By

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.

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

  1. Dana says:

    I am so sorry to hear that your daughter is dealing with NDPH, but glad that you have gotten a diagnosis and have a treatment plan to deal with it. You are doing so much for your daughter, you truly sound like a great mom. Hoping the headaches get better soon.

  2. Lisa Long says:

    Wow, I can absolutely relate to everything you’ve gone through with your daughter. My daughter’s continuous headache/migraine started when she was 16 and she’s now 18 and it hasn’t stopped yet, and recently the baseline headache has actually gotten worse. She has the continuous headache which is worse several times a week from 1-3 days, which they think is a migraine. The only good thing is that we did get her to a neurologist/headache specialist early on, unfortunately they still haven’t found anything that helps her headaches. Even with a good doctor, I think it’s still just a very long process of trying different things and finding what works. She’s worked her way through several different medications at this point, and stopped trying things for a while, until it got worse recently. Now she’s trying a different antidepressant to see if that helps (plus being in constant pain added to depression/anxiety symptoms as well – they obviously affect each other). She also did an inpatient pain rehab program last year, which helped with functioning – that might be something you should consider for your daughter if you haven’t already (we did Cleveland Clinic’s program, but there are others). That was not easy, but when they have gotten used to not functioning, sometimes that is what it takes to give them a kick in the pants to get going again.

    She was still able to graduate high school and go away to college, and just finished her first semester (she’s about 2 hours away) but it definitely was not easy for either of us. She made it through, and hopefully it will get easier as she keeps doing it, figuring out what works best, etc. We did make sure to meet with and register with the university’s disability services before she even started, and that was really helpful – she would not have made it through without that help and the accommodations. Unfortunately, it’s much like high school in that it’s really not designed for those with chronic illnesses, especially classes that are more-attendance based (such as a language class, which she is not going to do next semester).

    I do hope your daughter’s headaches start to get better – though I think as parents going through this, that is a lot to hope for – we know there’s not a magic pill, it’s a combination of things that they will always have to keep doing in order to function. But it is possible for her to do some of the things she wants, it may just take finding a different way to do it. If she does end up going to college, I’d be happy to share what we’ve learned!

    • Lisa, thanks for sharing your daughter’s experience. It sounds like it’s been difficult, but it’s reassuring to know that she’s found a way to function with the pain. I wish you both all the best in finding an effective treatment.

      Take care,
      Kerrie

    • Kate says:

      Hi Lisa,
      How is your daughter doing now?

      • Lisa says:

        Hi Kate, thanks for checking in, I know this article was awhile ago now! Unfortunately her health has continued to decline a lot. The headache hasn’t changed much but there’s been other worsening symptom such as joint pain and anxiety/depression which has gotten a lot worse. She’s 20 now and was able to attend college for about a year but has had to withdraw because of the worsening health issues. I think we may be on the right track with a diagnosis, I’ve talked to a number other parents of kids with chronic daily headaches for many years, as well as other symptoms and turned out to be Lyme disease. At some point they had gotten bitten and didn’t know and didn’t get it treated and it stays in your body to cause a lot of health issues. Her doctor did a basic Lyme test and her result was equivocal, meaning not positive or negative, leaning more about it, it was the worst test that measures enzymes and often gets a false negative. We were able to find a doctor who treats Lyme (normally integrative or functional medicine, this is actually an internist, I think it’s just doctors who have taken an interest in Lyme). She had her first appointment just a week and a half ago and he thinks just from her symptoms that’s what she has, but is getting the better testing done for that and other co-infections, so we should hopefully know for sure soon and she can start treatment. Though the doctor feels pretty sure, I still have a back up plan, she’s scheduled with a geneticist to check for something else. She also has a lot of symptoms of EDS, a genetic connecitve tissue disorder. I guess as she kept getting worse and nobody had any answers, we started pushing for what we thought was going on and had researched and talked to other people about. I like to share these things in case other people are stuck and not getting much help and need some ideas of what to look at.

  3. Kate says:

    Thanks so much to both of you who have commented. I’ve thought about the Cleveland Clinic – but we are on the west coast so something closer might be better. On the other hand, it probably doesn’t matter that much since no matter where it is it will require travel.

    Sometimes it seems like the treatment for headaches is so elusive – it’s almost medieval in the approach. We just seem to know so little about them.

  4. Dearne says:

    Hi There, I have been a Migraine Sufferer for 10 years now. I am 43 years old, so im in what they call the Peri Menopause Stage which my migraines have become worse due to Hormones. I have been on all those medications pretty much that you have mentioned. Due to awful side effects im now taking no medication. On this Blog I have gotten the best information and one of the Blogs was that a Migraine Specialist had put this lady on Vitamin B2 daily (morning) 400 milligrams. So I take 4 of the Natures Own Brand and also I take Natures Own Magnesium Chelate 500 milligrams by 3 tablets in the morning and 3 again before bed. Only take the Vitamin B2 by 4 in the morning. Oh My God, I have noticed a huge improvement with my daily headaches and migraines. When I get them now they are not near as debilitating. It is so worth a try, I thought what have I got to lose by giving some vitamins a go, and wow I am so surprised. I think it was about a month before I noticed a big difference. I googled a lot about B2 and it was very informative. Cant believe Doctors don’t mention this to migraine sufferers. Good Luck. I hope you get better, you are too young for this daily vail of pain. Cheers Dee

    • Dee, I’m so glad riboflavin has helped you. Headache specialists are starting to recommend it more frequently, but it’s just gaining a foothold as potential treatment. Your note reminded me that I bought some and have been meaning to try it. I just took my first dose and will post on it when I see if it’s helpful for me.

      Somewhat related, a friend started a prenatal vitamin and went from the verge of chronic migraine to not having one for months!

      Take care,
      Kerrie

  5. Lisa Long says:

    Kate: Most of the other kids at Cleveland Clinic’s program were from out of town, we lived an hour away, but honestly that wasn’t much easier. I tried to keep working at the same time, except for 2 days a week when parents came at 3 for support group time, then there’d be other things in the afternoons at times. But it was exhausting doing that. If you have FMLA that would cover the 3 weeks of time. Also healh insurance could cover some expenses if there’s no local program there (a family from Hawaii had hotel, meals, etc. covered for that reason). We had trouble getting our insurance to approve the program, at first it was denied. I appealed once and we were able to get approval. I’m happy to exchange contact info if you want to talk more about it.

    I’m going to leave you with a quote from my daughter about how she first felt about everything, after they had her get an MRI and that was okay. “Well, you don’t have a brain tumor, you need to go to school.”

  6. Mindy says:

    Your daughter is so blessed to have you! Having an parent advocate for your needs is SO important. And it’s great you’re so sensitive to her needs as well. Every migraineur needs someone who will just sit w/ them & just “be” when it’s too hard to do much else.

    Reading above about the clinic, I think there’s one in AZ (mayo maybe?) that might be closer for you.

    I wish you the best & hope for all of us that there is relief around the corner. Altho we may learn to live w/ this illness, we never give up hope!

  7. Sarah says:

    My daughter at 12 had daily headaches for over a year strait and we drove weakly to the pain clinic at Lucile Packard Children’s Hospital Stanford on Welch Rd. We did the B and Magnesium but they didn’t work. I refused the antidepressants. Anyway the Stanford doctors decided that my daughter’s headaches could be helped with biofeedback but that they were caused by stress caused by MOM. Stanford totally ignored my telling them that I had already tested for environmental factors during the summer by sending my daughter away for 3 weeks to girl scout camp (Camp Sherman) and grandma. My daughter still had headaches while she was away from home. So I took my daughter to Stanford weekly, ignored their guilt trips and kept on looking. A TMJ “expert” told us that my daughter had TMJ and that if I spent $4,000 on an appliance that this would cure her. Luckily my husband said “no”.
    My daughter’s headaches are now gone, no thanks to Stanford, and the cure was partly stopping eating chocolate and I think mostly Welchol, a bile acid sequester easier to take than Clorestramine which removes mold toxins from the body. Within a month of starting Welchol ( 1x-2x per day) my daughter’s headaches were gone.
    Apparently some people just can’t filter mold toxins out by themselves so they keep circulating. It didn’t help that my daughter was in a school classroom known for 10 years of a leaky roof and 2 water spills. Her headaches would get worse and she would get stomach aches and end up in the nurse’s office almost daily when the classroom door was closed and the heater was turned on. Stanford never talked to my daughter about diet triggering headaches past the initial intake interview. She was not told or encouraged to track the severity of her headaches or nausea.
    I don’t recommend Stanford. The psychiatrist there talked about stress and relaxation but they did not talk about taking control and finding your own triggers. My daughter was totally passive through all this and all the biological blame became psychological blame on Mom. As it turns out my daughter also has celiacs which 100 needle pricks didn’t figure out but a mostly Gluten Free diet had no effect on headaches maybe 100% would have helped. You need to get your kids involved in their own cure.
    I also have headaches. For 10+ years I was told by doctors that my nightsweats were pre-menopausal although how this could be coinciding with having and nursing babies they didn’t bother to explore. Fast forward I have Obstructed sleep apnea. If I stay totally off milk I can breath and have almost no headaches. I am also mostly gluten free. I am not sure if the gluten makes a difference but getting a cold will bring back all my headaches so I am focusing on breathing. I eat no cows milk nut sheep and goat are OK. I tried Welchol and it made my headaches temporarily worse as did Nystatin.
    Best of luck with your headaches. After all the big physical things are ruled out I would try a naturopath or a chiropractor who does muscle testing and try Welchol or another bile acid sequester. Again I don’t recommend Stanford.

    • Sarah, thanks for sharing your story. I’m so glad your daughter has found relief. Kate and her daughter found the pediatric clinic at Stanford to not be helpful in their case, but the headache clinic was. Part of it is the doctors you see and which service they’re part of. In any case, I’m really glad you and your daughter also have found relief.

      Take care,
      Kerrie

    • Bob says:

      Just an FYI: Gluten in weird in that there is no such thing as being “mostly gluten free.” It is either 100% gluten free or it is not effective according to doctors.

  8. Cassie says:

    I’ve been suffering from headaches/migranes for just about a year now. I started to notice something was up when i started getting headaches quite frequently and before all of this started, I would take 2 over the counter pain relives and they would normally go away…3 if it was bad. Soon, I started realizing that I was taking them, but nothing was happening. I didn’t go see a doctor until a few months in because I started to think that maybe they were in my head

  9. Amy Syverson says:

    Wow. I could have written every word of this article. You nailed the experience exactly. While I HATE that anyone has to suffer this way, can’t tell you how good it is to know someone else out there knows what it’s like.

  10. Kate says:

    Amy, thanks. I’m so sorry you have that understanding too. There is a FB group for the parents of kids like this. It’s called PEDIATRIC, TEEN & YOUNG ADULT MIGRAINE & HEADACHE DISORDERS PARENT SUPPORT. Please forgive the caps, I just copied and pasted it. I have found more help and information in that group than anywhere.

  11. Cindy says:

    I also truly appreciate this article. I too could have written an almost identical account. My daughter is turning 16 in two weeks and has had a chronic daily headache or NPDH since a mild concussion last February. Concussion symptoms resolved in a few months but the headache has remained constant. We have been through many of the same situations and medications as the mom above wrote about. Topamax brought her pain to a 2 for 3 months but then the doctor thought we should change meds to see if they could do better. Cutting back on the Topamax too quickly made her pain spike to a 6 where it has remained the last 8 weeks despite going back up to the full dose quickly. It seems to not work anymore. I would give anything to get her back to a 2. None of the abortives we have tried have worked either.We are starting Propranolol today and I am nervous of side effects or worsening pain. She is also scheduled for an IV infusion of Depacon in about a week. Fingers crossed but deep down I wonder if anything will work. She just started CBT therapy and acupuncture as well. We are talking to the school about getting a 504. I know the stress from school makes things worse. Thank you so much for sharing these posts. I will look up the support group on facebook.

  12. Lori McCoy says:

    Not sure how my name is going to display – I wrote this using a pseudonym at first to respect my daughter’s anonymity. Anyway, she tried Propranolol too. Unfortunately it caused her already low BP to plummet – but fortunately for her the antidote as eating salty foods like chips. 😉 We have subsequently learned that she also has POTS, which probably also was impacted by the Propranolol. So far CBT therapy is the one thing that has had any results, and I think because my daughter is so sick of being sick and tired of trying, she doesn’t put the work in to the CBT that is needed to get really great results. But it has helped some. Good luck and will see you on FB!

  13. Gina says:

    My husband has sent me this article about NDPH
    My daughter who is 15 years old has had this condition for almost 17 months
    We have tried 43 different medications , five neurologists , Botox ,MRIs ,acupressure ,acupuncture, and physical therapy .we have done it all
    Sadly her headaches range between a seven and an eight
    We live in Massachusetts and we have a fabulous doctor that specializes in NDPH
    Hebert Markley
    He has her keep a daily head ache chart to see if there is any change
    Since we have seen him in the last three months her headaches have gone down 11%
    At this point she is still between seven and eight
    I would love to get on Facebook and be in this group
    I as a parent find myself depressed at times because you can’t help

  14. Marlena says:

    Hello everyone. I have 17 year old daughter who has headache 9 out of 10 for 16 months.
    We live in Chicago and saw several different specialists and eventually got into Mayo clinic. Botax and PRC – pain rehab and several other medications didn’t help. Mayo referred to this pain as central sensitization and trained us to not talk about pain and pushed heavy routine of working out, sleeping routine, abdominal breathing, and biofeedback. They also said to keep it for 6 months. Well we did. It seems that some of other kids who attended this program are much better and some are still like us – no change. We are finalizing high end chiro treatment, did trigger point therapy, supplements and still nothing. The only relive is medial marijuana. She also has POTS. Her sister had similar offset of headaches and eventually was diagnosed with celiac and her headaches went away for good once she was on 110% gf diet. We have check her for celiac several times and it is not it.
    So I want to ask – if we are in care of neurologist should we see pain management doctor?
    Mayo is pushing Lyrica on us and I am really afraid of side affects – did anyone try it?
    I am considering using CrowdMed – site where you can post details and people try to diagnose you.
    I am also trying Dr. Kevin Smith in Huston who claims to resolve headaches and is willing to check our CT scans remotely and then tell us if we need to come – I think that is a great approach.
    Next I am thinking to review Nero Science center in Deerfield IL. They are the only ones that in IL that do Ketamine injections.
    I am not going to give up. There has to be a reason. I just joined FB group. If we all talk to each other I am sure we can help each other in the process.
    Also, Mayo doctors said that they think she will be better once she goes to college. I feel this is like asking me to believe in magic. I am shocked that she never had spinal tab done and nobody tried Topomax on her either.

Leave a Reply

Your email address will not be published. Required fields are marked *