Category Archives: Chronic pain

Chronic Illness and Living Vicariously Through Books

I have had a migraine for the past THIRTY SIX days. Surprisingly, I have not yet gone insane. I have been more or less glued to my ultra cozy bed in my dark room. Trying to make myself as comfortable as possible has become my full time job. My muscles ache, my head is pounding, the room is spinning, my ears are ringing, and my stomach is churning. I feel like I have been violently struck in the head every day for the past 36 days.

Seriously, even my hair hurts. Thanks to the magic of the central nervous systems, migraines manifest themselves in a variety of bizarre symptoms like allodynia. Allodynia is the experience of pain from touch that should not be painful. When I have a migraine, the pain nerve cells in my brain and spine get over-excited. The sensory signals in my central nervous system get mixed up and cause normal touch to produce an abnormal painful result. A neurologist recently tested me for alloydnia by lightly running a paintbrush over the skin on my forehead. Just that light touch caused intense pain in my head.

Migraine sufferers who experience allodynia are more likely to find that their migraines don’t respond to triptans, which are one of the most effective families of migraine drugs. Despite years of trial and error triptans have never worked well for me. Because I haven’t found a medication that aborts my migraines, I run the risk of developing migraines that lasts for weeks. These long-lasting migraines are called status migrainosus or intractable migraines. They are pure hell.

I have kept my sanity intact through these long weeks of pain using the most powerful tool at my disposal: distraction. I binge watch every episode of Parks and Rec through half open eyes. I crochet beanie after beanie. I listen to podcasts and gentle music. I take more naps than a toddler. Nothing takes me away from my pain, however, like the emotional power of a good novel. I recently finished listening via audiobook to the final novel  in Italian novelist Elena Ferrante’s Neapolitan series, The Story of the Lost Child, and I enjoyed it so much I am ignoring my angry head to tell you about it.

Me circa 2000. Wishing I wasn't a muggle.
The author circa 2000. Wishing I wasn’t a muggle.

The Neapolitan novels follow the lives of two women, Lenu and Lila, who were born and raised in the slums of Napes in the 1950s. Through the lens of their friendship, Ferrante paints an intricate portrait of life and death that is impossible to not get swept up in. While reading the novels, my life became entwined in the loves and losses of the two girls. I ached with them and loved with them. I grieved with them and grew old with them. Thanks to the Ferrante’s skill as a writer, I peeked into the dusty corners of their lives and I saw myself.

The Story of the Lost Child (Neapolitan Novels, #4)The Story of the Lost Child by Elena Ferrante
My rating: 5 of 5 stars

I am blown away by Elena Ferrante’s skill as a writer. The Neapolitan novels are some of the most honest and moving pieces of fiction I have read in years. These novels are about many things: friendship, loss, childhood, daughters, violence, politics, writing, reading, love, feminism, mothers, sex, education, Italy. Through the experiences of two Italian women, Elena Ferrante beautifully captures the complexity of human relationships and all of the suffering and joy they bring.

View all my reviews

Truly great novels offer distraction and connection at the same time. Truly great novels soothe broken hearts and aching heads. They offer nourishment, solace, and comfort. Truly great novels simply make life more bearable. My pain is powerful but so are words. They allow me to live many lives and they help me fall in love with my own.  And for that I am grateful.

“Books are mirrors: you only see in them what you already have inside you.”
― Carlos Ruiz Zafón, The Shadow of the Wind

 

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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Mourning Myself: The Winding Path of Grief and Chronic Pain

I came across Jennifer Martin’s article, The 7 Psychological Stages of Chronic Pain, on a particularly bad day. After a couple promising streaks of good days this summer, I have fallen into a solid three weeks string of bad migraine days. I haven’t seen any of my friends, I canceled a freelance job, I canceled my vacation plans; in short, I’ve become a migraine hermit in my dark cave glued to my ice packs.

Sculpture by Megan Smythe. Photo by Angie Glaser
Sculpture by Meghan Smythe. Photo by Angie Glaser

Anyone with chronic pain knows that pain has cumulative effects on your body and soul. Day after day of pain can wears you down physically and emotionally. The emotional roller coaster that chronic pain patients experience can be just as difficult to manage and just as exhausting as the pain itself.

My personal roller coaster brings me to Stage 4: Depression and Anxiety every time I have a migraine for longer than 72 hours. A point in Jennifer Martin’s article really resonates with me, and I want to shout it from the rooftops for all of my fellow chronic pain sufferers to hear:

“It is important to understand that this depression is not a sign of mental illness.  It is the appropriate response to a loss or a life-altering situation.”

                                                              – Jennifer Martin, PsyD

Of course, there is absolutely nothing wrong with experiencing depression as a mental illness. I have struggled with it as have many others with chronic illness. BUT experiencing depression with chronic pain is a completely normal and healthy part of the grieving process. Chronic pain transforms our lives so completely and takes so much from us – careers, relationships, hobbies, vibrancy – that it is only natural that we grieve what we have lost.

Today, my grief is taking the form of tears. On most days I look to audiobooks or Netflix to distract me from my grief, but not today. Thinking positively is not going to make this migraine go away, so I am giving myself permission to cry and cry and cry. I’ve earned it.

My Chronic Migraine Story

Like most chronic pain patients, I can tell you the exact date and time that divided my life into two segments: Before Pain and After Pain.  There was no dramatic moment, no accident or violent event; I simply woke up three days after my 24th birthday with a migraine aura. The aura turned into an intractable migraine that I would spend the next two years (and counting) trying to defeat.

Before Pain

My first day in uniform. This photo was taken one week before my migraines became chronic
One week before my migraines became chronic. Photo by Eric Smith

My boyfriend Eric and I had recently moved into a tent cabin in Yosemite National Park where we would spend the summer as park rangers.

Our new home had a splintery wooden floor and canvas roof that billowed and breathed with the wind.  We had no internet, no TV, and no attached bathroom. (During extra cold nights we implemented a “pee bucket” to spare ourselves the chilly walk to the bathroom). Our bed was two paper thin mattresses that we pushed together and piled high with memory foam. It was rustic to the point of shabbiness, and I loved every inch of it.

Continue reading My Chronic Migraine Story