Finding Light in the Dark of Chronic Illness

It has been only four months since my last post, but in some ways it feels I’ve lived half a lifetime since then. Winter, or what passes for winter in mild southern California, has fully given way to spring. The finches at our backyard feeder are in full breeding pluming with vibrant red breasts and their mating songs are a welcome addition to the mostly mechanical sounds of the neighborhood. Mourning cloak and monarch butterflies are so abundant that one could (and sometimes I do) spend an entire afternoon watching them dance in the gentle breeze, occasionally landing on a milkweed leaf or a palm frond or even finding a partner or two to pirouette with.

As for me, I have been working very hard to steer my own winter towards spring. Unfortunately, my migraines have progressed from chronic migraine (15 or more migraine attacks a month) to chronic daily migraine. In essence, I no longer go through the four phases of a migraine attack, and  I have symptoms of a migraine at all times, including but not limited to: light and sound sensitivity, head pain, fatigue, body aches, nausea, chills, neck pain, irritability, alloydnia (skin painful to the touch), vertigo, and tinnitus. Some days or parts of days are better than others, but I haven’t had  completely migraine free days yet. I include my individual symptoms not in an attempt to garner sympathy, but as a gentle reminder to any of my readers lucky enough not to experience migraines themselves that they are so much more than just a headache!

Anticonvonsulants for Migraine Prevention and Their Pesky Side Effects

Because of my worsening migraines, I decided to drop out of the clinical trial that I was enrolled in so that I could fully focus on getting my migraines under control and take the preventative medications that conflicted with the trial. Unfortunately, the headache specialist at UCLA Neurology Clinic whom I trusted and had been working with for the past 18 months took another job and left the hospital right around the same time that my health got worse. She prescribed me a large dose of Depakote, an anticonvulsant that is used to treat both migraines and central nervous system sensitivity and is one of the few I had not previously tried, before she left. She warned me about hair loss and weight gain, but luckily I did not experience either.

I did, however, experience some pretty severe brain fog and tremors when I was later prescribed a second anticonvulsant, Topiramate (or Topamax), by my new headache doctor. Almost every chronic migraine sufferer is familiar with Topamax, as it is one of the most effective and commonly prescribed migraine preventative medications. The brain fog associated with it, however, can be so horrible that it is un-lovingly referred to in the migraine community as Dopomax. The side effects of the two anti-seizure meds on top of the daily migraines added up to an utterly miserable mess of me.

In the garden. Photo by me
In the garden

Propofol and Occipital Nerve Blocks for Refractory Migraine

By the time I met with my new neurologist I had been in bed for three months, had lost ten pounds, and was ready to try more aggressive treatment. She rcommended we try an outpatient procedure during which I would be anesthetized with propofol. While knocked out I would also receive  nerve blocks to treat the damaged occipital nerves that begin at the base of the skull, wrap around the head and end at the eyes and may be causing some of my pain.

Studies have shown that propofol infusions can help some patients with migraines that do not respond to treatment, but I, sadly, was not one of those patients. The staff at the surgery center was so wonderfully kind to me, and my insomnia leading up to the procedure was so terrible that I think it was worth it just for the experience of a deep drug-induced sleep. Although, I could have done without the bill.

“Your struggle is your strength. If you can resist becoming negative, bitter or hopeless, in time, your struggles will give you everything.”

-Bryant McGill

DHE Injections

Our next try was an injection of DHE, a drug commonly used to abort migraines. Administered via injection or IV in a doctor’s office it has a high success rate at stopping ongoing migraines, particularly in people with episodic migraines. It was not my silver bullet, to neither mine nor my doctor’s surprise. At that point my migraine had been daily for five months, and I no longer expected to wake up in the morning without a migraine.

The real MVP in the DHE trial was my beautiful little sister who took me to the appointment and managed to comfort me with one hand while I car vomited and change lanes with the other on the 405 freeway at 70 miles per hour. Without her strength and empathy the miserable experience would have been much more miserable.

Cognitive Behavioral Therapy & Looking Forward

I am primarily housebound, as there are not too many places one can go when one’s symptoms are exacerbated by light, sound, and movement. I am working with a Cognitive Behavioral Therapist who deals exclusively with the elderly or the ill and we are constantly looking for new ways to adapt my skin and mind to my surroundings, so I can experience as much life as possible even with a migraine. Steadily and slowly I’m learning mindfulness, gratitude, gentleness, and pacing. It is a physically and emotionally trying journey and I sometimes leave her office overwhelmed with even more tips and suggestions of things I “should” be doing. Even so, I am working very hard and I have already seen quite a bit of progress on this road I am traveling that will hopefully lead me  to remission or acceptance. But that is for another post.

Monarch pupae awaiting change
Monarch pupae awaiting change

I am slowly titrating off of the anticonvulsants that did not bring me relief under the guidance of my doctor and am so grateful to bid adieu to the tremors and the worse of the brain fog. I have implemented dozens of small lifestyle and supplement changes, which I plan to write more about in my upcoming posts if my head allows.  Until then, I am focused on listening to my body, practicing healthy habits, educating myself as much as possible about my disease, and trying to suck as much joy as possible out of this beautiful and only life I have been given.

A Fresh Start

Just before sunset I put on my neglected running shoes and went for a walk. As the sun set over the wetlands, my mom and I watched the dabbling ducks dive for the last meal of the day. We watched the ibises and the egrets fly home in groups of threes and fours. We watched the colors change in the sky and on the water, and we just walked.

After more than two months in bed with pain so big  standing up made it worse, walking in the cold fresh air felt like a baptism. It is hard to feel full of life when you are stuck in bed, day in and day out. It is hard to feel full of life when every movement, sound, and light hurts. It is hard to feel full of life when your whole world feels as big as as your bed on a good day and as big as your body on a bad day. Just being outside, feeling my muscles and joints reawaken, I felt like I had been given a completely different body.

Recording the end of my migraine, maxed out at 999.99 hours

Even better, I felt like I had been given hope. The chronic illness journey involves constantly toeing the line between hope and fear. Naturally, any time my health gets worse or I experience a prolonged migraine attack my thoughts turn more easily to fear. Fear of getting worse or never getting better, fear of side effects and complications, fear of judgement and abandonment. These are the days when hope is at its most powerful but is the most difficult to draw upon.

As I move further along on my chronic pain journey I am getting better at  finding joy and hope during periods of illness. I expect this to be a continuous challenge filled with ups and downs befitting the cyclical nature of grief and gratitude. When the pain subsides, though, the joy is overwhelming.  All of a sudden the hope and gratitude that I have struggled to hold onto come easily. Watching the sun set and the birds dance I am reminded that my place in the world is so much more important than my illness. I am reminded that I am so much more important than my illness.

Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting
over and over announcing your place
in the family of things.                                                                                                                                     – Mary Oliver

When the Pain Won’t Stop

You know how in certain nightmares  you find yourself suddenly unable to move or react to a terrible situation? Something is chasing you or you are falling, and you are powerless to move your arms or legs. You fight and fight to move long after you know it is useless. The realization that you are powerless is terrifying, and you remember that terror long after the details of the dream fade from memory.

Severe pain is a lot like that nightmare. Disability is a lot like that nightmare. I hate the word disability, maybe because I have yet to make my peace with it. Disability is the only word, however, that does justice to the long weeks I’ve spent in bed with an intractable migraine (10 and counting). This period of severe pain and disability is a whole different beast than any physical or emotional situation I have encountered. This beast gets its power in its relentlessness. Every minute of every day I am in pain, almost always pain that is severe. It gnaws on me every minute of every day and tests every coping skill I’ve learned from years as a migraine sufferer.

“Illness is the doctor to whom we pay most heed; to kindness, to knowledge, we make promise only; pain we obey.”

– Marcel Proust

Everyday I wake up sick and in pain, and everyday I fight it. Like the mysterious enemy in those nightmares it traps me in my body and pins me to my bed. The realization that I am physically powerless hits me everyday with the same visceral terror felt in those nightmares. I fight it every day, though. I fight like hell to feel better every day, even if it often only highlights my powerlessness. Like in the nightmare, I can’t help but to fight and fight and fight. On the outside the fight doesn’t look like much: a smile, a shower, a few minutes spent out of bed with the people I love. Most of the time the fight is completely invisible to those around me just like the pain.

fightpain

Pain changes your brain. It changes your mood,  your perspective,  and your thought process. It demands to be felt and it demands to be catered to. Migraines bring a host of cognitive effects that change your brain even further. They slow down your thoughts and make it difficult to pay attention to conversations or tasks. They cause brain fog that makes you forget your PIN number and the second half of sentences. I have been waiting for my pain to subside long enough to write, and now that it has it seems dishonest and maybe even impossible to write about anything other than this pain.

I started this blog around the same time I enrolled in a clinical trial for chronic migraines. I had high hopes that the trial would at least get my migraines under control and this blog would be about life with migraines,  rather than migraines with a little bit of life on the side. Life and my brain had  very different plans for me, apparently. Despite it all I don’t doubt that I am strong enough to make it through this period of crisis, especially with all of the love I receive from my family, my partner, and my friends. This migraine may be intractable but so am I.

“You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.”

-Maya Angelou

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.

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

The Healing Power of Self-Compassion

On Monday morning, I experienced the simple bliss of waking up without a headache. Over a year ago, my neurologist told me that waking up every morning with a headache is a sign that I am over-using medication (triptans and Ibuprofen in my case) causing rebound headaches. Though I rarely treat my headaches and migraines with any medication that can cause rebound, my head is still wracked with pain most mornings before I even open my eyes.

Monday morning was different, though. I woke up pain-free and ecstatic to spend the day with my boyfriend who is visiting me after a long summer apart. We enjoyed coffee and breakfast together, and the pleasure of spending a pain free morning with the person I love the most made me giddy with gratitude and relief.

These moments of respite from pain are bittersweet and always too short-lived. Shortly after breakfast, I was hit with extreme fatigue. Nausea, light sensitivity, and eventually throbbing pain soon followed until I was fully immersed in a migraine. I went from a happy young woman ready for a beautiful day to an exhausted, brain-dead dark-dweller. In my pain and disappointment, I cried and raged and internally bashed my body for being useless for little more than misery or pain. Even after two years of chronic migraines, every single migraine feels like a betrayal.

My body deserves my compassion, not my rage.

I know this but have to remind myself of it daily. I expect a level of compassion from my family, friends, partner, and doctors that I have trouble giving myself. When a migraine sets in my emotional strength is drained, and my mind wanders easily to negative, self-critical thinking patterns. There is nothing unhealthy about complaining externally or internally when you’re in pain, but when you’re in pain for so much of your life those thinking patterns can take over and lead to isolation and a further diminished quality of life.

Continue reading The Healing Power of Self-Compassion

Finding Fulfillment Despite Pain

I’m sitting at the base of a Jeffrey pine tree on the north shore of Big Bear Lake watching the light change. Nuthatches, phoebes, northern flickers, and bluebirds flit around the tops of surrounding trees catching as many insects as they can before nightfall. There must be close to a hundred birds in my line of sight – more than I’ve ever seen in such a small space.

After spending more than three weeks in bed with nonstop migraines, the quiet peacefulness of this moment is overwhelming. My brain is still foggy and slow, and I’m still queasy enough to make eating hard. But the sun on my legs and the energy of the birds nourish me more than any amount of rest or medication. For the first time in almost a month, I feel like myself rather than a migraine with the shadow of a person attached. Moments like these are what keep me going.

Chronic illness is a thankless and demanding partner that forces the sufferer to make sacrifice after sacrifice.

It is completely normal for those of us with chronic illness to wrestle with feelings of inadequacy and a diminished self-worth. I have no career or children or social life to offer fulfillment, so I must seek it elsewhere. Every day I put effort into appreciating the small and beautiful moments, but sometimes it just isn’t enough.  Continue reading Finding Fulfillment Despite Pain

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