Finding Your Footing with Migraine Treatment

Migraine can be confusing and the treatment options can be as well. How did you get more familiar with the options and combinations available to you?

How did I manage when I was diagnosed with migraine?

When this journey started, I did not know anything about migraine. I didn’t know this is what my symptoms were from either. I struggled with many different issues related to migraine. Since I did not know what was going on, I did not know what to do about it. Then, while hospitalized, I was told, “you have migraine.”

How did my conversations with my doctor go?

At first, I did not do any research. I took the doctor’s word on all medications and treatments that were offered. I was an “ok” person. Here's an example how a conversation would look between me and my doctor:

Doctor: We are admitting you.
Me: Ok.
Doctor: I am putting you on meclizine.
Me: Ok.
Doctor: We will add Verapamil and Compazine.
Me: Ok.
Doctor: We will prescribe Phenergan and Gabapentin, along with your other medications.
Me: Ok.

Why was I afraid to push back or ask questions?

I think I was afraid to ask anything or go against the doctor. I equate this to me personally being in my early 20s. I also want to say that I had not been diagnosed with many of the chronic illnesses that I currently have.

What other conditions was I diagnosed with?

I want to say that migraine was the first chronic health issue that I was diagnosed with. It seems that after that, within a few years, more things kept coming. I have seen that many will have comorbidities such as autoimmune disease, diabetes, dysautonomia, and other issues, along with a migraine diagnosis. Here are just some of my other health issues:

• Gastroparesis
• Ehlers Danlos syndrome
• Autonomic dysfunction
• Primary immunodeficiency
• Mast cell activation syndrome

How did I start advocating for myself?

I stopped just taking the doctor’s word on prescribing medications and other related treatments. Then thought to myself, that, this is my body. I am the one who must deal with whatever side effects come. I started researching what they would say to me. Even when given a prescription, I would read the entire patient leaflet. Finally, I found that we are our own BEST and FIRST advocate.

What can you do at the doctor's office?

Of course, it can be hard when you are not used to speaking up, but it gets easier. Here are some tips that have helped me along the way:

1. Bring a notepad to appointments, if needed, to write down information that is given to you.
2. Have a written log or journal on an app of your symptoms. For example: date, time, what you were doing and how long it lasted.
3. Do not just settle for what is said by your doctor. You have the right to ask questions/clarify information.
4. To stay in the know, join online support groups and sites dedicated to the condition.
5. Something that may shock you: Your doctor may not have heard of everything out there. Share things you have found on your own.
6. Bring evidence to support. Print out the medical article. If you got it from a webinar, share that with them also.
7. If you are not comfortable talking face-to-face, send them a portal message stating your worries or asking questions.
8. Communicate!!! No matter how you do it, do not be afraid to communicate your needs and concerns.

Do my doctors respect how I approach appointments?

Most of my doctors love that I come prepared. My neurologist will ask me what I think we should do. If there is something he has not mentioned, but I want to try it, I bring it up to him. I will tell him if something stops working, or, if I feel the strength should be increased. I believe that if you establish a good rapport with the provider, it makes everything better.

Age, along with experience with disease/illness, has helped me to be the researcher and advocate that I am, in my medical journey. Because, if we do not, how can we expect others to?