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Your 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

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Migraine Expectations

Three days of a migraine unresponsive to medication last week and I was fed up.

The evening of the third day, I was worried that I’d broke something by eating some triple-chocolate brownies and the pain would never again relent. Melodramatic, maybe, but the fear of reverting to constant migraines again is omnipresent. Then I remembered that I started a new probiotic a couple hours before I ate the brownies. I skipped the probiotic the next morning and quickly shifted into migraine hangover.

You think I’d be used to days of migraine after so many years of chronic migraine, but the expectations I’ve developed over this year of feeling better have displaced those of so many previous years. It used to be that three days of an unrelenting migraine was just normal. I didn’t plan much because the default was being on the couch with a migraine. Now I’ve gotten used to being functional most days, to Amerge stopping many attacks in progress, to having the pain rarely above a 4. I really notice when I’m laid up for three days.

I’ve gone from assuming I will have a migraine all the time to assuming that I won’t have one and, even if I do, it will respond to medication and I’ll be able to manage it fairly well. The latter has finally become normal. And now I’m frustrated when life doesn’t meet the massively revamped expectations. How awesome is that?

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DAO and Diet: Does One Work Without the Other?

The short answer is maybe. The options in order of efficacy: 1. DAO and diet combined, 2. Diet alone, 3. DAO alone. There’s a very good chance the enzyme won’t be effective unless you also restrict your diet.

For me, diamine oxidase (DAO) has been very helpful only in conjunction with a low-histamine diet. From my experience trying to reintroduce foods, I am now positive that DAO alone would have done nothing for me. My dietician confirmed that. On our last call, she said “Even with DAO, you just can’t eat foods that are high in histamine. You just can’t.” Don’t panic, she was talking about me specifically, not everyone, and I’m an extreme case. (The link above will take you to a comprehensive Q & A on histamine intolerance and DAO. This one takes you to everything I’ve written about DAO.)

I’ve heard of a few people benefiting from DAO alone, but almost everyone who finds relief is also on a low-histamine diet. I know it’s a downer. Restricted diets can be a burden, especially at the beginning. It should tell you something that despite being frustrated and annoyed with my diet, I’m still sticking to it. Having times without migraine is just too precious and that only happens for me on the diet and taking DAO.

A few readers have told me DAO has been a magic bullet for them, but most who try it without diet modifications have no success or inconsistent results. Even with the diet and DAO, you may not get relief. If histamine isn’t a major trigger that sets migraine off in your body or gives you headaches, avoiding histamine or taking an enzyme that processes it won’t be of any use. Unfortunately, there’s no blood test or other quick, definitive way to figure out if this is the case for you.

I wish DAO were an easy answer and that the supplement could take the place of a restricted diet. Unfortunately, that’s just not the case for most people. And, unfortunately, it may not work at all for you — that’s just the nature of headache and migraine treatments.

Looking to buy DAO? You can get Histamine Block and Histame from Amazon. (I’m an Amazon affiliate, so I’ll get a small portion of the sales if you purchase through one of those links. I have no relationship, financial or otherwise, with any company that manufactures or sells DAO.)

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Giving Tuesday: Please Support the 36 Million Migraine Campaign

For Giving Tuesday, please consider donating to the 36 Million Migraine campaign — even $1 donations are extremely valuable. The campaign is to raise money for research, of course, but it’s also about showing lawmakers how many people are affected by migraine. The more people who donate, the more apparent it is that the allocation of research dollars impacts real people whose lives have been altered by migraine.

You can make your donation here. Donations can be designated in honor of a mentor or loved one. You can also donate using American Express reward points. And, if you work for a company that matches donations, you might be able to double your donation. All the details are available on the 36 Million Migraine donation page.

(By making a donation, you will be signed up for a weekly educational email from the American Headache Society. That was a bonus for me, but you can easily unsubscribe if you don’t want to receive it. They’ve never sent me requests for additional donations.)

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Your 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.