By Jorie –
I’m no stranger to doctors. I’ve been in and out of the doors of many different specialists over the 15 plus years of my living with chronic migraines. I’ve had good doctors and I’ve had bad doctors. I’ve had every flavor of doctor out there… or so I thought.
Until recently, I had never had one tell me “there’s nothing I can do for you.”
Hearing that phrase felt like a punch to the gut.
I had waited for this appointment for over a month. I was so eager to see a new neurologist who might be able to throw some out-of-the-box treatments at me– something, anything I could try that might help reduce my 20-25 days per month of migraine and daily headache. I felt hopeful and optimistic.
Since I have what’s considered chronic complex migraines, my case is very difficult to treat and I’ve left numerous doctors because of that. I had one neurologist tell me I know more about my health conditions than he did, and I truly believed it. I’m a habitual researcher. And I’ve been through almost everything out there — all that and the kitchen sink, so to speak.
So when this neurologist told me I’d already tried everything out there after reviewing my case, my mind raced. How could I have gone through every option? There was no way. There had to be some more creative measures to take. Something new on the market that might give me at least a little relief. An increase in the dose of one of my current meds. Anything!
My migraines began around age 10 or 11, before I even started my menstrual cycle. Today, my triggers range from hormones, which have been suppressed (that’s a topic for another blog post), to changes in weather, from stress, to exercise, from certain foods to sleep problems. You name it, and I’m triggered. I try my best to control the ones I have the ability to control via lifestyle changes, diet changes, avoidance behaviors, and more. I utilize several holistic treatments as well — the less medical intervention I can get by with, the better in my book.
But still, he shrugged. “I don’t know what else to suggest,” he blurted. “I can’t recommend anything. I think for one, you should stop taking so much medication.”
Cue the rage in me.
I don’t take medication often, and when I do it’s only when I REALLY need it. Due to the fact that I have such frequent migraines and daily headaches, I am all too familiar with the rebound effect. I avoid opioids like the plague. I limit my triptan use due to heart issues. My other rescue medications, I take only at dire necessity. None of these medicines are used as a daily regimen. I’d rather go through the pain for a few days and avoid medication overuse headache. I am terrified to fall into that vicious cycle. I turn to my natural remedies like ice, topical gels, CBD oil, and acupressure for relief before I use any medications.
I could tell the doctor’s frustration with me was rising. He was anxiously running out of ideas but trying to keep the poker face. “Well, then maybe you need to get the behavioral issues under control.”
Again, anger bubbling inside of me. How dare he bring my mental health into this and insinuate this was a psychiatric issue more than a neurological one?! I had already mentioned my bipolar disorder, my recent episode, and that I am seeing a psychiatrist as well as attending an intensive outpatient program. I do my best to take care of my mental health but my decline in mental health is partly BECAUSE of the chronic migraines, not the other way around. I have a mountain of health issues on my shoulders right now and it simply broke me. This is not to mention that mental health problems are comorbid to migraines, meaning we are more likely to struggle psychologically when we live with chronic pain. Despite the link between the two, I couldn’t believe he was sitting there telling me that my mood was to solely blame for my pain.
By this point I was shaking in my seat, ready to jump up and leave. I wanted to run out of there and fall to my knees and scream “WHY?!” I wanted to instill my pain in this doctor, to make him feel what I feel for a split second. I’m thankful I had my mom there at that appointment. She talked some sense into him and explained in the empty places where I was speechless. She was not pleasant about it, either.
Seeing this neurologist has put something into perspective for me, though. After some time to reflect on the situation, I came to a realization: doctors are human just like us patients. They don’t always have magical answers. However, to tell a patient that they have to “live with it” is just downright disrespectful. This neurologist sat in his chair, smug expression on his face, and said “obviously you’ve lived with this for a long time, but you’re just going to have to continue to live with it.”
Again, a punch straight to the gut.
It took everything I had to keep it together in his office. Again, I wanted to cry, lash out, scream, tell him what a coward and a fake he was but instead I sat there, shaking, eyes blurry, holding it all in.
Breathe in. Exhale. Repeat. I didn’t want to give him the satisfaction of knowing he’d upset me so much. Not because he gave me an answer I didn’t like, but more because his bedside manner was completely reprehensible.
This guy was totally self-righteous. A young punk just out of medical school, carrying himself with a better-than-thou attitude, strolling into the office about as personable as a brick wall. But nevertheless, I wanted to give him the benefit of the doubt even though first impression told me he was not going to be easy to deal with. Before we got deep into conversation, I was still feeling fairly optimistic.
Regardless, as I sit here now mulling over the events that unfolded during that appointment, all of it very fresh in my mind, I’m still trying to take away something good from it. That’s my mantra, after all: find the blessing in disguise.
Even though this guy was way too full of himself to treat a patient properly (I’m hopeful that he’ll learn better bedside manner as he gains more experience) as I said above, he is still human just like you and me. He doesn’t have the magic cure-all for migraines, especially not my complex migraine case. He just isn’t equipped for it. I can at least grant him that.
To be honest, I think my case intimidated him a bit. He wasn’t prepared to walk into the room to meet someone who has exhausted all medication options he knows of, plus holistic treatments and lifestyle changes. He wasn’t ready to hear repeatedly, “yes, I’ve tried that” or “I’m already doing that,” etc., etc., etc.
But here’s the problem. Neurologists, while they are considered the typical go-to “headache and migraine doctor,” aren’t as informed and qualified to deal with us as we believe them to be.
According to the World Health Organization, doctors who don’t specialize in migraine and headaches receive only about 4 hours of training on headache conditions. This would include that particular neurologist I saw.
Even in the neurology specialty, as stated by the University of Headache Center, School of Osteopathic Medicine, there are only approximately 1 to 5 hours dedicated to migraine and headache education during residency lectures. Some neurologists spend NO time at all on headache disorders during their clinical residencies, and the average time spent is just ONE hour total. Clearly, there is a lack of knowledge and awareness not just among general doctors but even neurologists — the very individuals we are supposed to trust with our pained brains.
Furthermore, as of 2017, there are an estimated 38 million migraineurs and only about 500 headache specialists in the United States who have demonstrated competence in headache healthcare, as per the Migraine Research Foundation. Some states have no migraine or headache specialists at all, meaning that many sufferers are forced to travel far and wide for adequate treatment. That will now include me, because I have failed all local means of neurological treatment.
But this is one good thing I got out of this appointment: I’ve concluded now that my case truly IS too complex for my doctors close to home. I will have to seek out a more sophisticated migraine clinic with specialists who have dedicated their careers to treating migraine and headache disorders. A place with doctors who “get it.” That will be a big sigh of relief, whenever it happens.
Can you imagine being a neurologist seeing a patient with a 15 year or more history of a complicated chronic condition, such as myself, that doesn’t respond to the average treatments, and you as the doctor are expected to give the patient some hope of a miracle they haven’t tried before? It’s probably not likely, especially with the insufficient education in the field. So again, I’m starting to give this doctor I saw some slack. But he’s not totally off the hook because he was just plain rude to my mom and me.
That being said, I am not letting the negative comments of this doctor get me down. I let it get me down for a good 15 minutes but now I’m back up — writing and fighting. Sure, it’s terribly disheartening to know that a doctor has just “given up” on me and told me to “live with it” but at the same time, I know in my heart that I’m not at the end of my rope. I have a good life ahead of me. I’m going to continue to explore my options, even if that means going out of my state or going to a clinic that doesn’t accept my insurance.
Health is wealth, people. You don’t know the value of your health until you lose it, and those of us struggling will agree that we’ll do anything we have to do for relief. Even after a doctor has “given up” on us, we have to have hope. Always, always have hope.