5 Keys to Living with Migraine

37 million Americans, over 100 million people worldwide, live with migraine. Some suffer episodic attacks, occurring once or twice a year, and others like myself are chronic migraineurs, whose attacks occur many times per month. Within the migraine diagnosis, there are a number of types of migraine. What all have in common is that migraine is a complicated disease, and headache pain is just one symptom. One international researcher, Francois Cadiou, a French software designer, living and working in Singapore, points out that all migraineurs around the world are triggered by light, quality of sleep, and weather changes. After that Eastern and Western migraineurs vary in their symptoms and triggers, perhaps due to culture and perceptions, as well as by medical interventions.

I have lived with headaches as long as I can remember. What I now understand were migraines started when I was in sixth grade. Being a migraineur for over thirty-five years, I have seen many specialists, tried many over-the-counter and prescription medications, home remedies, diets, and even old wives tales. Since my strokes in 2006, the frequency and intensity of the migraines increased. At one point I was status-migrainosus for 31 days and had three ER visits during that month. I was up to fifteen-plus migraine attacks per month, daily headaches, and desperate when I decided something had to give. I needed to learn all I could about this disease and how to manage it since my doctors were unable to do so. I am now down to only four to six migraine attacks per month, which is still too many, but a definite improvement. Here’s what I’ve learned, and some useful resource links that might help other migraineurs.

  1. Learn all you can about migraine disease.
    • I attended the online Migraine World Summit in April 2016. It’s currently available to purchase the video interviews. Australian migraineur, Carl Cincinnato, organized and hosted this marvelous event of thirty-two experts from different parts of the world. I learned more about migraine in a week than I had in over thirty years.
    • Talk to all your doctors about migraine. I was actually diagnosed by an OB/GYN. I’ve been treated by family doctors, neurologists, psychologists, interdisciplinary headache specialists, physical therapists, cardiologists, and a Chinese MD who uses acupuncture. Each doctor seems to have a different piece of the puzzle, and each has offered different coping strategies.
    • Learn the vocabulary! When talking to doctors, it’s important to know that your triggers and symptoms are different, and what happens in the different phases of the attack.
  2. You are not alone! Join a migraine specific support group or discussion forum. Some symptoms and triggers are rare and I thought I was imagining things. Many people have figured out coping strategies for work or travel that I would never have dreamed of. Here are my favorite groups:
  3. Keep a Migraine Diary!! This was a turning point for me. It’s important to track weather, sleep, triggers, diet, warning signs, symptoms, and reliefs. Some people can manage this on a wall calendar, some create a spreadsheet, others like myself use specialized apps. I started tracking just sleep, medicine, and migraine days on my calendar years ago, but it wasn’t until I learned the difference between triggers and symptoms and kept a more detailed diary that I started getting relief.
    • Migraine Buddy is a free app that I use. It works on your smartphone, automatically tracks your sleep, prompts for daily triggers, allows you to quickly enter various details by touching icons, and then creates reports identifying trends, personal triggers, protectors, and reliefs. You can also see how other migraineurs in your area are faring at a given time.
    • Curelator is a research tool as well as a migraine diary. It appears to be the gold standard, but there is a cost, and it’s only available for iPhone.
    • Migraine Pal is another highly recommended app. I signed on, but it didn’t meet my personal needs as well as Migraine Buddy. You might consider it, though.
  4. Specialized eye-wear has been key for me. I find strobe lights and camera flashes will trigger immediate and violent migraine attacks. Spending too much time in artificial or florescent lighting will wear me down and bring on a migraine attack. FL-41 tinting has been designed to block the blue/gray light spectrum that has been identified to trigger migraine and epileptic attacks. I use and recommend both of the companies below. Both have great, information, products, and customer service. I have sunglasses that I wear over my contact lenses, and I also had my prescription bifocals tinted with FL-41.
  5. Make only one change at a time! When learning so much and being so miserable, it’s tempting to apply everything at once. The problem then is that you don’t know what actually works, or what makes it worse. Add one new medication or treatment per month and then evaluate. Experts say the first two weeks of any treatment is the “honeymoon phase,” and it doesn’t really count. Either excitement or hope creates a placebo effect. The following two weeks are a better test. Make sure to document what you’re doing so that you can report it to your doctor and create a management plan that works for you. Migraine is very personal and affects everyone slightly differently. The same is true for treatments. Here are some non-Rx things that help me…
    • Ginger and Lavender Essential Oil. Michael Greger, MD discussed this during the World Migraine Summit. He cited numerous studies showing ginger to be more effective than triptans in aborting attacks. Also applying lavender essential oil on your upper lip showed effective in many studies. I find these only work for migraines that come on slowly and if I catch them at the very beginning. Ginger, both candied and in tea form, works almost as well as Zofran for managing the nausea that comes with my attacks. I keep Zofran in my purse, but when home I reach for ginger first.
    • Heat and cold: I learned about this years ago from a physical therapist, and have seen it repeated often. The key is to keep your extremities warm, and your head cold. I often get under the covers and then apply an ice pack alternating to the back of my neck and the point of pain. Another option is to take a hot bath or shower, and then apply the ice pack.
    • Magnesium: I have added chelated magnesium to my daily supplements, but will also take a bath with lavender and Epsom salts. The bath seems most effective for the slow, mid-grade attacks.
    • Massage: My attacks are not caused by tension, but it appears if the attack continues long enough I will get muscle tightness in the neck and shoulders. Often a massage can break the attack. There is also a lot of research regarding the vegus nerve and trigeminal nerve on the side of the head. I’ve found that massaging those nerve routes will often improve if not abort the attack. There is also “Self Release Techniques” by Kenneth Lamm, P.T. I learned this in physical therapy. Apparently the scull bone is make of different plates, not one solid bone, and by manipulating these plates, it increases the circulation of cerebrospinal fluids, and that can help manage the attacks. That would also explain why a massaging shampoo at the first signs of a headache often helps.
    • Acupuncture/Acupressure: I’ve been seeing a Chinese MD for over a year. She is treating me not only for migraine, but also for the Central Nerve Syndrome that I developed as a residual effect of my thalmic lacunar strokes. This is ongoing, but those little needles do abort an attack. The downside is that my migraines don’t schedule their visits and I can’t always get to the doctor when an attack hits.
    • Daith piercing?? OK, so this is what I’m currently researching, but haven’t tried–yet. My doctors all shake their heads and shrug their shoulders when I ask about it. There have been no scientific studies that I’ve found, but the anecdotal results on the Internet seem compelling. I would love to talk with someone who’s had the piercing for more than a year to see if they experienced a solid long-term improvement due to the piercing.

I hope some of this information helps you. There is exciting research being done in all areas of migraine research. Wishing you pain-free and healthy days ahead.

Advertisements

Please leave a comment.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s