One of the most helpful things that has emerged in the past few years as migraine advocacy communities have emerged and grown, is the sharing of information about medications. While generally a positive thing, there are also negative aspects. This is seen most clearly in the discussion of migraine medication side effects (or “adverse events”), especially as it relates to newer medications.
Are Older Migraine Medications More Safe Than Newer Ones?
It has been exciting to see the FDA approval of multiple new migraine medications for both abortive and preventive treatment since 2018. However, along with those new medications has come the awareness that doctor-to-patient information is often limited, and real world experience often does not match up with previous clinical trials. In many online migraine communities, the excitement about new options was quickly joined by concerns about unexpected side effects, side effects about which patients were not informed ahead of time or believed when they reported them. These concerns then quickly morphed into the myth that the new medications had more side effects than the older, more traditional ones, and therefore were less safe.
It is true patient voices need to be heard regarding side effects of the newer medications. This is important so that future patients can be better informed of potential side effects and ways to manage them. It is also important so that headache doctors will be more informed about real world experience. This will help enable constructive conversations about ways to potentially manage side effects, as well as what to do when they are intolerable. A balance needs to be struck between this fight to have the real world patient voice heard, and the myth that the new medications are less safe than the old ones.
How Do I Balance Risk vs Benefit?
Key to understanding safety issues is the awareness that there is a very lengthy process which all medications must go through for safety and regulation. This is true for both the older migraine medications (most of which were actually NOT designed to treat migraine) and the newer ones (which WERE designed for migraine).
In reality, the older migraine medications are not without side effects, and never have been. However, with the lack of social media in previous decades, patients didn’t have easy access to that information. Beta blockers, anti-epileptics, calcium channel blockers, SSRIs, SNRIs, tricyclic antidepressants, triptans and DHE all have long lists of potential side effects. This left many migraine patients without any treatment options, often resulting in chronification of the disease.
Added to this complex situation is a widespread misunderstanding of migraine disease. Migraine is not just a headache – it is a complex neurological disease. More so, it is a progressive disease in the sense that it can chronify, which means it can get worse. That means there is a “side effect” to not treating migraine effectively. Without effective and tolerable migraine treatment there is an increased risk of attacks becoming more frequent, more severe, more easily triggered, harder to treat, and even having new symptoms. .
What If Others Are Having Migraine Medication Side Effects?
Sadly we have to weigh benefit vs risk. Trying a new migraine medication always carries with it a certain amount of unknowns. Each of us are unique in our genetic makeup, other medications we take, other chronic conditions, symptoms and severity of migraine, and more. Things to consider may include:
- Your level of toleration for a specific side effect
- The severity of your symptoms and quality of life if you DON’T try the medication
- Your overall propensity or willingness to take a risk and deal with unknowns
- Any comorbidities or other medical conditions you live with
- Previous experience with migraine medication side effects
- How good a relationship you have with your headache specialist and ability to reach them quickly if needed to follow up on a new medication
It’s important to understand that each medication affects us differently. What works for me may not work for you. What causes an intolerable side effect for me may not do so for you. Having a side effect listed on the medication guide, or hearing about it from someone else’s experience does NOT necessarily mean you will experience it, or that it will be severe.
Should I Report a Medication Side Effect?
For both new and older migraine medications it is important to REPORT side effects experienced. This is especially true for the newer medications. Not all potential side effects are listed in the medication guides – sometimes for many years. Many medication guides are updated subsequent to FDA approval with a list of “Post Marketing Side Effects” and this comes from information gleaned from many sources including extended clinical trials and reporting.
In an ideal world, it would be great to just be able to tell our doctors and know that the reporting process is being handled by them. Unfortunately, most of the time that is not the case unless it is considered life-threatening. Not only that, but if a clinical trial doesn’t show a side effect that is “statistically significant” doctors will often neither believe patients’ reports. Or note them in their medical records. Consequently, reporting generally falls on patients, adding to the likelihood of underreporting or even mis-reporting.
How Do I Report a Medication Side Effect?
- Tell Your Doctor: whether or not you have a doctor who you think will listen to you, it is still important to tell them. Talk to your doctor and ask them to write any side effects in your medical records. Even if they don’t make an official report themselves, having this information in your medical record may help with insurance appeals. It also helps doctors start to see the “big picture” when multiple patients are reporting the same things to them.
- Call the Pharmaceutical Company: each medication and pharmaceutical company has a care line or reporting line that you can call. For the newer medications you can check out the Migraine Meanderings FAQs documents. You can also go directly to the medication’s website and look for the telephone number. All reports made by patients to pharmaceutical companies are official and are not dismissed.
- File a Report With the FDA: the FDA MedWatch website provides a place to report side effects. The form is long and somewhat complex. But patients only need to complete the sections that they can about the medication. This report is then added to the FAERS Public Database.
So the next time you read a scary report by a patient about a side effect from a new medication, stop and pause. Ask yourself if you are educated about the evidence behind the treatment. Go to an online migraine group that is balanced in its approach and talks about both side effects and success stories. Consider how much migraine is impacting your life and what it would be like to reclaim some of that! Connect with others who are walking the same journey as you. And most of all, advocate for yourself by having open conversations with your doctor about your migraine attacks, and the risks vs benefits of potential treatment options.
Let Us Know
Have you heard that older migraine medications are safer than new ones? Which side effects have you experienced from migraine medications? Have you experienced more side effects from the newer meds than the older migraine medications? Do you feel that your doctor is willing to listen to your experience? Have you ever made an official report to the FDA or a pharmaceutical company?