I have been told there is «nothing else to do»…now what?
Are there people with migraine who just don’t get better despite appropriate treatment?
Every disease has severe forms. In every disease, there are people who do not respond to treatments. People with cancer still die if the treatments do not work. People with refractory migraine sometimes keep suffering for years.
That may sound like a grim statement, but it’s important to say it because there is a consequence to it. It means that some people suffer from chronic migraine despite all their efforts, despite all treatments, and it’s NOT. THEIR. FAULT. And it is not the physician’s fault either. Refractory migraine is a disabling neurological condition.
Should I just give up?
Absolutely not. Hope is necessary and important. But sometimes, people with refractory migraine can gain from a certain degree of acceptance. Irrealistic expectations may lead to an ongoing feeling of frustration, guilt, shame etc that is emotionally draining. Working on this can improve your quality of life. Psychologists, coaches and patient support groups can help.
How can I be sure that I have tried all treatments available?
Some lists of advertised «migraine cures» are very, very long. Usually, walking the migraine path starts with «guideline, official, scientific approved» treatments we may call «first line». Then, there is the second line (less evidence). Then, the third line (even less evidence, risks, side effects». Then, you enter what one can call the «evidence-free zone». We may name this the «at your own risk» zone. But when you suffer, you are ready to take risks. The goal of the Migraine Tree is to provide an overview of all options that are proven and discuss options that are not proven with a cautious attitude.
I would expect my physician to propose more options
Patients have every right to seek more options. This being said, doctors are trained to prescribe treatments that are «evidence based», tested in clinical trials. Once they have recommended what they are allowed to medically recommend, they may not feel comfortable recommending «unproven» approaches. When «official treatments» have failed, the physician might tell the patient that «there is nothing else to do». This is a very difficult situation, on both sides.
Why aren’t there more options?
While it is normal to ask for relief and solutions, it’s important to be aware of the limits of physicians once they have proposed the treatments supported by science. Also, some treatments are just not available in Canada for different reasons and your physician cannot change this. If your physician has offered what (s)he can, it might be reasonable to stop the follow-up. An opinion from a Headache Specialist can be an option, but there are definitely not enough Headache Specialists in Canada and waiting lists are long.
What can I do if my physician has no more options for me?
- Remember that physicians have limits to what they can do. Don’t blame them too much for this.
- Consider an opinion from a specialist with more expertise.
- Work on acceptance and make sure that you are not loosing precious energy. Reset expectations, but do not lose hope.
- Even if the medical follow-up is interrupted, support should be available. This can be provided by other health care providers (eg psychologist) and patient groups.
- Even if you are eager to find relief, be careful about «miracle claims» and «cure advertisement».
- Keep informed about new treatments. The science in the field of headache is virtually exploding and new options are available and in development.
- Consider getting involved in advocacy for better education on headache and for access to new therapies in Canada. The patient voice is important for politicians, and in our public system it’s very important.
Migraine Canada wishes to help people with migraine by providing information and by advocating for better access to treatments.
Dodick DW. Reflections and speculations on refractory migraine: why do some patients fail to improve with currently available therapies? Headache. 2008;48(6):828-37.
Robbins L. Refractory migraine. Headache. 2015;55(4):575.
THE MIGRAINE TREE
- ACUTE TREATMENTS
- DEVICES AND NEUROMULATIOIN
- PREVENTIVE TREATMENTS
- PROCEDURES AND INJECTIONS
- SELF-CARE AND LIFESTYLE
- SOCIAL LIFE