Introducing……… New Daily Persistent Headache

In this post, I am going to introduce you to another primary headache, new daily persistent headache (NDPH). This primary headache is not often seen in primary care, but I think our clinic population has about 25% of teens with this diagnosis.  There’s a good reason why a referral to a specialty headache program is important for these patients.

Imagine being a 13 year-old girl, just getting over a viral illness, and suddenly finding yourself with a constant, unremitting headache. At first you and your family think, it will go away soon, probably related to having just been sick.  But it doesn’t go away………….. for months or years.  That’s NDPH.

NDPH is an unrelenting headache that develops rapidly, with the person often knowing the exact day when it began, and having a continuous headache from that day. It often happens in a person with no past history of headaches. It neither a migraine or tension-type headache, but begins as a new headache. This is a very difficult headache for patients and families as it often does not respond to treatment.  It is called Persistent because the average length of this headache can be up to 3 years, or more. Incidence is reported at 2-4% of patients with headache, but this is most likely underreported, as the headache is often unrecognized for what it really is. It is seen in both adults and adolescents, but more frequently in teens.

NDPH is characterized by:

  • appearing without warning;
  • often following a viral illness, several concussions, or for no reason at all;
  • Constant headache that lasts for more than 3 months from onset (within 3 days);
  • At least 2 of these: felt on both sides of the head; feel pressing or squeezing (not pulsing); mild to moderate pain; not worsened by routine physical activity;
  • Both of these: light or sound sensitivity or mild nausea AND NOT moderate or severe nausea/vomiting;
  • All other reasons have been investigated and ruled out.

For some patients, there can be migraine-like symptoms, such as light and sound sensitivity, and nausea. For some, there can be tension-type headache symptoms, such as mild-moderate pain, non-throbbing on both sides of the head. NDPH does not respond to the usual headache prevention medications or the usual rescue treatments and medications.  Unfortunately, many patients can become disabled with NDPH.

So this teenager comes into your office, with the complaint of constant headache for the past few weeks. What do you do? First you rule out a secondary reason for headache, perhaps do some labwork (CBC, chemistry, B12, thyroid, celiac, etc), brain MRI, thorough patient and family history and physical, making sure there’s nothing else going on. The diagnosis of NDPH is a diagnosis of exclusion.

Once the secondary generators have been ruled out, you think about the primary headaches. Migraine and tension-type headaches generally start as episodic, not constant or chronic. So even with a strong family history of migraine, that’s probably not what this is.

So it’s a constant headache, moderate in pain (though with some spikes of more severe pain), probably associated with environmental sensitivities and nausea. It’s a terrible diagnosis. You have to tell the family that the usual headache treatments and medications don’t work well, that there is really no cure except time and adherence to a multidisciplinary approach to care and wellness.

And then you refer them to a specialty pediatric headache program because the family and you will need all the support you can get. In the meantime, you help them work on lifestyle- good sleep, hydration, healthy diet, and staying active.

As you can imagine, this is quite difficult. It is especially hard when there really doesn’t seem to be a reason (virus, too many concussions). In my experience, when there does not seem to be an identifiable cause for the NDPH, these particular families have a VERY hard time coming to acceptance and embracing the multidisciplinary approach. They are always ‘searching for a reason’, which can often send them down some unhealthy and unhelpful rabbit holes. That’s why you send them to a pediatric headache center, where this diagnosis is well known.

The key here is early identification of NDPH, as soon as you suspect it is not a standard primary headache. Delays in diagnosis often lead to unnecessary medication and treatment trials, increased frustration and desperation on the part of the family, and an increased level of disability for the patient.  This is a real problem without an easy answer.

I know from personal experience that partnering with the family, through all the ups and downs, makes a difference in outcomes and level of disability. You stick with them, gain their trust, and offer lots of support.  One thing I will tell my patients in particular is that ‘I believe that their headache will resolve someday. I don’t have a crystal ball to say when, but I believe they will get better. And I have seen many patients who really did get better’.  This can help give them hope.

Hope is so important and powerful. I often refer to my colleagues and myself as chief cheerleaders for these families. They’ll say ‘we know there’s not much out there that can help, but we come in anyway, so you can give us hope’.   Recovery is possible with hope.

I will further review options for dealing with the patient with NDPH in my next post.

All about the Migraine….part 2

So you have identified one of your patients as having migraine. Now decisions have to be made about management. Important points to consider are: frequency of migraine, intensity of pain and/or associated symptoms, triggers, and lifestyle factors.  Unless the patient is presenting with frequent or intractable migraine several times/week, the first things to review with the patient and family are basic headache-healthy lifestyle guidelines.

What are the most important lifestyle factors to consider in migraine (or any headache for that matter)? Hydration, diet, sleep, exercise/activity, and stress management.  Helping families understand what they can do to reduce migraine is empowering and creates a sense of partnership.  Some families may want to go straight to daily preventive medications, but most would rather start with the basics.

Suggested recommendations:

Hydration is probably the most important aspect of preventing migraine in kids and teens.  I usually recommend that patients drink the equivalent of their weight in kilograms (50kg = 50 oz), or half their weight in pounds (100lbs = 50 oz). This works for patients up to 80kg; above that weight, I will recommend 80-100oz/day.  I have found that families need a real number to aim for, rather than just saying to ‘drink more’, which greatly improves compliance.  I strongly encourage bringing a refillable water bottle to school daily, and bringing it home empty. Most bottles are 20-24oz, and kids who drink during school generally meet their hydration requirements.  Appropriate hydration includes water, seltzer, electrolyte-rich fluids, milk, juice, and do not include caffeinated beverages or soda. Neither sugary nor sugar-free sodas are great, because both high sugar and artificial sweeteners are migraine triggers. If the kids balk at water, a little juice added can help. Some schools do not allow water bottles, but a note from a provider will help (or it can be a part of a 504 education support plan).  I encourage using electrolyte-rich fluids around heavy athletic activity or during migraine, but not as a daily beverage- can lead to obesity or dental caries due to sugar.

Diet is important in a variety of ways.  For some migraineurs, there are foods that can trigger migraines and need to be identified and avoided. There are lists of these foods readily available and I will attach a list here (Headache Elimination Diet).  I tell kids that as a person with migraine, they have to be a detective for their triggers, again empowering them to have agency in their own health. In addition, ensuring regular meals- breakfast, lunch and dinner plus snacks- is key in preventing migraine.  Meal skipping can trigger migraine and many patients have learned this the hard way. Also a diet as varied and nutritious as possible is just good for health.  Some children are very selective (‘picky’), and can be lacking in essential nutrients.  Kids who eat a ‘beige’ diet, eating few if any vegetables or fruits, probably would benefit from a multivitamin.  A common migraine supplement is vitamin B2 (riboflavin) and children with limited diets would benefit from a B complex vitamin.

Getting enough sleep is crucial in the prevention of migraine.  Depending on their age, children and teens need between 8-12hours of sleep per night.  In addition to getting to bed on time, using good sleep hygiene, including bedtime routines and managing time on electronics, is key to adequate sleep.  In our busy, over-scheduled lives, prioritizing sleep can be difficult.  Families just need to understand how inadequate sleep can affect the migraineur.  This might mean that the tween avoids sleepovers, as she knows that a migraine is likely the next day. Or that strict limits on electronics- using phone, tablet, video games, etc- are consistent and enforced. There are many barriers to getting enough sleep, including heavy homework loads, multiple sports or other activities, as well as early start times for high school.  Many communities are beginning to address the start time issue, but families are encouraged to be proactive in setting limits on participation in activities. Inadequate or disrupted sleep is a common migraine trigger.

I’ll continue to review lifestyle factors in the next post. Most of the recommendations apply to all headache types for the most part and are worth a discussion with all families.

All about the Migraine…. part 1

The 3 most common subtypes of primary headaches commonly seen in pediatric patients are: migraine, tension-type, and new daily persistent headache. Children often have a combination of types, such as chronic mixed type headache, which generally combine migraine and tension-type headache. All primary headaches present differently and are often treated differently.  Migraine is a well-known type of headache, so I will cover that first, in a number of posts.  There are also migraine variants,  particular to children, such as abdominal migraine and cyclic vomiting syndrome.

Migraine is a neurologic disorder, characterized by headache attacks. Headaches are episodic or chronic, are recurrent, can last from 4-72 hours, with moderate to severe throbbing pain. Migraine pain occurs due to dilation and inflammation of the intracranial blood vessels, which irritates the adjacent nerves.  Pain can be felt in one location, such as behind the eyes or temples, or one-sided, or everywhere (holocephalic). Pain can occur suddenly or be preceded by warning symptoms, called an aura.  Along with head pain, patients can experience nausea and/or vomiting, photophobia, phonophobia, osmophobia (sensitivity to smell), pallor, lightheadedness or dizziness, visual changes (blurred vision, loss of vision, seeing colors), hearing changes (tinnitus), paresthesias, focal numbness, fatigue, sweating, and scalp sensitivity (allodynia). The only constant in migraine is that every migraine patient experiences their migraines differently- different location, constellation of symptoms, triggers.  Diagnosis is made based on symptoms and history and in the majority of cases, migraine is clearly identified.

Migraine is often found within families, passed genetically through generations.  The incidence is more common in women (17%) than men (6%). Most people have their first migraine between the ages of 6 and 25 years, so it is likely that their pediatric provider will be the first person to evaluate for migraine. Imaging is not required to diagnose migraine, especially if there is a strong family history.  However, imaging (MRI) can be helpful for presentations without family history, unusual, complex or variant-like symptoms. Most families are comfortable without imaging when there is family history of migraine.

Most migraineurs have missed school, social or sports activities, or work during a migraine, and about 50% have difficulty functioning at all during an attack. As you can imagine, having 1 migraine episode per week and having to miss 1 day/week of school, is going to have significant consequences.

The next step, after making the diagnosis, is to decide on a treatment plan.  Does this patient need a preventive or daily medication? What is the rescue plan? And even more importantly, what about the lifestyle factors that can trigger migraine or reduce the incidence of migraine?  We will start to cover this topic in my next post.

Headaches in the community

Headache is one of the most common problems seen in the primary care office. It is often a chronic complaint, not easily managed, and often an unsatisfying experience for families and providers.  You can’t cure headache like an ear infection, it will always come back in some form or another.  And while headache is technically a neurological problem, at its heart, headache is a chronic pain problem. It is not as glamorous or interesting as many neurological conditions. Many neurologists are not as interested in headache as they are in other conditions. Patients and families are often challenging and the issues are often multi-factorial, comprehensive and complicated.  Chronic pain is a field that takes a certain mindset and approach, not for the faint-hearted. I believe that a multidisciplinary wellness approach to care is best, and our job is to guide the families to adopt that approach.  This is time consuming, requiring a lot of counselling and coaching, to achieve good results, and most importantly to prevent disability.

Fortunately, for those of us who work in the headache field, there are many wonderful patients and families, more than happy to work as a team to achieve good results. You can have your chronic migraine patient with several comorbidities including inadequately treated psychiatric issues and significant disability as your first patient of the day. Then you can have a patient with episodic migraine or menstrual migraine, with many family members with migraine, has learned their triggers, has a rescue plan, and is doing well overall. It’s really a mixed bag in the headache world, which makes it a bit different than the usual chronic pain patients, especially in pediatrics. It is also more enjoyable.

I think the most important thing is being able to accurately make the diagnosis, identify appropriate treatment, and obtain buy-in from the patients and families to accept the multidisciplinary approach to care.  Since I work in a tertiary care outpatient clinic setting, our patients have already been evaluated, tried some medications or treatments, and have not had success. Patients may have had inadequate medication trials, been given incorrect diagnoses and treatments, and establishing trust is difficult. In these days, instant gratification is desired, and this is just NOT a hallmark of headache care. Daily medications can take a month to see effectiveness (or not). Lifestyle changes take time.  Learning cognitive behavioral skills take a while to become effective.  Establishing a healthy headache lifestyle along with adequate treatment options is a marathon, not a sprint. There’s a lot of trial and error.  Without the families’ trust, this journey is made even more difficult.

For the community provider, having some good baseline knowledge of headache, is a great starting point.  In the next posts, I will review the primary headache in pediatrics. Learning to recognize the specific headaches and common treatments, both preventive and rescue, is the bread and butter of headache medicine.

 

I have a headache!

 

So your young teenage patient comes in the office with a primary complaint of headache. This is something that happens very frequently.  In fact, headache is in the top 5 diagnoses for children and teens, occurring in 75% of teens and 25% of younger children.  Kids miss school, lose time with friends and in activities.  Family life can be significantly disrupted by headaches.  Everyone in the family has decreased quality of life, and concurrently increased environmental stress.

And with this complaint, there are many things to think about. Is this a primary headache, such as migraine, tension-type, or new daily persistent headache? Is this a secondary headache, such as a headache caused by something serious (brain tumor, brain bleed or meningitis), or less serious (allergies, sinus infection, virus)? Is this the first time your patient has complained of headache or the 20th time? Are there any pre-existing comorbid conditions?   The most important thing is to distinguish between primary and secondary headaches, and then go from there.  You absolutely don’t want to miss that secondary headache diagnosis.

You decide that your patient is constitutionally well, has no signs of serious illness, injury, or viral infection. This is most likely a primary headache. And now the fun begins!

Being a provider for patients with headaches is like being a detective. And it helps if your patients and families join you in your detective work.   I always talk with families about their role, especially with data collection, because good data helps guide care and interventions.  It also encourages the partnership between provider and family, building that relationship.

One of the hardest things about being a headache patient is that it’s an invisible affliction.  Nothing is more important to a headache patient than having a provider who understands, is supportive and knowledgeable about their health issues. It’s the ultimate key to improvement in health outcomes and lifestyle changes.