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Chronic Migraines
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What to do when nothing is working
Expert Answer: Intractable Chronic Migraines
Botox Approval for Chronic Migraine
Nerve Stimulation for Chronic Migraine
Surgery for Chronic Migraine
Living with Chronic Migraines
Recommendations for Chronic Migraineurs
Chronic Migraine & Stigma
Chronic Migraine & Social Security Disability
Chronic Migraine & Child Custody
The Family Medical Leave Act & Migraine
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My Story: Chronic Migraines & A New Life
Cindy’s Journey with chronic migraines
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. For more on this, see Migraine Management Essential 1: Diagnosis and Doctors.
- 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. For more information on triggers and identifying them, see Migraine Management Essential 3: Trigger ID & Management.
- 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. Take a look at our Migraine.com Journal.
- 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. That’s part of the service you or your insurance company are paying for. 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.
Migraine is a disease. That’s something we have to remember. Like diabetes, asthma, and other diseases, Migraine disease can be difficult to manage. It can be done though. Remember that you’re not alone. Find other Migraineurs to talk with for support. Keep learning. Find a good doctor who really understands Migraine disease and how to treat it. Be proactive. There are many ways we can work with our doctors and gain control over this disease.
____________
Resources:
World Health Organization, Lifting the Burden. “Atlas of Headache Disorders and Resources in the World 2011.” Geneva. World Health Organization. May, 2011.
Live well,
© Teri Robert, 2011
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"I had my first migraine when I was 12. I thought I was going blind, the spots in my vision all grouped together and everything went black. The pain was intense and felt like my head would crack open above my right eye." 
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Hi Teri – So I took your advice & I had a lumbar puncture to rule out IIH. I’ve had migraines for 20+ years, with them being chronic for approximately half that time. The opening pressure was normal (12), but I was just told that the CSF total protein was below normal. The normal range is 15 – 45 & mine was 12. It seems that the primary reason for low total csf protein is overproduction of csf, perhaps due to csf leak, which can be caused by IIH. However, the opening pressure was normal. The only thing my doctor said was that there could have been an error in the reading of the opening pressure. Do you know if it’s possible to have normal opening pressure, yet still have a csf leak? I can’t seem to find much info on the subject. Any help is greatly appreciated.- Kim
TechGal02,
Thank you, and you’re welcome. I’m sorry your Migraine are giving you so much trouble. If you need help finding a specialist, let me know, and keep me posted on how you’re doing. OK?
Teri
This was very helpful, thank you. I actually came to this site today because I have another chronic migraine and I’m not able to take triptans (I’m allergic to it, go figure!), I’ve noticed the majority of my chronic migraines get triggered in the morning and sometimes after work, the other day I ended up getting one at work but i suffered through it till I got home. Hopefully I can learn more from this site on how to control my migraines, its almost daily now that I get them (the chronic ones, once-twice a month), once my health insurance kicks in I’m gonna go try to find a good doctor that specializes in migraines, so hopefully they will be able to help too! Have a good day, and hopefully a migraine free day!