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Baby’s First Migraine Attacks, Diagnosis, & Migraine Genetics

A flash of nostalgia came over me as I picked up the yellow towel on the couch and hung it up. I remembered my nephew flinging it aside last night the moment he got out of the bath, his long hair dripping on his small, cold shoulders. I saw the same image two nights ago when we planted in his garden after his bath. He seems impervious to the cold and intent on getting dirty, too excited to put on a shirt before grabbing his small yellow hoe. We had meant to plant during the afternoon of course, but my sister, his mom, is a self proclaimed hater of the wind and the palm trees in Southern California have been extra vocal this week.

The author and her sister as wee children

My head throbs now when I hold the yellow towel just as it did when I watched his dear shoulders guide the yellow hoe through a path in his garden. I don’t notice too much. It isn’t too bright or loud, and every day I am learning to be calmer and gentler with myself.

I am trying to be patient with my body, giving it the time and space it needs to heal, and making an effort to enjoy every moment spent with my family.

My shoulders were even smaller than my six-year-old-nephew’s are now when I experienced my first migraine attack. I was three years old and just recovering from a nasty bout with the chicken pox when I experienced excruciating nausea and head pain. To this day I remember not wanting to watch Beauty and the Beast because the television hurt my eyes and how that fact scared me. At that period in my life, like so many budding bookworms in the early 90s, it was a serious emergency if I was too sick to watch Belle tell off Gaston.

I Now Pronounce You Diagnosed

Once I vomited (my greatest fear at that young time) the pain subsided a bit and I was able to sleep, but the attacks were not over. I experienced two more in the following weeks which meant a trip to Dr. Dias, my favorite pediatrician, a gentle Indian man with soft hands and incredibly blue eyes.

The author with her sister at age three and a half - the age migraines began
The author with her sister at age three and a half – the age migraines began

I have heard my mother tell the story of my toddler migraine attacks to a several neurologists and doctors over the years, and she always includes the exchange:

Mom: Please don’t tell me she has migraines.

Dr. Dias: I’ll tell you these aren’t migraines, but they are migraines.

I now pronounce you diagnosed.

I don’t remember much about being three but most of it revolved around the back yard and my little sister and playing in the sprinklers. It’s easy as an adult to conjure up feelings of goodwill, love, and empathy alongside an image your toddler self. When you picture your young self ill or frightened  the desire to comfort is strong and natural. But as we get older, thanks to society or nature or both, that desire fades and sacrificing our health for success, money, convenience, the happiness of others, fill-in-the-blank, is the norm. Whether you’re stuck inside with a chronic illness 23 hours a day or just doing what you need to do to make your day a little easier, each of us could benefit from looking in on that young self every once in a while.

[bctt tweet=”Thinking back to simpler sick days is a helpful reminder to take care of myself with love and empathy.” username=”CMLifeblog”]

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Rule Your Headache Disorder

Happy Migraine and Headache Awareness Month 2016!
This is my first year participating in this campaign and I am thrilled that the theme chosen for this year’s awareness month focuses on living well with migraines rather than solely awareness aimed at the general public. This year’s theme is Rule Your Headache Disorder with a special message to be actively engaged in your treatment and lifestyle choices. Like many migrainuers, I know from experience that ignoring my headache disorder, letting my doctor call the shots, or slacking off with lifestyle modifications can very quickly lead to a situation where I feel out of control. Alternatively, learning about migraines, keeping communication open with my doctor, and continuing my commitment to lifestyle modifications puts me in a position to best rule my headache disorder.

Combat Pain with Creativity

One of my coloring creations
One of my coloring creations

Active engagement in our treatment plan extends far beyond the doctor’s office, just as the tentacles of migraines disease reach far beyond our own bodies. Each and every migrainuer is different and experiences migraines differently, but diet, sleep, exercise, and, my favorite, stress management are all important pieces of the management puzzle. Keeping stress at a minimum is crucial both between and during migraine attacks, but it is difficult to say the least, especially when you are dealing with severe pain and nausea.

One of the best and most fun ways to combat pain and relieve stress is through the creative process.  Coloring, cooking, walking, reading, writing, painting, photographing, birding, listening to music… Any tasks that involves focus and imagination quiets down the part of the brain that controls stress, the amygdala, and causes a stress-relieving response throughout the entire body.

“Fostering imagination as an adult is one of the most meaningful things to do for your mental health,especially if you are dealing with the high levels of stress that comes with chronic pain. Illnesses changes lives, abilities, and perspectives, and creative activities help tap into a deeper part of ourselves. It is precisely the creative and playful part of ourselves that we need to connect most to in order to process the experience of pain and best cope with it.”

To read more about combating pain with creativity, please check out my recent article for the Peace Naturals Project.

A special thank you goes out to Teri Robert for her work with Healthcentral for Migraine and Headache Awareness Month. Be sure to wear purple all month to show your support and keep your eyes open for headache and migraine hashtags on social media.

 

My Experience with the CGRP Migraine Vaccine

After two years, two migraine specialists, three rounds of Botox, seven trigger point injections, four eastern medicine practitioners, dozens of lifestyle changes, and too many medications to count, my neurologist told me I was out of options. Despite our best efforts my chronic migraines refused to be managed. The silver lining, according to my doctor, is that I am young enough to see new developments for migraine treatment within my lifetime – the most promising of which is a migraine antibody currently in development.

Within weeks of receiving this devastating news, I had tracked down a clinical drug trial in my area for the vaccine, and after a ton of research signed myself up. The phase II trial is sponsored by Alder Pharmaceuticals to test the experimental antibody called ALD403. ALD403 is a genetically engineered antibody that targets a small protein called Calcitonin gene-related peptide (CGRP) that is thought to play a crucial role in migraines. Several companies are developing similar CGRP antibodies with the hope that this technology will be nothing short of revolutionary in migraine prevention.

Getting the infusion!
Getting the infusion!

The initial phase I trial for ALD403 found that 60% of patients who received the antibody had a 50% reduction in migraine days, and 32% saw a 75% reduction (compared to the placebo groups at 33% and 9%, respectively). Sixteen percent of patients who received the treatment had absolutely no migraines in the three month period after the dose of ALD403, compared to 0% with the placebo. Even better, there were no significant  adverse side effects reported with the antibody.

Unfortunately, my experience with the ALD403 phase II trial was not as positive as I had hoped. As I write, it has been 11 days since I received an intravenous infusion, and I have had a migraine every single one of those days. Those who have seen improvement with the antibody have seen it almost immediately, so it is safe to assume that this drug trial was not successful in reducing my migraines. However, that does not necessarily mean that I can write off the CGRP antibody, even personally.

The infusion appointment took 7.5 hours. It involved two EKGs, a urine test, multiple blood draws, and cake!

Since the trial is double blind, I will not know until it is over in one year whether I received a dose of the antibody or a placebo. There is a 20% that the infusion I received contained nothing more than sugar water. It is also possible that I received the antibody, but in a dose too small to be effective. One of the goals of this trial is to determine the lowest effective dose, so the trial includes four different doses:  10 mg, 30 mg, 100 mg, and 300 mg. Compare those doses to the 1000 mg dose in the initial trial – that is more than three times the highest dose I could have received!

I am incredibly disappointed that I did not get relief from the infusion. With every failed attempt at managing my migraines, the hope that I will get better dwindles just a little bit more. I am no stranger to failed treatments, and I know that after every failure I need to let myself grieve a little before going back to the drawing board. I still have a lot of hope for the CGRP antibody, and I am keeping it on my radar as I continue my search for an effective treatment.

If you are interested in signing up for a clinical trial:

To learn more about the promising CGRP antibody:

How Can I Get Disability for Chronic Migraines? Tips for Approval

A few mornings ago, I was sipping coffee and taking care of bills online when I noticed a large sum deposited into my checking account. My foggy brain dismissed it as a banking mistake and I went on with my day. Hours later it hit me that the deposit had the abbreviation “Soc Sec” next to it .  I had been approved for disability and was awarded back pay!

Can I get disability for chronic migraines?

I applied for Social Security Disability Insurance (SSDI) four months ago and was not optimistic.  I was not expecting to get news so quickly, and I was really not expecting to be approved. The lady from my local Social Security office told me that it would take at least 6 months for me to get an initial answer. The horror stories I came across online  told me that the initial answer would most likely be a refusal. Only 30-35% of applicants are approved on the first try, and the appeals process can take years.

Getting disability for my condition, chronic migraines, is tough. Every migraine sufferer knows all too well how disabling migraines can be. On top of the severe head pain, migraines bring a lot of fun symptoms like nausea, vomiting, light sensitivity, sound sensitivity, vertigo, cognitive impairment, and many, many more.  Even so, the Social Security Administration does not include chronic migraines on the list of conditions automatically awarded benefits.

Why, then, was I approved so quickly?

I’m sure luck had something to do it, but I also did my research and worked hard to ensure that my application included everything the Disability Determination Office requires  for an approval.

 Most people who apply for disability are eventually approved, even if they were initially rejected. The following tips helped me get approved on the first try, eliminating the need for a lawyer and a lengthy appeal process.

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