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!

Tension-type headache treatments

So you have diagnosed your teenaged patient with tension-type headaches, what are the next steps to prevent and treat them? The same questions apply to TTH as to migraine: 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 TTH?

Again, deciding on a preventive or daily medication depends on how much impact the TTHs are having on your teen patient’s life. Anything more than once per week deserves this conversation. And your choices for medication can be different than for migraine. When you think about the main causes for TTH, you think about muscular tension which can lead to muscle spasm and occipital neuralgia, and stress and anxiety.

For muscle tightness and/or spasm:  Oftentimes patient with TTH will awaken with a stiff neck and back or headache. Muscle relaxants given at bedtime can reduce neck tightness overnight, leading to less tension overall.  The most typical muscle relaxant we use is tizanidine (Zanaflex), an alpha2-adrenergic agonist, used for muscle spasticity. Usual dosage is 2-4 mg at bedtime. Main side effects are drowsiness, dry mouth, and weakness. It is used with caution for patient with impaired renal function and not advised for patients with impaired hepatic function.  If your patient has difficulty with sleep, tizanidine can also help with this. Cyclobenzaprine (Flexiril) is also a musculoskeletal relaxant, with a similar side effect profile and precautions. This medication is not recommended to be used for more than 2-3 weeks, and we do not generally use it.  Another option is diazepam (Valium), a benzodiazepine, but we almost never use it due to the risk of dependence and CNS depression. It is not a good choice.

What else can be done besides medications for tight muscles in the neck and upper back? The many different options of body work, such as massage, cranial sacral massage, chiropractic, yoga and Physical Therapy are very useful. I especially like PT, as there is a component and need for self-care required.  Sending your patient for PT for head and neck stretching and strengthening is a very useful therapeutic option.  PT is usually easy to find locally, though does require co-pay every time you go.  The patient needs to do their home exercise program as well for it to be effective.

A few years ago I recognized that for some families, doing PT was difficult- either because of the co-pay or the time commitment/hours of operation of the PT center. It just wasn’t happening and it needed to. With my yoga teacher, I developed a home head and neck stretching program to supplement or replace PT (for patients who were not going anyway).  I taught the exercises in the office, gave the family written instructions and a firm ball to use.  We collected data in follow up and the results were great.  We surveyed 43 patients, 36 of whom did the exercises at least once/week or more.  Results revealed that 78% had reduced muscle tension, 22% had reduced headache and 30% just felt better.  The more the kids actually did the exercises, the more benefit they reported.   I demonstrate the exercises,  give out instructions and balls regularly for those who would benefit, and for those who actually do the exercises, it is very helpful. The balls we used are called ‘Pinky’ balls, firm like a lacrosse ball, inexpensive, and can be found easily.  Here’s a link to the instructions:  Pinky ball Head and Neck exercises

For TTH with occipital neuralgia: Of all the previously discussed medications useful for headache, Gabapentin (Neurontin) is the one I use most often.  It is an anticonvulsant and is quite effective in dealing with neuropathic pain anywhere in the body. So it makes sense that it would help with occipital neuralgia. Gabapentin does cause sedation and mental clouding, may lead to weight gain. Dosing is at bedtime to start, though depending on toleration, it can be given up to TID. At most I will use BID dosing (bigger dose at bedtime), as that midday dose is often missed. It comes in capsule form, smallest dosing is 100mg, though it does come as a liquid, helpful for younger children. Pregabalin (Lyrica) can be used as well, but there is abuse potential so it is controlled substance. Generally the insurance companies require failure with gabapentin before approving Lyrica. It can be hard to obtain and I do not use it often.

In a specialty headache or pain program, there is the option of occipital nerve and trigger point injections, done with local anesthetic (lidocaine and bupivacaine +/- steroids). IN TTH, the occipital nerve may be inflamed. Trigger points (areas within muscles that are very irritable) will contribute to tension-type headaches and myofascial pain.  The areas around the greater occipital nerve, as well as any trigger points in the upper cervical, trapezius muscles are infiltrated with local anesthetic.  Initially, patients feel ‘heavy-headed’ or numb, which passes by the next day or so.  The anesthetic medication blocks pain receptors within the nerves surrounding the muscle, thus reducing the pain signals sent to the brain.  Your patient may feel immediate relief of pain, and then (hopefully) a reduction in neuralgia and headache.   This procedure is done in a series of 3, spaced 4-8 weeks apart.  I usually encourage them to try it at least twice to evaluate whether it is helpful. Some patients have significant improvement with this procedure; some have no benefit at all.  It is generally well tolerated.

I am actually amazed at how well the teens do with this procedure. They are in my office with a parent, we do a breathing exercise throughout the procedure, and only do as many injections as they can tolerate. Even my most needle-phobic kids can do it, mainly because they cannot see what I am doing and are distracted by the breathing exercise. After we complete the injections, I insist they go to the ‘spa room’, lay down on our Biomat (like a large heating pad) in dim lighting for 15-20 minutes with relaxing ambient sounds and aromatherapy, and drink a Gatorade. Many fall asleep and are very relaxed when they leave. I know we are very lucky to be able to offer this kind of experience.  I think it actually increases the therapeutic benefit of the procedure.

In my next post, I’ll talk about appropriate rescue medications and treatment for underlying anxiety, which often needs to be addressed for kids with tension-type headaches.

Chronic migraine, what to do?

So your patient has developed chronic migraine, which is defined as 3-4 migraine per week, 15 migraine days per month, and is predictably miserable. Developing chronic migraine does happen in pediatrics, but it happens much more often in older teens and adults.  You’ve done what you could to prevent it from happening: did a course of steroids, tried increasing their daily medications, worked on lifestyle issues and even sent them to the ED for a cocktail to break the cycle. The ED visit did help but the effect was not sustained, and your patient is back with frequent migraine again. Now what do you do?

I would suggest that this is the time to refer them to a headache specialist, in a clinical setting where there are experienced providers (MD, NP, psychology), skilled at dealing with chronic headache.   Headache programs are usually staffed by a neurologist, or possibly a pain specialist (and rarely by someone who is both) and also a pain psychologist.  Not every neurologist is interested in caring for kids with headaches but pediatric headache programs can be found all across the country. If there are no pediatric headache specialists in your area, there may be an adult provider willing to see an adolescent .  For children, it might be hard to find an alternate provider.  Pediatric headache programs are most often found within a university teaching hospital setting. Some are found within neurology or within a pain (anesthesia) program.

When patients are referred to our headache program, the initial evaluation is done by the pain/neurologist and a pain psychologist.  There are some up front data collection, including psychological measures (FDI, RCMAS-2, CDI-2, fear of pain index, pain catastrophizing scale), done online, prior to the visit. Their medical records are also reviewed. The families see the neurologist first for full history and physical, and then they seen by the pain psychologist- patient and parents, separately and together.  Then a plan is formulated and reviewed with the family by one of our PNPs.  The plan is usually a combination of medications, lifestyle measures, complementary therapies and often a recommendation for psychology for cognitive behavioral therapy (CBT) or physical therapy.

The overriding message to the patients and families is that this is condition that responds best to a multidisciplinary approach, each part of the plan is important. As you all know, each family is different and their expectations and culture vary widely.  Some families are more than happy to change medications, start supplements, even do PT for head and neck stretching and strengthening.  They may rather just focus on lifestyle measures, like working on hydration and sleep.  One of the hardest things to promote is psychology and CBT. Sometimes the family is well aware of mental health concerns, confirmed with the data from the psychological measures and meeting with our psychologist. They are open to the idea and welcome suggestions for where to seek counseling.

But it is often a hard sell to either the parent or patient or both. I encourage that even if there are no serious psychological challenges, having frequent migraine is a source of stress, and can get in the way of participating in life. Learning CBT can provide the teen with better ways to cope with the pain and underlying anxiety and stress. When meeting with particular reluctance/resistance on the part of the teenager, I emphasize that they are not going to ‘talk about your feelings’, but rather to learn concrete skills to use at times of increased pain and stress.  Sometimes the boys are more reluctant (but not always), and the suggestion to see a sports psychologist is better received. There are phone apps that can be used to augment or introduce the CBT exercises. In the end, there is no better way to engage in cognitive behavioral therapy than with a skilled therapist.

Treatments options for chronic migraine:  There are treatments available in a specialty clinic that are not easily obtained in the community. Providers are more familiar with different classes medications used for migraine.  We might be more comfortable in increasing dosing to a more therapeutic level or use medications in combination.  We might also introduce psychopharmacology to the treatment regimen, if indicated. Getting a good medication history is important to decide if the patient actually had an adequate clinical trial of a medication.  Sometimes patient will come in having tried 4-5 daily medications, over the course of 6 months.  Unless there are significant side effects, brief trials are not adequate to determine whether a medication would be helpful. Unfortunately, families and/or patients can have a ‘quick fix’ mentality and inability to tolerate any symptoms or pain, which leads to changing medications before really determining if they work.  Any medication used as a migraine preventive needs to be trialed for at least 2 months, starting low dose and increasing slowly as tolerated. This same approach should be applied to psychopharmacology as well.  This can be hard to communicate to families but necessary.

There are several inpatient options available for chronic or intractable migraine.  Patients can be admitted overnight for the typical migraine cocktail, using ketorolac IV q6h for 24hours, plus adjuncts and steroids. This can help to break a bad cycle, and generally well tolerated.  Also, IV Depakote can be added with mixed effects, followed by 3 days of oral depakote.

Another option is for the patient to be admitted for several days for IV DHE (6 doses, q8h).  This is less well tolerated, with side effects that need to be treated.  Nausea is significant and DHE is generally pretreated with metoclopramide and Benadryl, compazine, ondansetron or even lorazepam.  This can be effective in resetting the migraine pattern back to episodic. Not always pleasant but worth a try.

There are 2 outpatient injection procedures used to decrease the chronicity of migraine.  First there are occipital nerve and trigger point injections, done with local anesthesia (lidocaine and bupivacaine+/- steroids).  The occipital nerve can be inflamed. Trigger points (areas within muscles that are very irritable) will contribute to migraine, other headaches, and myofascial pain.  The area around the greater occipital nerve, as well as any trigger points in the upper cervical, trapezius muscles is infiltrated with local anesthetic.  Initially, patients feel ‘heavy-headed’ or numb, which passes by the next day or so.  The anesthetic medication blocks pain receptors within the nerves surrounding the muscle, thus reducing the pain signals sent to the brain.  Your patient may feel immediate relief of pain, and then (hopefully) a reduction in incidence of migraine.  Some patients have significant improvement with this procedure; some have no benefit at all.  It is generally well tolerated.

Botox© is the only treatment approved by the FDA for chronic migraine for patients over 18 years.  There are strict criteria for its use and generally insurance companies stick to the rules. We have been able to get approval for a few 16 year olds but this is rare. The criteria includes: 15 migraine days/month, migraines lasting up to 4 hours, failure of several preventive and rescue medications. It is not approved for episodic migraine. Another office procedure, the patient will have 155units of Botox© injected via a 30G needle in 31 specific locations on the face, cranium and neck/shoulders, every 3 months. As you can imagine, this is not the easiest thing for a teenager to go through, causing distress and tears. However, in our practice, we have found it to be fairly effective, with decrease in migraine frequency and intensity in many patients, especially after the 2nd procedure.  It is also generally well tolerated.  Most kids tell me that they hate getting the Botox©, but the results make it worth it.  They joke that they know when it’s time to come back when they move their eyebrows again. I was initially skeptical, wondering if it really worked.  But after performing the procedure many times now and seeing the results, almost all positive, I have become a believer.  There is nothing better than getting kids back to functioning.

Your role: So what happens after your patient is seeing a headache specialist? Does this mean you no longer have a role in managing your patient’s migraines? Of course not! As a headache specialist, I enjoy partnering with primary care providers in the overall care of these patients. The families may come from far away, and only come in to see us every 3-6 months. Their community provider is crucial in supporting the families during the difficult time of chronic migraine. We welcome contact, questions and updates.  These families need as much support as they can get, to keep OUR patient functioning, and avoid disability.

So that’s it for now about migraine. I plan to do a case study next to show migraine management in practice.