Chronic Migraine Awareness

Written by Rachel Huley

Presented by Chronic Migraine Awareness

The difficulty of finding a doctor for an invisible illness is hard enough every day of the year when hospitals aren’t flooded with contagion and warranted mass hysteria. During a world-wide health pandemic, finding a new, trustworthy doctor would be a miracle.  I called the neurologist’s office where I am less-than satisfied and left a message after the beep. The sound of the beep itself was a shot to the temple. I make a mental note to be angry at whoever invented the beep. I’ve called that practice three times since with three more messages and no such luck. The incomparable Dr. Henry’s practice is in Utah, and while I’ve traveled back to see him on more than one occasion, it wasn’t looking like an option this time. Airlines were not filling middle seats to enforce physical distance on flights, the prices have gone up significantly from what I usually pay to travel home. Plus, my boyfriend and I, who are lucky to still be employed, have taken pay cuts at work and can’t afford the price tag of a plane ticket on top of the cost of treatment.

In between Botox injections in Atlanta, I’ve gone home to have Dr. Henry turn my nerves off. The nerve block shots used to frighten me– the syringes are menacing and the pain of the injection sites can sometimes take the air right out of my lungs. The first time I got nerve blocks was in 2013 on the day of my senior prom. I had spent the previous night in the emergency room with a migraine that shut down half of my body. I couldn’t communicate with my mom the kind of pain that I was in– I could barely move at all. Just dizzied groaning, drooling, and yelling. From the story she tells, it was probably 11:00PM when we got to the hospital. 12:30AM when they gave me the Phenergan IV that caused me to seize and almost break the CT scan machine (sorry, St. Marks) it was 3:00AM when we got home. I saw Dr. Henry the next day for the administration of nerve block injections in the occipital and trigeminal nerves. Turns out ice packs are a great accessory with any prom dress. Since then, I’ve probably gotten the nerve blocks once if not twice a year, usually increasing the injection trigger points each time. The most recent addition was one or two blocks ago and right above my eyes. When doctors and nurses say that tension will cause more pain with shots and injections, they are talking about getting shots over your eyes when you’re squeezing them closed.

During this last (and current) migraine episode, nerve blocks could have saved me from what has now been 5 weeks of migraine.  Just it and me, and an incredibly understanding partner who had to change his eating habits considerably to reduce my nausea. And a cat who knows something is wrong because he has been uncharacteristically kind.  I’ve had days with pain at a more tolerant level, like today, where I am able to cut through a bit of the brain fog, get some work done. Some days I even let my boyfriend even put onions in his burrito. I can still feel the same migraine who rocked me back and forth in fetal position and blurred my vision weeks ago looking at me now, grinning. My migraine is just casually waiting here for anything to pull the trigger so that it can say it never left. And for me, sitting not knowing when it will be worse again, or how it will manifest, or how long it will be at 9/10 on the pain scale brings me enough anxiety to start a brand new attack. I like to think I’m at the end of this one. I would knock on wood if the sound didn’t bother me and the pain wouldn’t reside in my knuckles for ten minutes past knocking. 

You could say I’m losing nerve. Being in constant pain can do that to a person. I couldn’t find anyone in the greater Atlanta area to do nerve blocks on a new patient. I couldn’t get my neurologist to call me back. I did a telemedicine call with Dr. Henry, who was able to prescribe me a new class of migraine rescue medication. Why don’t doctors offices around here answer their phones? I don’t know how many more voicemail beeps I can listen to. I resent that I’m angry with the doctors and practices that can’t help me right now, because they couldn’t necessarily help me earlier either. The imbalance of headache patients to headache specialists is not new in our current crisis. The new part is being afraid to seek care in a time where care is a heroic act.

Doctors, nurses, first responders are working overtime during the COVID-19 crisis. They have become martyrs to a pandemic that feeds on the poor and makes ivory floor-boards from their worn ‘essential-working’ bones. 

I’m not dying from my chronic migraine, fibromyalgia, or lyme disease. While I’m at it, I’ll throw in that I’m not dying from my major depressive disorder, generalized anxiety, diplopia, trigeminal neuralgia, or cervical syndrome, or anything else on my chart. But I can say with all certainty that I am in no way living. Cancer patients get immediate care because death is the alternative, and the only way to keep up with something as rapidly evolving as cancer is to treat and care as rapidly as cancer moves.  When a person has chronic pain, like chronic migraine or fibromyalgia, the pain often isn’t evolving. In my experience, there’s no underlying cause for doctors to catch and pat themselves on the back about. There are symptoms that can be treated, but chronic pain often cannot be cured. 

I do not fear the needles that prod my face and I’m not afraid of never being cured. I’m coming to terms with the fact that my reality is my disease, or lack of. As much as I want someone to drill into my head to find and remove the parasite at the root of my pain, I know nothing extraordinary causes this pain. The parasite is just an unfortunate mutation of my genetic makeup. My fears are of not finding help to get me through the days where my face tenses up with a migraine and I can’t talk. I’m scared I won’t find a trustworthy place outside of Salt Lake City to allow me to enjoy social activities when they are safe again without a purse full of rescue medication, emergency migraine glasses, a planned escape route and a quiet corner scoped out for napping. 

It is terrifying for proper preventive and abortive care to be such a cumbersome ask.  I have an incredible support team in my family and my partner. I have fair health insurance with my employer (while I don’t really think any health insurance is adequate, that is another discussion for a different day). My primary care doctor is on the board of CHAMP, the Coalition for Headache and Migraine Patients, and I still feel lost in trying to find proper treatment in a large metropolitan area. I’ve advocated for myself in every way I know how: attending RetreatMigraine, Yoga for Migraine, researching and attending Headache School through the Danielle foundation– but it still is exhausting to find a medical professional in my area who will advocate for me. Just because my disease(s) cannot be cured, does not mean that my symptoms should not be treated.