By Jeanette Rotondi
My journey with chronic migraine began in 2007 just before my 30th birthday. I had completed my Masters in Social Work, with honors, while working in a community outpatient mental health program and had passed all my licensing exams. I had started working in another outpatient program and was clocking hours toward my clinical licensure. Married in 2003 to the love of my life and very supportive husband, we were discussing starting a family. Life was good and flourishing: new careers, first home, and planning a family.
Then, life changed when my health suddenly took a turn. I had previous experience with health issues and invisible illness in the past, a journey through mental health, and combatting anorexia and bulimia, but was in recovery. This was all new, beginning with experiencing pain on the left side of my head, neck, face, and jaw as well as stroke- and seizure-like activity and spasms. I was misdiagnosed with a partial seizure disorder and then cervical dystonia, to explain the neurological and stroke-like symptoms such as aphasia, paresthesia, unresponsiveness, and facial weakness. I continued to have these symptoms, as well as light and sound sensitivity, nausea, vomiting and debilitating pain. Finally, I was referred to a neurologist who was also a headache specialist.
I was diagnosed with chronic migraine disease—a condition in which the patient must suffer 15 or more attacks a month—as well as cervicogenic headaches. Cervicogenic headaches differ from migraine in location, symptoms, and intensity; these headaches were arising from issues in my cervical spine. Through further testing I was found to have nerve damage due to spinal stenosis, facet joint arthritis and disc degeneration, as well as TMJ. A nine-year treatment journey for chronic migraine began, with referrals to both a pain management specialist and TMJ specialist. Treatment consisted of trials with preventative and abortive medications for chronic migraine, as well as facet joint blocks, epidurals, and nerve ablations for the spine.
In 2011, I was finally approved for a spinal fusion. Unfortunately, by then, the nerve damage was permanent. Gradually, the joint and spinal issues progressed to impact the lumbar spine and other joints throughout my body, leading to more extensive treatment and three more surgeries: two shoulder in addition to a lumbar discectomy. Again, surgery was performed too late to reverse the nerve damage, which continues today. I have many days of horrible back and leg pain, and recently underwent a trial for an implanted spinal cord stimulator.
During this time, one of my childhood disorders, called colonic inertia (a type of colon dysmotility), had progressed and my previous treatment approach was no longer effective. I had a rectal prolapse and underwent a search for new treatment, eventually undergoing a partial colectomy. A month later my father died suddenly, one of my greatest supports and source of strength.
I persevered, searching for effective treatment to reduce the severity and frequency of the migraine attacks that still occurred at least 15 days a month. I had tried many medications, none of which offered any relief. The symptoms and pain were immobilizing to the point that I was disengaged from life, restricted to dark and quiet rooms. During this time, I lost friends and my career, and withdrew from family. Plans to start a family were put on hold for eight years while I sought better treatment. At times, feelings of grief, loss, guilt, and frustration became overwhelming, along with invasive thoughts of escaping the physical pain. Fortunately, due to coping skills developed in treatment many years earlier, faith in God, the support of my mother and husband, and professional training, these thoughts were not acted upon. Sadly, this is not the case for many sufferers, who do attempt and sometimes succeed in committing suicide.
Treatment continued in efforts to find my best quality of life and level of functioning and I developed a new normal with the acceptance that there was no cure. I strived to live, not just exist, with chronic pain. In 2013, I stumbled across a non-profit organization called the U.S. Pain Foundation, created by people living in pain for people living in pain with the goal of empowering, educating, and advocating for those within the pain community. I became an ambassador with the hopes of finding a place to help others with chronic pain. The ambassador experience has been fulfilling and has served to educate and empower my own journey. During June’s Migraine Awareness Month 2015, I began volunteering with another non-profit called Chronic Migraine Awareness, Inc. Their mission is to support and encourage those with chronic migraine while educating society in an effort to reverse the stigma attached to migraine as a disease. Volunteering with them has been another gift.
After all other means of treatment were exhausted, I was finally approved to try Botox as a treatment for chronic migraine. Botox does not work for everyone, but in combination with occipital nerve blocks, it has helped me improve. The abortive medication works more efficiently, symptom severity and pain have decreased during attacks, and the frequency of attacks have decreased somewhat. This is was a huge triumph for me. Today, I still have severe attacks that leave me unable to function at all, but they are no longer 15 or more times per month.
My husband and I began to revisit thoughts of including a child in our family. None of my doctors or maternal fetal medicine specialists supported my plans for pregnancy. I will never forget the day I received the specialist’s report with the recommendation and reasons why I was not physically a good candidate to carry a baby, noting medications, having to stop treatment, past surgeries, stress on the spine, and more. As I began seeking a second opinion, I discovered I was pregnant. Thankfully, I had a respite from my chronic migraines during pregnancy due to hormonal changes. It was a difficult and emotional journey. I was taken off all medications and treatments, but one medication had unexpected and debilitating withdrawal symptoms. I struggled with the impact on my spine and increasing pain levels. I struggled with the emotional impact as well, wanting to share the joy and anticipation of my baby, while at the same time battling pain and withdrawal. I tried to hide the struggle even from my doctor, but hiding these difficulties was utterly exhausting. I feared that people would not understand that although I was struggling with increasing pain and trying to cope, I was also very grateful. I was joyful with anticipation and in love with my baby already. I also feared judgement that I would fail my baby as a mother—fears that I still battle today. My son was delivered naturally on April 20th, my own birthday.
Now I liken life with chronic pain to natural child birth: going through horrible pain to see the great joy of life. Every day, I acknowledge the pain and fight to see life’s joy. Some days it is harder than others. Chronic pain is a journey that includes a daily fight with a bully that throws punches physically and emotionally. I continue to struggle to maintain a critical level of acceptance. I still struggle with the pain itself, and face the frustration that to have a level of functioning requires painful treatments. I am fighting to rebuild trust in people for the sake of my son. I shut people out, not wanting to cause burden, and fearing misunderstanding when their expectations were not met. I struggle with a sense of loss at my own expectations for my life and what I had expected to achieve. I was taught there is no “I can’t” and lived by that throughout all my health battles. While I do struggle with pacing and accepting physical limits, my head says “just do it.” There is always a recovery phase that occurs when limits have been pushed, after exhausting treatments, or after a migraine attack or high pain day. Often during a severe migraine attack, life completely stops for me. This recovery and exhaustion is not often discussed. At this time, I only have two people I trust to ask for help: my mother and husband. They let me do what I can and are there to support; they understand that grief over life with pain does not negate joy and gratitude. I truly trust them to see me at my worst without judgement.
I have made strides on my journey through the stages of grief that accompany chronic pain. I have sought to accept my new normal, living life with ever-present pain. I have developed practical strategies for functioning with chronic pain in order to care for myself and son. Chronic pain has taught me so many lessons. It has taught me to find joy in the simple things and fight to see that joy even when pain is pervasive. It has taught me to be more creative and strategic to overcome obstacles. It has strengthened my own level of compassion for others. Ultimately, it has helped me stop rushing through life’s precious moments.