If you’ve recently been diagnosed with migraine disease you’re probably wondering what few things you should focus on while you’re starting to sift through volumes of information about coping with and preventing migraines and other headaches. Keep reading for my five essential steps.
1. Get a recommendation for an excellent headache specialist.
When you’re new to the process of getting treatment for your migraines you might make the mistake of thinking any neurologist can help you. Unfortunately, this is simply not the case. Some are woefully uninformed about treating migraines, while others don’t want to treat headache patients but don’t have the guts to tell you that. The worst offenders encompass both traits.
The good news is that there are wonderful specialists spread all across the U.S. who are both brilliant and compassionate. It just takes a little research to find the right ones.
Here is a link to a list of patient recommended specialists compiled by migraine advocate Teri Robert: Patient Recommended Migraine & Headache Specialists.
I also suggest spending some time on one of these migraine forums to get other recommendations for good specialists:
My Migraine Connection Forums
Migraines Live Journal Community
Daily Migraine Live Journal Community
Chronic Babe: Migraineurs
2. Build a support system.
Your friends and family probably won’t understand the true nature of migraines (i.e. that migraine is a neurological disease, not just a bad headache) and will not know the full impact of the disease on your life. You must do your best to share what you learn about your condition with them and tell them what they can do to help you. Be as specific as you can so there is less room for misunderstanding.
Becoming part of the online community of migraine patients is a wonderful way to feel less isolated. Other migraineurs have had similar experiences and can easily relate to what you’re going through. You can connect on the aforementioned message boards, blogs, Facebook and Twitter. If you go to my Facebook fan page you’ll find that I’ve linked to many pages of other migraine blogs and communities. I also follow many other migraineurs on Twitter and have all of them in a list called migraines. Finally, check out my links page for a list of migraine blogs and communities.
I don’t say this to insinuate you’re unstable or that mental illness is the cause of your migraines, but I also recommend you find a good therapist. Speaking from my experience, the longer your life is impacted by migraines, the more you need the skills of a professional at your disposal to help you cope with all the upheaval in your life.
3. Familiarize yourself with the AHS Headache Hygiene guidelines.
The American Headache Society (AHS) Headache Hygiene guidelines are a list of seven important good practices for migraineurs. They’re all grounded in common sense and provide a good place to start making simple lifestyle changes.
AHS on ‘Headache Hygiene’
4. Find or continue to focus on a relaxing, enjoyable hobby.
Preferably your hobby would be something low key that you can do just about any time, but the important thing is to make a commitment to yourself to keep doing some of the things that make you, well, you.
For me, it has been blogging, reading and knitting. I can’t usually do any of these when I’m feeling incredibly awful, but on an average day I can engage in these activities and feel a bit more like myself. I know knitting is stressful for some people, but I find it very calming. It is important that I focus on proper posture so I don’t make my pain worse, but nothing beats the satisfaction of making a real finished object.
5. Explore mindfulness and relaxation.
One of the best ways to cope with pain is by developing meditation and relaxation skills. Contrary to popular belief these are not religiously-based techniques that might interfere with your own belief system. Meditation is simply a way of calming the mind and being present in this moment rather than focusing on the past or the future. This is important because when you are experiencing the often excruciating pain of a migraine attack it is natural for your mind to wonder if the pain will ever go away and whether you’ll be able to take it if it doesn’t. This is not helpful and increases your suffering. We may have to live with pain, but suffering is optional.
As an additional ongoing step these are some books I highly recommend you read as you’re able to do so:
Living Well with Migraine Disease and Headaches: What Your Doctor Doesn’t Tell You…That You Need to Know by Teri Robert
All In My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache by Paula Kamen
Know Your Rights: A Handbook for Patients with Chronic Illness by Jennifer Jaff
The Body Broken by Lynne Greenberg
Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness by Jon Kabat-Zinn
Break Through Pain: A Step-by-Step Mindfulness Meditation Program for Transforming Chronic and Acute Pain by Shinzen Young
Comfortable with Uncertainty: 108 Teachings on Cultivating Fearlessness and Compassion by Pema Chodron
How to be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard
Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties by Laurie Edwards
You Bet Your Life! The 10 Mistakes Every Patient Makes: How to Fix Them to Get the Healthcare You Deserve by Trisha Torrey
Do you have other important tips to share? Are you a recently diagnosed patient with questions? Please post them in the comments.
This post is my September entry in the Health Activist Blog Carnival. If you’re interested in participating you can read all about here: http://blog.wegohealth.com/2010/09/new-health-activist-blog-carnival-back.htm.
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DISCLAIMER: Nothing on this site constitutes medical or legal advice. I am a patient who is engaged and educated and enjoys sharing my experiences and news about migraines, pain, and depression. Please consult your own health care providers for advice on your unique situation.