Recommendations for Those with Chronic Migraine

July 6th, 2011 - Posted by Teri Robert

Probably the most difficult time of my life was the period when my Migraines were chronic. Migraines are considered chronic when you have a Migraine 15 or more days a month. Essentially, you have a Migraine more often than not. Chronic Migraines make it difficult to carry on with your life, and they make it difficult to stay positive and keep working toward a better treatment regimen.

It took time, perseverance, and more patience than I ever thought I could muster to get through that period of time, but I did get through it. Here are some recommendations I’d like to offer to those with chronic Migraine:

Don’t give up. Many of my recommendations will come back to this one. For most of us, if we give up, it’s over. Our families and friends can’t know how we’re feeling, make doctor’s appointments for us, and do the work for us. Neither can our doctors. It’s up to us to keep fighting and working with our doctors as treatment partners as we look for effective Migraine management. Nobody can do that for us.

Work with the right doctor. A recent report from the World Health Organization revealed that most doctors get four hours of education about Migraine and other headache disorders while in medical school. Neurologists get an average of 10 hours. That means that many of us with chronic Migraine need an actual Migraine specialist, and we need to remember that neurologists aren’t necessarily Migraine specialists, and Migraine specialists aren’t necessarily neurologists. If you’ve been working with a Migraine specialist or another doctor who really understands Migraine for a reasonable period of time without making progress, there’s nothing wrong with consulting another specialist for a second opinion. No doctor is the right one for every patient.

Don’t stop trying to identify triggers. It can be difficult to identify triggers when Migraines are chronic or daily, but it’s still worth it. If you find that some of your triggers are avoidable, you may be able to reduce the number of Migraines you have.

Be an active treatment partner. Nobody knows our bodies like we do. I was recently at a conference where the statement was made that during a doctor’s visit, there are two experts in the room. The doctor is a medical expert, and the patient is an expert on their body. We can’t be passive about our treatment; we must be active participants. Chronic Migraines can wear us down, but we have to stay involved in our care and treatment. We need to actively discuss our options with our doctors so that they’re making decisions WITH us, not FOR us.

Continue your Migraine diary or journal. It’s important to record when we have a Migraine, what the trigger may have been, what medications we took for it, our pain and disability levels, and other information. Diaries can reveal patterns and other information that can be helpful in refining our Migraine management regimen.

Continue learning about your Migraines. Knowledge is empowering. Understanding our Migraines (and any other health issues we have) helps us work better with our doctors. We can’t call our doctors every time we have a Migraine. We have to make some treatment decisions, such as when to take what medications, ourselves. To make good decisions, it’s important to understand our Migraines. And, here’s a bonus – Studies have shown that patients who are educated about their conditions have better treatment outcomes.

Try new treatments with a positive attitude. In psychology, there’s a principle called “self-fulfilling prophecy,” which essentially means that if we enter a situation thinking it’s going to go a certain way, it most likely will. It’s an excellent demonstration of the power of our minds, and it can apply to our treatments. For example, if we focus on the potential side effects of a medication we’re going to try, certain that we’re going to have those side effects, we most likely will. Our minds will produce the side effects even if the medication doesn’t. Certainly, we should be aware of the potential side effects and negative impacts of any treatment we’re going to try, but we need to remember that they’re potential, not certain, and maintain a positive attitude.

Ask your doctor to rule out idiopathic intracranial hypertension. Idiopathic intracranial hypertension (IIH), aka pseudotumor cerebri, is a disorder caused by poor absorption of cerebrospinal fluid (CSF), resulting in high CFS pressure. It can trigger Migraines, so if your Migraines are frequent, and you can’t identify your triggers, it’s worth asking your doctor to rule out IIH. It’s important to know that the only way to definitively rule out or diagnose IIH is with a lumbar puncture (spinal tap). Some people with IIH will show papilledema (swelling of the optic nerves), but not all do.

Don’t hesitate to ask questions. When you see your doctor or another member of your health care team, ask any questions you may have about Migraines, your treatment, or related issues. If your doctor doesn’t like answering questions, it’s time for a new doctor.

Don’t give up. Yes, it all comes back to this one. If your doctor isn’t able to help you, find a new doctor. When trying a new preventive medication, remember that it can take up to three months to know if it’s going to help, so don’t give up on it too soon. If several preventive medications haven’t worked, don’t give up hope. There are now over 100 medications in use for Migraine prevention, making it pretty much impossible to have tried everything. It would take more than 25 years to give each of those medications a fair trial.

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