Gratitude

So it’s been just 1 year since I started this blog, posting regularly every 2 weeks. That was one of my intentions for 2018 and I am so glad I made it happen.  I have learned a lot more about headache management in the process.  I also learned that I do actually know a lot about it already.  Funny how that happens…..

My intentions for 2019 are to keep posting new content, maybe invite some guest writers to contribute. I also want to explore other avenues in the academic world and social media arena to get the word out to other pediatric providers about taking care of kids and teens with headache. To that end, I will have a poster at the National NAPNAP conference in March 2019 in New Orleans.  I have also started using Instagram (vkarianpnp), though I really do not know much about how to use it effectively. That will be another learning adventure. I am hoping my younger colleague will help me out : )

For this post, I thought I might present a list of a few of my favorite things, common occurrences that relate to taking care of kids with headaches. These examples are composites of several patients, not anyone specific.

Here they are, in no specific order:

  • A teen with new daily persistent headache (NDPH) for years comes in for a visit. This patient has attended school daily, engages in a headache-healthy lifestyle, physically and socially active. She is completely functional, working hard and just waiting for this headache to break. She has been working hard on self-care and turning on the relaxation response regularly. Today for the first time, she reports having 5-10 minutes of headache-free time several times/week. We have all waited a long time for this to happen, because it means the start of the end of her NDPH!
  • Tween migraineur who has struggled with an effective rescue plan comes in for a visit. They report that finally we have managed to develop a successful migraine rescue plan, which works consistently. We had gotten creative and it worked!
  • A college freshman comes in for her winter break visit. She had many fears about being away from home with migraines, despite my reassurance that she could handle it and would have more time for self-care. She reports to me: ‘You were right….college has been easier than high school. I didn’t believe you but now I know it’s true.” Score!
  • 15 year-old teen girl, with frequent migraine and difficulty managing a headache-healthy lifestyle, comes for a visit. She reports that her migraine headaches are occurring just once/week, instead of multiple times. What made the difference? “Well I finally figured out that lots of hydration actually works”, she says (after years of trying to get her to drink enough)!
  • Eighteen year-old male patient disabled by headache and mental health issues comes in for follow up. We have tried many medications, approaches such as partial programs, healthy lifestyle approaches. Headache is completely refractory; he is disabled and unable to function, not going to school. I have do not have much to offer, since the mental health issues are paramount, and he is unwilling to go inpatient for care. I ask why they have come in, when I feel I have nothing to offer. His mother responds “because you always listen, are willing to try anything, and you obviously care about us.”
  • Teenager with NDPH has tried everything under the sun without relief of symptoms. She undergoes a short duration lidocaine infusion and we speak on the phone 1 month later to check on the outcome. She reports no change in headache pain (I am disappointed). Then she reports that her mental fogginess is greatly decreased, she was able to get through her final exams without being totally wiped out, and has more endurance and energy. The first of many such reports from patients after lidocaine infusion and unexpected. There was no change in headache pain but other symptoms are better, which helps them function better. A small victory!
  • Another teenager with NDPH for 6 years and episodic migraine, who has had nothing but side effects from every medication ever tried, no positive effect with lidocaine infusion, and reluctant to try anything else comes for a visit. I propose trying occipital nerve and trigger point injections, because why not try a ‘Hail Mary’ pass at this point. We do it and when she comes back in 6 weeks, she reports the constant headache is no longer constant (still daily). And after 3-4 procedures, the chronic headache is pretty much gone until the effect of the injections starts to wear off. She still has migraine but had no ED visit for 9 months- a record. Who knew it would help?
  • Tween girl with chronic tension-type headaches comes for a regular follow up visit. She has considerable neck and shoulder tightness and at her last visit, I taught her the ‘Pinky ball’ exercises to self-massage and stretch. She was a reluctant participant at the time but her mother was interested. She reports today that her TTH are much less frequent now; she is using the pinky ball exercises every night before bed and thinks it has helped. Her mother nagged at her to do it at first but once she started to feel better, was doing it on her own. Tweens are such a tough audience!
  • Twelve year-old boy with chronic mixed-type headache, significant anxiety, ADHD and school avoidance, seen briefly when he stops by clinic during another visit. He had become very disabled, not going to school at all, and just spent 4 weeks in a pediatric pain rehabilitation program to get back in the game. His time in the PPRC was tough, changes were met with much resistance, and there were doubts whether he could maintain recovery when back in his home routine. He reports that he is back in school and going every day, saying he “would rather be in school than in the rehab program and does not want to come back”. The coordination between the PPRC and school resource personnel and the accommodations that were made allowed him to restart school in a positive way. He still had chronic headaches and anxiety but had learned how to manage and cope. Fingers crossed that it sticks!

Taking care of kids and teens with headache is a challenge. You often have to get creative to get improvement, looking at appropriate developmental approaches. You also have to understand that not everyone improves, due to many factors outside of your control.  The interplay between headache and mental health often slows progress. But sometimes improvement happens when we least expect it. That makes the work worthwhile.

Let me know if there are any topics you would like to see in the blog. Always open to suggestions.

Happy New Year!

School and the patient with headache

Over the past year, I have covered many issues and situations in the care of kids and teens with a variety of headache diagnoses.  What is the common denominator for all of them?  SCHOOL!  And your patient can find themselves either very supported or very challenged (or somewhere in between) in the school environment and by school personnel. You just don’t know how it is going to be for them.

Headaches of all kinds have an impact on school attendance and academic success. Unfortunately, headaches are an invisible diagnosis and the treatment of teens with headache vary for so many reasons. There are many preconceived notions out there about headache.

Kids with episodic headaches, either migraine or tension-type, need accommodations mainly around attendance, physical accommodations (lighting, noise, smells), and around getting assignments and exams completed. Typically they would have excused absences for days when they have a severe headache or migraine, as well as allowance for late arrivals or early dismissals.  They could get extra time to get their homework done, and the ability to make up tests if missed around the episode. There would also be the option of manipulating their environment, such as preferential seating, asking for a flickering light to be changes, and so on, depending on what triggers their severe headache or migraine.  All of these accommodations need to come without penalty.

Accommodations can be different and more difficult, for patients with constant headaches, such as new daily persistent headache, or post-concussion syndrome (headache and other symptoms), depending on the level of disability.  Kids might need to attend for a partial day, advancing as tolerated, to full days. They might need a quiet room to rest and recover as needed. They may need to be able to go to the school nurse or guidance office whenever they need to.  These accommodations apply to patients with episodic headache but more flexibility is needed for the patient with chronic/constant headache.

So who decides about the accommodations? Well, there is something called a Section 504 plan which allows for accommodations at school for patients with a disability, such as a medical condition (including headache, migraine, concussion). It requires a letter from a medical professional to support the needs.  It is not the same as an Individual Education Plan (IEP).

Here is the definition:  Section 504 is a part of the Rehabilitation Act of 1973 that prohibits discrimination based upon disability. Section 504 is an anti-discrimination, civil rights statute that requires the needs of students with disabilities to be met as adequately as the needs of the non-disabled are met. Section 504 states that: “No otherwise qualified individual with a disability in the United States, as defined in section 706(8) of this title, shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance…” [29 U.S.C. §794(a), 34 C.F.R. §104.4(a)].

In our clinic we often will provide a letter in support of 504 accommodations with the following language:

“Please allow Name to be tardy, be dismissed early and excuse any absences due to increased headache pain. If absences are occurring more frequently than usual, the school or the family should be in contact with our office.  If Name misses school, is dismissed or is tardy two or more school days per week, please notify our department. Should Name miss school due to increased headache pain or medical appointments, please allow him/her extra time to make up any missed assignments or examinations without being penalized. It is our expectation that Name attend school as much as possible, even partial day.”

We also have the families sign a Release of Information form, so that we can speak with the school personnel if needed.  This is important, as it conveys that our clinic, the family and the school are part of the same team, supporting the student.  I especially make sure I have the expectation for going to school daily as a part of the letter.  I explain that this is not a “get out of jail free” letter; we expect them in school daily unless they are physically unable. And we work with them to help them be able to attend regularly.

There may be other specific accommodations that can be added. This is important for teens with post-concussion syndrome who can be challenged cognitively, need frequent breaks, note takers/scribes, printed work, etc. I ask the student to think about their school day and identify any problem areas. Then we brainstorm about what can be done to make it bearable.  I think it is important for the teens to play an active role in their requests, as it shows that school and learning are a priority for them.

Of course there are limits to how much a school is willing to accommodate a student.  I emphasize strongly to my kids that in order to get what they need, they have to be good citizens at school. They have to make an effort to get to school every day, pass in work on time, show respect for the rules and regulations at school.

Limits are also determined by the specific school personnel; what are their current/past experiences with students with headache, what the message from administration is about attendance, and what the available resources are.  It can be interesting and surprising to hear from school personnel what their perceptions are of the student with headache.

There are many patients who are in supportive environments with adequate accommodations, and who thrive in school. This is the majority of my patients.  However, there are times when the school situation is less than ideal.  There are multiple factors for this, including the reactions of family, personnel, teachers and nurses, past history for all concerned, and inflexible school attendance rules.  It is always best to avoid confrontation, but not always possible.  Sometimes the situation becomes untenable and other avenues have to be taken. In difficult situations, I suggest having an education advocate, a person employed by the family to represent the student’s interests. When finances are an issue, someone connected with their local state representative’s office can be of help. It is always best for the student to have amicable relations with his/her school and that should be the focus.

What is the role of the PCP in all this? It is important to support the student and family and provide credence to their struggles. You can provide the letter recommending an evaluation for 504 accommodations, offer clarification for the diagnosis and treatment, and offer support to all concerned. You can set expectations around the medical diagnosis for the family and the school personnel. You can fill out whatever forms they request.  If needed, you can provide detailed information about the medical diagnosis and any specific accommodations you feel will benefit this patient. You could make a template with specific accommodations for headaches and customize it as needed.

However, I don’t feel that medical personnel need to get involved in conflicts between the family and the school, unless there is genuine discrimination and inequity in the situation.  You might want to check with the family to see if any other providers have supplied letters, to keep the message clear and free of conflicting information.  You want to be supportive but realistic regarding your role as facilitator.  It would be easy to get overly involved and detailed about what is needed. But that may not serve you as the medical professional, and could have a detrimental effect on your therapeutic relationship with the family.

School is a huge part of life for our patients with headaches. Managing the relationships between all concerned can be quite tricky.  Doing it successfully involves the ability to communicate and negotiate, along with providing the appropriate level of care and concern.

Concussion and the headache patient

In my last post I introduced the concept of concussion and the teenager with headaches. I would like to continue this topic by discussing what is helpful for these kids to help avoid disability and too much missed school.

The first step we recommend is for them to see their PCP or even the ED for a basic concussion exam. CT imaging can be useful with a history of more severe trauma, loss of consciousness or amnesia, or general concerns. The mild concussion diagnosis is then made and the usual recommendations of cognitive rest, physical rest, hydration and analgesia can be given.

For the teen with headaches, recent research using fMRI has shown that there is an element of neurogenic inflammation caused by head trauma. Often when the patients call us after concussion has occurred, we have them use a Medrol dose pack (dexamethasone taper), as way to reduce this inflammation. It can be quite helpful, though we really should try to do some research to quantify the results.   It is something to consider for those patients with baseline headache disorders who are very symptomatic.

So time goes by, the usual concussion recovery measures are done, and usually the teens will be feeling much better within 2 weeks. But for my patients with baseline headache disorders, that is not usually how it goes. So often, when one of my patients has a significant (or even not very significant) head bump, the families can go into panic mode. This is because the teen will often have more and prolonged symptoms than would be expected.

The initial symptoms will subside over time, leaving constant headache, and a variety of other complaints consistent with post-concussion syndrome. Besides headache, these symptoms include sleep disruption, moodiness, vision changes, hearing changes, persistent nausea, dizziness, vertigo, and cognitive difficulties, including inability to attend school and learn.  Since every teen and their responses are different, you need to address the issues at hand.  The symptoms that tend to become prolonged are those related to school functioning- trouble with reading, concentration and focus, and trouble related to the school environment –lights, noise, general overstimulation.

The first thing to address is the headache, and to make sure that they are not overusing analgesia. It is OK to use NSAIDS or Tylenol daily for up to 1 week, but much longer than that puts them at risk for developing medication overuse headaches.  So figuring out what they can do to feel better pain-wise is important.  We often talk about strategic use of medications, such as using naproxen during finals or before standardized testing is a smart way to medicate. They need to ensure excellent hydration and could try a little caffeine to help the pain.

For kids with sleep troubles and/or persistent nausea, I have found that a small dose of hydroxyzine (10-25mg) at bedtime can make a big improvement. Melatonin can be helpful for sleep (no more than 5mg), as well as the usual sleep hygiene recommendations (see an earlier post about lifestyle, All about the migraine part 2-3).

School!

There are many challenges for patients with post-concussion syndrome in returning to school. The school environment, with bright fluorescent lights, loud noise, and general commotion and overstimulation (think auditorium assemblies and basketball games in the gym), make school difficult to tolerate. This is true for teens with baseline headache disorders but worse after concussion.

Then there is the challenge of trying to think, focus and learn, especially frustrating for our teens who are natural ‘strivers’; those teens who are place high demands on their achievement. And it is very hard for these students to accept that they need accommodations and that they need to lower the bar of expectations for themselves, at least during recovery. Parents can also have difficulty with this, but they tend to have the maturity to understand what is needed, and can see the big picture. These kids worry me, as they are the ones at risk for becoming disabled, losing hope of ever feeling better, concerned about what the impact of the concussion will have on their future.  They can be unable to come to terms with the need for accommodations and slowing down, start to give up, and begin the slow decline towards disability.

So how can you help?

  • Support and frequent check-ins with the family can be very helpful to keeping them on track.
  • Work with the school on an appropriate re-entry plan, starting with partial days and frequent breaks during the day for cognitive rest. Some schools have special programs to help facilitate this, and can be really helpful. Asking for flexibility with the plan can make it more successful.
  • Enlist your patient to identify the problem areas of his/her day. Is it lunch in the loud cafeteria? Bright lights in English class, flickering lights in the science lab? Loud and hot environment in the gym/PE?   And after identifying the problems spots, work with the student to advocate for what can help them, such as preferential seating, excused from PE class, shutting off the lights, replacing a flickering light bulb, etc. Being able to make these changes can be very empowering and help them stay functional.
  • Cognitive rest is important and there needs to be emphasis on a gradual return to cognitive functioning and demands. They need reinforcement that overtaxing their brain will not help but only hurt them. There are specific accommodations that are helpful and I will attach a link here. Concussion Accommodations
  • For some teens, concentration and focus can be helped by a small dose of stimulant (methylphenidate or amphetamine), being mindful of other issues such as appetite and sleep.
  • Referral to Physical therapy for head and neck stretching. Referral for cognitive rehabilitative therapy (found with occupational or speech language therapy) can help with organization and functional skills post-concussion.  If you have a dedicated concussion center in your area, they will have these resources.
  • Return to physical activity is a slow process and using activity pacing is very useful. It is a difficult subject to explain but there is a series of You Tube videos done by a teenager with chronic pain that helps teens to figure out the concept. She discusses how to assess what is their current activity tolerance, how to set goals and reach them in a sensible measured way.  I put a link to these videos in the resources. YouTube videos on activity pacing
  • Finally, mood issues, irritability, anxiety and depression are a part of post-concussion syndrome. As the headache improves, this can improve also.  But as the duration of the symptoms continues, it is not uncommon for these kids to really get down and feel hopeless, or get very anxious about ever catching up in school and life. The most important thing is to be vigilant and refer to appropriate psychological clinicians as soon as you notice that the teen is having a difficult time. Explaining that feeling down and anxious can be a part of the post-concussion recovery and getting help them keep on the recovery track.

Awareness about the consequences of concussion is becoming much more mainstream. Less familiar is the effect of concussion is for those kids who already have baseline headache disorders. We owe it to our patients to be aware of the impact and support our families through this tough situation.

The challenge of taking care of patients with NDPH

I have recently reviewed the basics of New Daily Persistent Headache (NDPH) so providers in the community can have a better understanding of this primary headache.  It is often misdiagnosed, mainly due to unfamiliarity.  And now that you have a better understanding, you will be able to recognize it more readily.  One of the most frustrating things for the families is the lack of a firm diagnosis.  Many medications are tried and failed, some appropriate and some inappropriate.  They often express relief after a headache program evaluation, when the providers can explain what is really going on with their child.  The diagnosis is not good news, but uncertainty is often worse.

So what exactly can you do to help a patient with NDPH? Since I know that few medications are useful, I do not routinely recommend one.  I take my cues from the parents and patient, and sometimes they have different opinions.  Oftentimes, the parents are eager to try another med, anything to get this better.  But the teens I deal with really are not interested in doing another medication that ‘will not help me and just make me feel bad’. I generally agree with them.  They are usually interested in participating in research, anything to better understand the NDPH.

In the past 1-2 years, I have been recommending that they try the short-duration lidocaine infusion. The way I look at it, it’s a short intervention that is either going to help or not. But it will not make them worse, which makes it a big plus. And if it is helpful in reducing their symptoms other than headache, that has the potential for improving function and avoiding disability.

Apart from these kinds of initiatives, I just focus on the basics.  That means healthy headache hygiene, which includes adequate hydration, good anti-inflammatory diet, moderate but frequent exercise, and a good night’s sleep.  I reviewed these areas in previous posts (All about the migraine parts 2 & 3). This is even more important for the NDPH patient and most of them are challenged in one or more areas.  They are frequently my patients who don’t drink enough, eat a beige diet, and are persistently nauseous, don’t exercise at all, and have a hard time with sleep. It can be overwhelming to have to tackle many lifestyle issues, so we focus on one at a time, baby steps to improvement.

I like to see them in follow up every 3-4 months to keep them on track. Frequent reminders about any positive progress are also helpful.  When they are discouraged, I refer back to my notes from previous visits, citing an improvement in pain scores or general functioning that I documented 1 year before.  When you are in the weeds with this kind of chronic pain problem, you tend to not notice when things get better incrementally. It can give them encouragement to continue on the path to wellness.

A huge aspect of dealing with teens with NDPH is learning how to cope and manage their chronic pain and stress. I start with recommending counseling with CBT to help them learn pain coping skills. They can be resistant but I can be persistent.   (See previous post: stress and migraine).  There is usually an anxiety overlay in these patients- whether it was there before the headache or developed as a result of having chronic headache.  We can consider starting an SSRI as a way to manage anxiety and also to help with the headache.  I will explain the nervous system pathways for pain and anxiety are right next to each other, and that treating anxiety could very well help the headache.  This is almost always a helpful approach.  It doesn’t ‘cure’ the headache, but promote better coping ability which leads to better functioning, which can lead to NDPH improvement.

I have also tried occipital nerve and trigger point injections in those patients whose headache seems more focal or located in the occipital area. This has the possibility of improving the headache.  I ask that they come for 2 procedures before deciding it does not help. I would say it helps reduce the pain level in about 50% of my patients with NDPH (my guestimate). This is another intervention that could help, and generally does not make the headache worse in the long run.

Understanding and treating NDPH is a work in progress. Redirecting from ineffective and often invasive measures, following patients closely with an open mind and constant support, and emphasizing non-pharmacologic approaches  remain the standard of care until, hopefully, new research brings new insight.

What’s new with NDPH?

I have spent a little time introducing and reviewing New Daily Persistent Headache (NDPH), and what a miserable headache it is. We know that traditional headache medications and treatments are not particularly useful in alleviating NDPH.  But there are some new initiatives available, some research initiatives and novel approaches to NDPH treatment which may bring some positive answers. I happen to be involved in a research project funded by the Migraine Research Foundation and also in a novel treatment approach to treating NDPH at our tertiary pediatric headache clinic.  So while it can be disheartening to care for kids with this diagnosis, it can also be hopeful, if you can identify something that might just help.

Because NDPH often appears after a viral illness, some researchers have posited that the headache is part of a post-inflammatory or autoimmune response. It is also a chronic pain entity, so treatments used for chronic pain might be useful (chronic regional pain syndrome (CRPS) or fibromyalgia). Treatment options now being considered are those that reduce inflammation in the body, such as low-dose naltrexone, anti-inflammatory diets, and short duration lidocaine infusion.

Here are some of the ideas that are being researched concerning NDPH:

Research initiative: Endogenous Modulation and Central Sensitization in New Daily Persistent Headache (NDPH) in Children, Boston Children’s Hospital, Pediatric Headache Program.  This project has started and recruitment is ongoing.  The aims of this research are:

  • Psychophysical Characterization of NDPH: To define differences in altered modulatory systems using offset analgesia in well characterized NDPH pediatric patients in the symptomatic and recovered state.
  • Treatment Effects in NDPH: To define the effects of low-dose naltrexone on offset analgesia.
  • Genetic Markers of Disease Persistence: To define the potential of chronic pain-related gene markers in predicting disease persistence.
  • Brain Markers of Disease Resilience: To evaluate genetic and brain markers of disease state.

The proposed work would be the first comprehensive, study of pediatric NDPH. If successful it will provide insights into altered modulatory systems in the disease and define for the first time potential insights into mechanisms underlying chronicity vs. response.

Research initiative: Analysis of Headache Chronification with Imaging, Deep Phenotyping, and Proteomics, Stanford University School of Medicine

The purpose of this study is to better understand disease processes and risk factors involved in onset of chronic daily headaches/Chronic Migraines. They hope to learn more about the basic pathophysiology and neuromodulation of NDPH to determine effective treatment strategies and prophylactic measures.

Participation in this research study includes online questionnaires, a blood sample, a lumbar puncture, and a magnetic resonance imaging (MRI) scan without contrast to measure brain activity. This study was started in 2014, will continue until 2020, for patients over the age of 18 years.

Research initiative: Plasma Calcitonin Gene-Related Peptide and Nerve Growth Factor levels in New Daily Persistent Headache and Chronic Migraine to identify potential biomarkers and therapeutics targets, Montefiore Headache Center, NYC.

This research is studying whether CGRP or NGF levels are elevated in the plasma of New Daily Persistent Headache patients compared to those with chronic migraine and normal controls. This study is ongoing, for patients over age 18 years.

Treatment: Botox for NDPH: Recent reports from the Cleveland Clinic and Case Western Reserve describe patients with new daily persistent headaches (NDPH) who were treated with Botox injections (standard Botox for chronic migraine protocol). The improvement was modest (30%), with some reduction in headache pain, headache-free days not previously experienced, and positive effects lasting for 8 weeks. Available for patients over 18 years, and pending insurance approval (not FDA approved for this indication).

Treatment: Low dose naltrexone: Naltrexone is an anti-inflammatory agent, similar to the opioid antagonist naloxone, and an effective treatment for opioid addiction. It was recently discovered that when taken in low doses (1/10 of the typical dose), it may reduce the severity of chronic pain symptoms, by acting on the glial cells and other receptors in the nervous system. Because of its analgesic property, low-dose naltrexone may be an effective treatment for the management of several chronic pain conditions, including fibromyalgia and chronic headache. More research needs to be done to evaluate long-term effects of using low-dose naltrexone, and to assess the efficacy and safety of this medication in the treatment of patients with NDPH. If prescribed, this medication has to be prepared at a compounding pharmacy; retail pharmacies carry the standard 50mg tabs, and low-dose naltrexone is dosed at 4.5mg, which requires compounding, usually not covered by insurance.

Treatment: Short-duration lidocaine infusion: Lidocaine has been used as anesthesia and analgesia for more than 50 years, and is very effective at relieving nerve pain, chronic pain syndromes, and pain after surgery.  Lidocaine is an amide local anesthetic agent, which blocks fast voltage-gated sodium channels in the cell membrane of postsynaptic neurons, preventing depolarization and inhibiting the generation and propagation of nerve impulses.  Basically, lidocaine stops pain impulses from going to and from the brain, so pain is blocked.

In my pediatric headache program, we now offer short duration lidocaine infusions to our patients with New Daily Persistent Headache, the first program doing this with pediatric patients. It has been used in adult pain programs for chronic pain for many years. We hoped it would be effective for teens with NDPH, also a chronic pain condition, providing a decrease in pain level and/or reduction in the associated symptoms for these patients.

The protocol for short duration lidocaine infusion for patients over 50kg is 200mg of lidocaine IV over 2 hours , with appropriate monitoring for alterations in cardiac status and signs of lidocaine toxicity. For patients less than 50kg, 4mg/kg is given. At first, we did a bolus dose of 100mg over 30 minutes, followed by an infusion of the remaining 100mg over 1 hour.  Unfortunately, in the 1st 3 months, almost all of the kids had side effects during the bolus.  So we changed to a 2 hour infusion which has been much better tolerated, many fewer reactions.

So what are the results? Well at first we were disappointed because there was really minimal reduction in headache pain. Then, it became clear that the benefits were more significant in reducing the other symptoms. In particular, patients were achieving improvement in their persistent nausea, dizziness, difficulty with concentration, difficulty with physical activity, mental clouding, fatigue and overall functioning. And for the majority of patients who responded positively, they did not return all the way to baseline after several months, with sustained improvement.  We have a number of patients who come in every 3 months and repeat the infusion because it has benefitted them so much.  What the kids tell me is that they can actually tolerate the headache pain, when the other symptoms are reduced, but have a great deal of trouble functioning with both headache and the rest of their symptoms. I think the kids who have many associated symptoms seem to get the most benefit and improvement.  I will put a copy of the poster abstract we did about this- preliminary results over the first year- in resources.

This is an initiative I am quite involved with, screening, monitoring during infusion and follow up with data collection. It is exciting to find something that is showing benefit to my kids with NDPH. Granted, we only have about 60% positive response rate, but for those 60%, it is wonderful.

We will be continuing this initiative and collecting data and at some point be putting together an academic paper to share. I am also hopeful that some of the research work will also yield positive results. At the very least a better understanding of the pathophysiology of NDPH would help guide future therapies.

I will discuss more about NDPH trajectory for resolution and other matters in the next post.

More about NDPH

Let’s talk today about the story of NDPH, a primary headache not well understood or recognized, a zebra among headaches. The more we know about it, the more it is recognized.  But that does not make it any easier to deal with as a provider or a patient.

The first documented description of NDPH was in 1986, by Dr. Walter Vanast, a neurologist in Canada. He described it as a benign syndrome that resolved regardless of treatment in 73-86% in 3-24 months. In a recent interview with Dr. Vanast in Headache journal, he describes his interest and search for the cause of this headache. He thought it was an auto‐immune disorder with a persistent viral trigger, such as EBV. And this description is still in use today, though in my opinion ‘benign’ is not the word I would use.

About half of patients with NDPH have had a febrile viral illness near the onset. Others develop it after a minor head injury, or pseudotumor or idiopathic intracranial hypertension (IIH). Others seem to have no known reason for this headache to develop. There continues to be very little known about the pathophysiology of NDPH.  A recent paper stated that it might be related to persistent central nervous system inflammation or related to cervical hypermobility. We really don’t know.

The incidence in adult of chronic daily headache is 4%; the incidence of these adult patients having NDPH is between 1-10%, so not that many. But in children and teens, the incidence is much higher: 20-40% of pediatric chronic daily headache patients. Way more kids and teens than adults have NDPH. And it is probably underreported and under recognized.

There are several different patterns of headache associated with NDPH.

  • The first type is mild and self-limiting, resolving without therapy.
  • The second type is moderate, with a constant headache that waxes and wanes over time. Good days are more like tension-type headaches and bad days are more like migraine.
  • The third type is a continuous severe headache, with disabling high-level pain all day every day.

We don’t see many patients with the first type, with lower level headaches that just end up going away. Most commonly we see the second type, kids with constant all day every day headache, pain rated 5-6/10NRS on average with a range of 3-9/10NRS. On lower pain days, they might have mild nausea, mild dizziness, mild mental fogginess and light sensitivity along with headache. On higher pain days, all of their symptoms are severe and migrainous; pain is 8-9/10NRS, and they are non-functional. Their pain and symptoms are disabling; change in pain level is influenced by activity, weather patterns, stress and cognitive effort.  Fortunately, while we do see the completely refractory third type, they are not as common– but so difficult.

So it is hard enough to have a constant headache, no headache-free time. But add to that is the realization that most common treatments and even the most aggressive treatments are ineffective against this headache. Current daily medications do not alleviate their pain and the patients just experience all the side effects.

Usually by the time the patient arrives at our specialty headache program, they have already tried at least 1 or more daily medications without success. The families might like to try more medication, so we would pick another of the common ones. The choice is often based on what other symptoms are most bothersome.

  • Unable to sleep? Choose amitriptyline or gabapentin.
  • Worried about weight gain? Choose topiramate.
  • Don’t want any mental clouding? Try propranolol.
  • Super dizzy? Try verapamil.
  • Persistent nausea? Add hydroxyzine at bedtime.
  • Very tight neck and upper back muscle? Choose tizanidine.
  • Don’t want medications? Try a supplement- magnesium or riboflavin.
  • All else fails? Try occipital nerve and trigger point injections.

You might find that something helps other symptoms, even when it does nothing to the headache. I have had great results with using hydroxyzine at bedtime for patients with persistent nausea. Having less nausea may make the difference between going to school or staying home…. again.

It is just a matter of time before the families (really the patients) decide that they do not want to try any further medication, at least daily medication. Most tell me that they feel better off the meds.

Things you might try for a migraineur in status migrainosis such as going to the ED or being admitted for DHE are not usually helpful. Often the patients end up more frustrated, faced with another ineffective intervention.

As far as rescue medications, again you try the basics- NSAIDS, antiemetics, caffeine. Most important is to stress that analgesia should only be used for severe headache and no more than 3 days/week to avoid overuse headache. As you can imagine, overuse is tempting, kids just want to feel better.  But I stress that too much analgesia will just make them feel worse, and in the end, the medications will stop working. I encourage being strategic with analgesia. Save it for when you might really need it, such as before SAT exams or before a big sports game or concert.  This is generally effective in preventing overuse.

What is really important is for the families and patients to know that you are all in this together. Accepting where they are and working with them. Offering hope but being realistic.

I will have more to say about some research initiatives and novel approaches to NDPH in the next post.

Tension-type headache strategies

I have reviewed factors contributing to tension-type headaches, as well as some preventive strategies.  In this post I will cover appropriate rescue medications, and talk about treatment for underlying anxiety, which often needs to be addressed for kids with tension-type headaches.

Analgesia is a key part of a rescue strategy for TTH. Non-steroidal anti-inflammatory drugs (NSAIDS) are the mainstay of headache analgesia. The side effects are GI, such as gastric distress, nausea, ulcer, hematologic, such as bleeding disorder or platelet dysfunction, or related to allergic reaction.  Any of the NSAIDS can be effective in treating a tension-type headache.  Treating a TTH  as soon as possible is the key to success.  I talked about this class of medications more in depth in the blog post “migraine medications to the rescue…analgesia”.  Ibuprofen and naproxen are the most commonly used NSAIDS and are effective for those who can take them.  Some people will also use diclofenac, sulindac and even ketorolac.

For patients who cannot take NSAIDS, acetaminophen (Tylenol) is useful and usually well tolerated, with adult dosing for teens of 650-1000mg q4-6h, weight- appropriate dosing for younger kids. There are many formulations- suspension, chewable tabs, dissolve tabs, regular tablets and extra strength tablets.

Aspirin can also be used, but should be used in a limited fashion due to the risk of Reye’s syndrome.  Another Excedrin product, Excedrin Tension Headache, similar to Excedrin migraine, but does not contain aspirin can be used as well.  Each coated tablet contains 500 mg of acetaminophen and 65mg of caffeine. Of course you wouldn’t want to use this in the evening.

For all analgesia, patients should not take them for more than 2-3 days/week to avoid medication overuse headaches.

Other medications: there are a few other medications that can be used for treating other symptoms associated with tension-type headaches. These would include anti-emetics like ondansetron for nausea or an antihistamine, like Benadryl or hydroxyzine, for dizziness. A muscle relaxant could also be a rescue medication, such as tizanidine, but quite apt to make them sleepy.

Complementary rescue strategies:  In addition to the medications we have talked about, there are a number of complementary interventions that can really help resolve a tension-type headache.  In addition, reiki, acupuncture and other complementary therapies can certainly play a role in reducing stress and anxiety, which often trigger tension-type headaches. For some patients, doing these strategies can treat a TTH, and they do not need to take any medication.

  • Aromatherapy: using an essential oil, such as peppermint, lavender, or ginger used topically, gently massaged on the temples or behind the ears
  • Ice/cold (or heat) applied to the forehead or the neck
  • Gentle massage to the neck and occiput or frontal/temples
  • Anything that activates the relaxation response, such as a CBT or biofeedback exercise, or breathing technique, using a relaxation/meditation app, soothing music. My favorite is the Insight Timer app, so many options and free.

Stress and anxiety are frequent triggers of tension-type or stress headaches. Many of us carry our cares and worries in our neck and shoulders. During stressful times, the trapezius and paracervical muscles (which encompass our head) tense up around our heads, squeezing the occipital nerve in particular bilaterally, and triggering headache.  Relieving the pain involves getting these muscles to relax. I refer you to my blog post “stress and migraines” for more information about this and appropriate strategies.

When I have a patient who demonstrates or reports having significant anxiety, I know that this needs to be addressed in order for the teen to start having less frequent TTH. This is not always a welcome message, especially when I encourage them to get some professional help. It is not always easy to bring up, but so necessary.  There are many ways to intervene, including medications, but having a good counselor to talk to and learn CBT skills from is the best intervention, from my point of view. Kids and teens actually do very well with CBT (Cognitive behavioral therapy), especially if they do their ‘homework’ and if there is buy-in and support from the family.

Unfortunately, there can be significant barriers to getting into counseling, including lack of local providers, insurance barriers, time constraints and general lack of commitment to the process.  I think finding an appropriate therapist (psychologist, LICSW) is the biggest hurdle.  The PCP can help by knowing the network of child psychology providers in the area. The website, www.psychologytoday.com, has a search feature which can help with that; just enter the zip code, and narrow the search (child/teen, CBT), and a list of local providers comes up.  I have found this to be a very valuable resource, especially when I see patients who are not from my area. I also refer families to their insurance carrier, to find providers who are in network.  I encourage families to understand that finding a therapist is a process, which may involve many phone calls and leaving messages. It can be quite frustrating.

Concerning medications, I have an informal rule that I will not start an anxiolytic medication unless there is counseling set up or actively being pursued.  I think it is important to send the message that there is work to be done to manage anxiety, and the more work the patient is willing to do, the less medication (and side effects) is needed.  Also SSRI/SNRI medications are not without risk, including the black box warning of suicidality in the young and teenage population.

There are definitely times when both counseling and medication is needed, but in my opinion, the therapy is most important. Why? Because therapy/CBT can help our young patients develop the skills and resilience to face the challenges of life. Kids and teens need to develop their inner resources to deal with their quickly changing environments, without becoming overwhelmed or despondent, or falling into other unhealthy coping strategies, such as addiction. As providers, we owe it to them to steer in the right direction as best we can, to speak up when we think psychological help is needed, and to support our families in their healing journeys.

Off the soapbox now……………

My next posts will be about another primary headache, new daily persistent headache (NDPH), a very challenging headache diagnosis. Stay tuned………