), injections (Botox, nerve blocks, the new CGRP class), alternative therapies (acupuncture, physical therapy, massage, supplements), as needed treatments (such as meds like NSAIDs, muscle relaxers, and triptans), and lifestyle changes (sleep, diet, extra water, exercise).

    Often its takes a combination of all those types of things to make significant progress, as NDPH is notoriously stubborn to treatments. Unfortunately often doctors don’t want to do anything except prescribe 1 med and have us come back in 3 or 6 months. I recommend specifically asking about things, such as if you haven’t been tried on anything to break the headache cycle, or something to take if you get a severe pain spike and/or need to be more functional for an event.

  9. Dorothy says:

    Kate,
    Thank you for your response. I have been having a lot of side effects from the Topamax. 8, to be exact. I left a message for the medical assistant of my neurologist yesterday, but haven’t heard back. I don’t know if I’ll be getting off, yet. Some did get somewhat better when I drank more water, but not all of them did. I think the most annoying is the prickling on my face and hands. Plus I’m extremely tired and I can fall asleep almost instantly during the day, which is very inconvenient, I have an irregular heartbeat, strange sensations in my hands, which I can describe, if you need me to, confusion, not able to focus, and depression…though the depression has gotten better over the past couple of days. My headache also got worse since I started one the Topamax, which seems to defeat the purpose of taking the medicine. Now that I look over my list, only the depression and confusion got better. I think I’m focusing a little better, but not entirely.
    I’m hoping that mine will go away by August, but I know that there’s no guarantee. Thanks for your help.

  10. Mark says:

    Please look in MDJunction about the use of low dose naltrexone, and give it some serious thought!

  11. Mark says:

    Please be in touch with me regarding a very good treatment.
    Google sphenocath,

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