Like Many Other Things in This Time Period, My Migraine Care Has Been Downgraded To Hysteria

Me, a blonde white woman with curled hair taking a selfie in the mirror Im wearing an off the shoulder cut up black Def Leppard T-shirt
A Hysteria t-shirt would’ve been far superior, but you get my drift.

Being a woman in 2022 is certainly something I’ll tell you. It’s reminiscent of what I imagine being a woman prior to heck, the 90s? was like.

Going back over a longer span in time though, we have a deeply troubling history in medicine of treating common disorders, primarily those that afflict women with pain and relatively untestable symptoms as hysteria.

Women were regularly institutionalized for these things well into the 1900s.

For someone my age, almost 25, I haven’t had to navigate the troublesome world of healthcare physicians that still lean heavily into these beliefs.

I’ve often found myself struggling in conversation with more elder members of the migraine community who discuss the kind of gaslighting and suggestiveness that migraine is all in our head. And for this, I am fortunate. These kinds of stigmas about chronic illness aren’t the ones I’ve dealt with the most, but today I’ve come face to face with this horrible kind of care.

I’ve found myself in a rather difficult situation with securing a doctor to manage my migraine care since moving. For a while the pandemic offered relief of tele-medicine and I was able to retain my long term Neurologist who I’ve worked with since high school. But rules change and that access was lost in early 2021. I sought local care while waiting to connect with a more specialized doctor that Spring. The local doctor was nice, helped me get the prescriptions that were new that I wanted to trial, and was very glad I’d be seeking more advanced treatment.

Shortly thereafter I connected with my Headache Specialist. He’s a really wonderful doctor and has supported me for almost an entire year. We’ve trialed the latest medicines as they hit the market, and done more exploratory options that are considered non-traditional treatments, along with testing out new devices, all with minimal success. Much of this is due to my autoimmune disorder competing with some of the newer developed therapies. We’ve pretty much run out of options, but since January I’ve been going through administrative hell with his support staff to get routine things like Prior Authorizations submitted and medications I’ve been on for years submitted with more than a single refill.

This administrative failure means I cannot confidently continue my care there as a lack of timely paperwork could be the difference between keeping or losing my disability insurance during a review.

After careful deliberation and seeking input from other community members who have been in similar situations, I decided it would be best to return to the doctor whom I’d seen here locally who could manage my migraine care on a maintenance level.

The reality is, the specialty clinics within reasonable distances from me do not want me as their patient. They don’t believe they can treat me. Other headache specialists are hours away, and since we’ve already gone through all current treatment paths, it doesn’t make a whole lot of sense to drive for hours to take valuable appointment time when my treatment plan likely will not change for a few years, barring new scientific advances beyond the current CGRP research.

So a plain old neurologist who can continue prescribing my existing medicines and help with any prior authorizations I may need seems like a reasonable solution. Especially one who is local.

Now, I’d had a good interaction with this doctor when we first met, so I didn’t presume this would be a difficult appointment. If I had I probably wouldn’t have scheduled it for a week I have multiple other appointments.

We had this appointment virtually.

Right off the bat this appointment stunk. I had dropped off some notes going over my migraine care and other relevant health information from the last year to catch him up and he read this prior to our appointment. (which great, always helpful) He immediately started off by telling me that he does not want to be my doctor. He believes I need to be working with a highly specialized clinic who has a broader scope of knowledge than what he brings to the table in order to provide me with adequate care. And reading it like that doesn’t sound all that unreasonable, sure but if you don’t want me as a patient just cancel the appointment don’t make me sit here and be berated.

He continued on with expressing that he knew there were no local headache clinics, even within upwards of 250 some miles. He knew that none of his coworkers or doctors within our broader hospital system were equipped to manage my case.

It didn’t seem to matter to him that my goal was to maintain my current level of health and that there are no additional routes at this time, nor is it feasible for me to remain with a specialist who cannot fill out my paper work.

He made it abundantly clear he didn’t want to be a part of my care team.

The appointment didn’t end there.

He began inquiring about if I’d ever sought mental health care, or if that was something I was interested in. He wasn’t satisfied with my answer that I’d looked around and hadn’t found a practice that was a good match, that offered telehealth, or that was currently accepting patients.

He continued this line of questioning, doesn’t living with a disease so debilitating make you depressed?

I again offered an unsatisfying answer about the different steps I’ve taken in my life to prioritize things that bring me joy, touching on the various aspects of my support system and how these keep me in a relatively good headspace where I’m not dwelling on all that I’ve lost to this illness.

He furthered the pressing question regarding my other doctors that I’ve seen, if they’ve ever suggested I seek counseling. And frankly, they haven’t. My OBGYN at one point early on in the pandemic offered me some names of some counselors to discuss more emotional aspects of having just moved and being isolated. Not one of my physicians has ever so much as hinted at seeing a mental health professional due to migraine.

Another unsatisfying answer to him.

And why was he pressing this so hard? Well because he wants me to see a Psychiatrist. Because he has never met a patient he is so impressed with, who is so intelligent and bright and well spoken, who appears to be doing so well while living with such a debilitating illness. And he thinks I am obsessed with migraine.

That perhaps migraine has been a secondary headache disorder this whole time and I am actually suffering from Obsessive Compulsive Disorder.

Direct translation: you’re so obsessed with this that you have successfully faked us all out and I don’t believe you are ill with a neurological disorder, but rather ill in the mind.

Now, I’ve paid enough attention to mental health advocates over the years that obsessive behaviors as described here doesn’t actually translate over to OCD and if we look at the clinical criteria for OCD (as opposed to the more stigmatized assumptions of what OCD is) I do not fit these definitions all that well. Perhaps the doctor could have been more precise with his language and suggested I have a severe affliction of hypochondria.

He offered this idea that I am obsessive over migraine, repeating to me numerous times that migraine rules my life, and so on. That he would just feel a lot better if a psychiatrist was able to evaluate me and convey back to him that I do in fact have migraine disorder and not some twenty first century flavor of hysteria. My words obviously.

I can’t quite put together the picture of obsession he seems to have. Since late 2019 my entire health focus has actually been on other things, which could balance between arthritis and my unfortunate run in with Lyme disease. Even my more hormonal stuff over the last year would be categorized as the OB’s problem, not a migraine one as we worked with adjusting hormones to just see how it all went.

Aside from some in depth research into hormonal birth control’s impacts on bone density with cross referencing of previous migraine medications to ensure there weren’t any clear and concise bone density impacts with one of them, I haven’t done in depth research related to migraine in a really long time.

I wouldn’t consider tracking my results with various new medicines to be in depth research and I wouldn’t consider community based conversations comparing side effects and co-morbid conditions to be anything more than trying to get answers that haven’t been researched yet.

Which essentially puts me all the way back to the summer of 2019 when I was deeply engaged in my lifestyle program designed to improve migraine being the obsessive time period where everything in my life revolved around migraine.

Shortly after that summer I even stopped writing in depth outside of more educational posts about migraine either based on my experience or focusing on creating more accessible health communication and migraine awareness. I mean we went from 111 posts being published in 2019 to a comparative 28 posts last year. When I hit publish on this post that’ll mark number 8 for the year.

I have sat down probably on 3 occasions since I moved to do a more in depth analysis of my personal headache history, once to create a chart I could present to my new doctor that I definitely had good intentions of keeping updated (didn’t do that), a second time to take a look at medicine effectiveness where I tried to gain an understanding of 1) when my meds worked vs didn’t and 2) how my migraines behaved when they were treated vs untreated, and finally this last spring to put together a pattern of migraines following my new hormonal cycles.

The first had the potential to be really useful in the long term tracking of my migraines, and maybe I’ll update it, but it isn’t all that reliable when I’ve had multiple other health things flare up so migraine isn’t being tracked on it’s own.

The second gave me insight no doctor had been able to: why my meds worked when they did vs when they didn’t. It had turned out on a lot of occasions I was taking my medicine way too late into a migraine attack. Because of that research, I was able to change my behavior and treat migraine attacks earlier on which has tremendously increased how often my meds work.

The third instance wasn’t on my own accord. My OBGYN and I went into getting my IUD knowing that either my migraines would get better, stay the same, or get worse, and so in my follow up with her this tracking and arranging it into a pattern confirmed that after my migraines leveled back off they progressively worsened and we adjusted my hormones accordingly.

And all of this research? Comes from approximately 3 minutes each day, split in morning and night where I document on a color coded calendar a pain average over 12 hour intervals and jot down if I took medication.

Not exactly my most in depth tracking system that I’ve had over the years and this one has been pretty much the same for 3 some years.

This system is important as keeping a running average of this migraine disease helps ground any progress and gives me something to look back on if a new theory arises about a pattern that may or may not be present.

It also helps define progress for doctors and social security on how impacted my functionality is on a month to month basis. Because I receive social security, I do in fact have occasional medical reviews. I can’t show up to these with zero information and having now moved multiple times and switched doctors a few more, these charts help bring visual aids to catch up doctors and convey what my experience is like since I no longer have the privilege of having a physician on my care team who has experienced the ups and downs alongside me.

I am unfortunately, well adjusted to this life.

I am not in crisis because I have migraine every day. There isn’t a whole lot of thought applied to it on any given week.

When things change? I track it. When I trial new meds. I track it. Then I go so far as to share my patient experience with the world because I think it adds value.

I don’t have any alerts set up to notify me of new research.

I don’t spend my day creating educational resources, numerous twitter threads full of information, or really any amount of time dedicated to talking about migraine. I actually gave a pretty firm middle finger to the whole concept of advocacy.

Sometimes when I meet someone new I get to share what I consider a lot of information, as folks are curious and have questions and I don’t mind helping them understand how it impacts my life. Sometimes, like two days ago, I end up in conversation with my mail man who sometimes gets bad migraines too and the most in depth part of the conversation is the general understanding between the two of us that I basically feel like I’m hungover all of the time without any of the fun.

Really the only time I rehash things is when I’m creating a document for a new doctor. Usually no more than a page of very compressed information, they can read my medical records if they feel so inclined.

And every doctor I’ve ever had has really enjoyed my little color coded charts. They enjoy that they get to keep them. They find it useful to see what my priorities are and how I interpret my pain and how it impacts my day to day life. Some doctors have assumed I was in medical school, which is kind of flattering considering just how much work I did years ago to catch myself up and learn about migraine so I could be an informed member of my care team and advocate for myself.

But surely, the conclusion I come to is that because I had to advocate for myself and familiarize myself with what treatments would be hitting the market and what may be a good fit for me. And surely because the last few instances with both Qulipta and my hormonal mess turned into slight science experiments guided by my physicians, surely being engaged in getting the best care I can and finding that elusive remission in a time frame where I still have life left to live on a planet that hasn’t died means that I am obsessed.

Of course, this history I’ve laid out for all of you to read giving context to it all isn’t something he’s aware of.

I could probably put together a very well rounded argument in favor of me being obsessed with just how shitty the healthcare system is over the last 3 years and that would amount to much more of a definable obsession than my monitoring of chronic illness number 1.

I am merely a healthy presenting person who by all logical conclusions must be absolutely miserable living off of a petty change and because no treatments have worked despite there being many logical explanations for comorbid conditions interfering and general statistics on likelihood of reverting back to episodic migraine, I am in fact just mentally ill.

Or as politely as he put it, would feel a lot better if my very well put together self had a psychiatrist rule out that I am not mentally ill. That mental illness was not causing this genetic condition of mine.

I logically cannot piece together how acknowledging that all parts of my life and how I live have been altered to accommodate migraine in some way equates to the behavioral concept of compulsively thinking about said disorder that never gives me a break from pain, but alas I am not an elder man in the field of medicine.

Just a hysteric young woman wasting away her precious birthing years.


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