It’s OK to move on if you aren’t getting the care you need.
I saw 7 different doctors before finally settling down with my current neurologist.
As I sat at my initial appointment, he was thorough in his examination, he listened, and he acknowledged my symptoms. For the very first time I felt heard.
At this point in my migraine journey, I had been suffering with 24/7 dizziness, nausea, vertigo attacks, and dissociative symptoms that were downright scary.
Because I didn’t get head pain with my attacks, previous doctors hadn’t linked my symptoms to vestibular migraine.
I was on the brink of losing my career in watch design and hadn’t been able to drive for months. I needed help and I needed it fast.
In order to get the most out of my appointment, I made a list of everything I had tried so far, what symptoms I experienced in detail, and what treatments I thought might be helpful based on personal research.
As we were going over medications, I told my neurologist that it was important to me to try to start a family soon and I was concerned about weaning off certain meds. None of this was an issue for him, and we tailored my treatment plan to try things that could either transition into pregnancy, or that I would be able to come off of easily when I was ready.
I’m pretty sure I heard the “Hallelujah” chorus right there in the clinic.
Due to various factors, from in-network provider restrictions to insurance coverage to location, seeing 7 doctors isn’t necessarily the norm or an accessible option for most people. But, many people living with chronic migraine do struggle to find the right migraine doctor.
So how do you know when it’s time to move on or that your physician might not be right for you? These clues may help.
They dismiss your symptoms
I had some of the most popular neurologists and ENT’s in Dallas telling me that my episodes of vertigo, constant dizziness, and feeling like I was falling or walking on marshmallows was just because I was stressed and needed to relax.
How can a person not be stressed or anxious when they feel as though they’re losing their health… and their mind?
If your doctor is dismissing symptoms that are causing you to lose your independence or significantly affecting your job, consider getting a second opinion.
A few other red flags I see that fall under this category are when they refer to your migraine attacks as “headaches” or downplay the severity. Migraine is a neurological illness and should be treated as such.
If you find yourself coming to appointments with research that your doctor has never seen, or you spend the bulk of your appointments educating them, it’s probably time to find a specialist who can match your passion for healing.
Your first appointment is super short
Unless you’re seeing your doctor for regular follow-ups, your appointment should be lasting longer than 10 minutes.
An initial appointment that’s so short wouldn’t allow you time to discuss any new symptoms, changes to your treatment plan, or for them to pick up on cues that you might be forgetting to tell them.
Ideally, a full exam should be performed at your first appointment, and you and your physician should go over your symptoms in detail.
When you feel rushed, it’s easy to forget all the things you want to ask or say.
Bringing a notebook with questions can help, especially for any brain fog, but creating a dialog with your physician is so important. You should feel comfortable discussing side effects of prescribed medications, or any fears you might have about starting a new one.
They’re unwilling to listen
With the right migraine specialist, a partnership will be formed — one where you both listen to each other (yes, this goes both ways).
Like any relationship, if you feel as though someone is just talking at you and not listening to what you’re saying, it’s difficult to make any progress.
This was a huge issue for me in the beginning, and I know many doctors wrote me off as a “dramatic woman.” I would find them only talking or listening to what my husband had to say when he was in the room with me.
What you’re going through with a migraine disorder is real, it’s valid, and it deserves someone’s full attention.
If your specialist isn’t listening to you, especially when you come prepared with research or ideas, they might be missing some big clues that could help you find the right medication or treatment.
You met someone else
If you go into an appointment and leave with more questions than you started with, you might need to consider finding a specialist who can communicate more effectively or who’s more specialized.
Often this takes a little research, but certain types of migraine, like ocular, vestibular, or hemiplegic, require doctors that are familiar with those types of symptoms and treatments.
For instance, some of the medications I can use for vestibular migraine are very specific to that type of migraine and won’t necessarily work for all types.
If a doctor typically sees patients with head pain and isn’t used to managing someone who has primary symptoms of vertigo or derealization, they may not have enough knowledge in that area to give you the best treatment possible.
This can be the difference between a neurologist or headache specialist and a neurotologist.
It’s OK to move on and meet someone else, or even get a second opinion.
They say there’s nothing more you can do
With new medications and neuromodulation devices coming out recently, options for people with migraine are expanding rapidly.
If a doctor tells you that you’ve tried everything and there’s nothing more that can be done, all that means is there’s nothing more that they can do for you.
Occasionally, the right physician is difficult to find in certain locations and people with migraine used to have to be open to traveling for an appointment.
My husband and I drove 16 hours to see one specialist because we were originally told I shouldn’t fly (it actually was fine for me to do once I saw the right physician).
Now, with teleconference and phone consultations becoming the standard, it opens the door for many of us to finally receive the care we deserve.
Alicia Wolf is the owner of The Dizzy Cook, a diet and lifestyle website for anyone with migraine, and an ambassador for the Vestibular Disorder Association. After struggling with chronic vestibular migraine, she realized there weren’t many upbeat resources for people following a migraine diet, so she created thedizzycook.com. Her new cookbook “The Dizzy Cook: Managing Migraine with More Than 90 Comforting Recipes and Lifestyle Tips” is available almost everywhere books are sold. You can find her on Instagram, Facebook, and Twitter.