Time for a Change: Thoughts on New Care

For many who live with migraine, the process of visiting a new doctor can be a frustrating and vulnerable experience. For one, developing the language to be able to communicate our own personal pain, symptoms, and triggers can take a lot of practice and continued communication. It can take a long time to develop a relationship with our doctors, wherein we are effectively communicating about our condition, and visiting a new doctor means beginning the process of building that relationship all over again. There are also temporal and monetary considerations that come with seeing a new doctor, which can be sources of anxiety as well as deterrents for many patients. At the same time, seeing a new doctor can also be immensely productive and necessary for patients to progress in management and treatment plans.

When is it time to find a new doctor?

It can be difficult to know when it is time for us to seek different care and even more difficult actually to get that care. Sometimes we grow accustomed to or attached to our providers, but the treatment and management we are receiving aren't enough. Other times, we experience relationships that just aren't good, wherein we are not believed or treated well. In many cases, It takes a lot of self-advocacy and research, as well as honest evaluation of whether things are working with the current plan and provider one has to decide when and if it is time to consider a new care professional. Questions I have had to ask myself in the past are:

• How has my quality of life been affected since beginning treatment?
• How long have I been on this particular management plan?
• How many different routes have I tried with this particular care provider?
• Is my relationship with this care provider beneficial?
• What do I foresee in my future with this care plan? 

Asking these questions has allowed me to realize when I have needed to ask my care providers questions about options available to me beyond what we have already tried.

My experience getting new care

When I was being treated for migraine in college at my university's health center, and again after graduating when I was being treated at a local family practice, there came a point where I needed to seek out information regarding getting treatment from a more specialized doctor. After some time spent working with migraine management plans that simply could not do the job, I realized it was time for something different.

Luckily for me, my doctors were forthcoming about the limitations they had with finding solutions to manage my chronic migraines any further and enthusiastically suggested that I seek out a specialist. The process of finding a specialist may be a lot more accessible if you can obtain a referral from a doctor who already knows your condition and has worked with you on treatment and management planning before.

Starting from the ground up

For a lot a patients with chronic illness, it can be tough to talk about what we are experiencing without running into complications of being misunderstood and having to start from ground zero with each new care provider can be exhausting. Not only are we meeting a complete stranger and having to tell them a whole history of ourselves, but we are also beginning a new relationship that requires us to trust in these new doctors. Many with migraine know well that it can be tough to build that trust. In my experience, going to a new doctor certainly feels like entering into a different world each time. The office, the faces, the procedures are all brand new. But...some things remain familiar: the paperwork, the questioning, and the fees just to name a few.

My trip to a new neurologist

Immediately upon entering the neurologist's office, I felt uneasy. For one, doctor's offices, in general for me, rarely include good news. I also knew I was going to have to go through everything. All. Over. Again. The questions, the history of head pain, the blood work, the skepticism over whether I would be believed and understood. It was going to be a lot. And... I just knew it was going to be expensive. But, I was already there, so I tried not to let the negative thoughts influence my attitude too much and checked in to my appointment.

The doctor and the nurse practitioner were incredibly nice and provided me with a lot of beneficial information. I came away from our meeting feeling hopeful that they were expertly involved with treating migraine and that they would be able to help me get onto a regiment that worked a little better than my previous one.

Awesome! I thought. I had blood work taken (quite a lot) and had an in-depth conversation about available steps. I could immediately tell this would be a different kind of treatment than I had previously experienced. And I was actually excited...but I also still felt a bit skeptical and wary.

Doubts started to creep in

Even though the doctor and NP were overwhelmingly accommodating and seemed genuine about getting me into their care, in the back of my head, I couldn't help but think about some of the not-so-great considerations of seeing this new practice. First, this was a provider whose offices serviced thousands of patients. I certainly felt wary that I might be just another number.

It was indeed very expensive, so much so that I considered not going through with the appointment at all. I ended up having to pay almost $400 out of pocket just for the co-pay. I felt as though I had to balance my feeling of needing to be seen with not being able to afford it the entire visit. That definitely overshadowed my ability to get to know these providers very well on the first visit. I just didn't know if I could realistically afford a follow-up...

...and an MRI, and a second follow up, and a visit to my gynecologist (to pursue further information about birth control that would not interfere with my migraine treatment), and a visit to my dentist (to ensure there weren't any dental issues influencing my migraines and contributing to my head pain) ... just to follow up at the neurologist.

It was a long, overwhelming laundry list.

Maintaining realistic expectations

I knew it was time for me to find a different route for treatment. Though I was excited to be able to meet with a more specialized doctor, I also felt extremely overwhelmed with the fees I was going to have to pay just to be seen, the labs and scans I knew were to come, and how much they would be, and the long road ahead to building trust with this new team of healthcare professionals who served tons of patients.

Having had a glimpse into the window of more specialized treatment but feeling there was a huge barrier to entry, I decided to research more options.

Keeping hope

It can be challenging to find care that actually works and makes us feel good about as migraine patients. What works for one patient may not work for the next, and some treatment and management plans are inaccessible due to financial or geographical barriers. I try to keep hope and advocate for myself and ask questions to make my own treatment and management more accessible, and I remind myself that it will take time but that it is worth it to continue to try.

Have you had to find more specialized treatment or a different care provider to continue your migraine management? Was your experience positive? What were some of the feelings you had when meeting a new doctor for the first time? Let's discuss in the comments!