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.

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.

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.