Full-frontal definition: Completely open and honest; candid.
Today is Chronic Migraine Awareness Day, nineteen years ago my migraine disease, turned from episodic to chronic, a stage that it still remains at today. In honor of this day I am going to give you, a full-frontal of my life with chronic migraine. Completely open and honest, holding nothing back. It won’t be pretty, but chronic migraine isn’t at all attractive.
Let’s begin at the begin again, my life with migraine disease started going very wrong, when I developed Adult Onset Asthma. I had been treating my episodic migraine very effectively with Propranolol for several years. Unfortunately beta blockers and Asthma do not mix and I had to stop the Propranolol. From that day forward I entered Chronic Migraine hell, for the last nineteen years I have not had a pain free day. I wrote about the stigma I encountered from doctors in those first few years. In a blog called, “Advocacy Beats Stigma”. Years that I felt like I was walking in total darkness, unable to find the help I desperately needed.
The first five months after going chronic were some of the most difficult I’ve ever encountered. I was in and out of the hospital, while inpatient I had consults with a Neurologist who prescribed medication, a psychiatrist who prescribed medications and my PCP who also prescribed medications. All in all, I went home on twenty-five different medications. It was a wonder that I even knew my own name. I lost my job, our best friends moved away, our oldest son moved out to live on his own. I had a total hysterectomy, was diagnosed with fibromyalgia and became extremely depressed. When I did get out of bed, I set huddled in the corner of the sofa. I began to have suicidal thoughts. I was in so much pain, physically and emotionally. I began to cut myself, it seemed that no one around me, even noticed how depressed I was. It was like I was a piece of furniture, as long as they had dinner to eat, everything was fine. This was my thoughts and feelings, not necessarily theirs. Plus my hormones were still out of whack from the hysterectomy.
When I actually made a plan to commit suicide, it scared me so badly that I called my PCP office. I spoke with the Nurse Practitioner, who I knew well, he was very kind and listened to me. He asked me if I was willing to go to the hospitals inpatient Mental Health Unit and I was. He called and set everything up, all I had to do was speak with the intake person and voluntarily admitted myself. That was the first step in the right direction, in my chronic migraine journey. I’m so very happy I took that step and am still here today. Life is precious, despite Chronic Migraine.
It took over nine years to find the right doctor for me, he is not a headache specialist, he is a Neurologist with a subspecialty, in headache medicine, and a Head Professor Of Neurology. I use a teaching hospital and have never regretted doing so. I like to think that the residents that I see on their Neurology rotation, come away learning more about chronic migraine, than they may have. Some of the residents I have followed through their Neurology Internship, to being a a full fledged Neurologist.
I knew Dr. Burger was the right doctor for me, when we started talking about preventatives and he wrote the name of three medications on a piece of paper and handed it me. Asking, “which of these three would you like to try?” YES! Not another doctor just telling me to take, this, this and this. But a doctor who was willing to work with me on my treatment plan. Now I was getting somewhere. No my migraine disease didn’t disappear over night. It’s still a work in progress, I have many, many allergies that make treating my Chronic Migraine challenging, as well as other comorbidities, such as Fibromyalgia and Degenerative Disc Disease. Along with Clinical Depression and Anxiety, Dr. Burger has never given up on me, in fact he treats my all of my comorbidities, except for the DDD.
I have times that I struggle badly, with status or intractable migraine, I’m usually in a fibromyalgia flare as well. During long cycles of migraine, I get what I call “breakthrough” depression. I retreat to my cave, needing the quiet and the dark. I don’t feel much like peopling either. Whether it’s on Facebook, Twitter or in person, I just want to be left alone. During intense pain I have had nightmares, waking myself up, crying, kicking and punching, I can tell you these are rude awakenings for my husband.
For a little over a week now, I have been in a very bad struggle. We’ve had severe, intense thunderstorms, for one period they lasted for three days straight. Then on and off again. With barometric pressure changes being my biggest trigger and the storms containing lightening. This has really knocked me out, my head pain has been very high, as has my body pain from fibromyalgia flare. The only way I’ve been able to get any relief is when I’m able to sleep. Dang it, I’m sick of sleeping my life away! I’ve been extremely nauseous, along with gastric distress, this is very debilitating for me. I get horrible stomach cramps. Eating is hit and miss, mostly miss. I have been able to tolerate Vanilla Greek Yogurt, peppermint tea and other fluids.
My nerves feel like they are on the outside of my body, so much so, that I do not want to be touched. For fear that I might fly apart in a million pieces. My mood is all over the place, sometimes I just want to sit down on the floor and cry. I feel hopeless and defeated. And wonder, how much more of this can I take? I’m so utterly exhausted, even though sleep is the only way I can escape the pain. A lot of this is depression and anxiety related, and depression talking, depression never gives pep talks, always the opposite.
Do you know what keeps me going? What won’t let me accept defeat or hopelessness? Why I won’t let Chronic Migraine win? Something that is more precious to me, than anything in the world. If a picture could paint a thousand words ~
I continue to live with hope,