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.

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