I think that the most frustrating part about dealing with a chronic illness that can’t be “seen” is having to constantly explain yourself. Over and over again. No one understands the pain and weird side effects that come along with a migraine attack and sometimes it feels like they just don’t care. I’ve been to countless primary appointments, ER visits, and even seen a few specialists that seem to give generic information and send you on your way. It’s hard to get to the root of the issue or find someone that really wants to prevent attacks from occurring.
It’s easy to feel like a whiny crazy person rather than a human being that is actually suffering and just looking for relief and understanding. You see countless medical professionals- or try to get in with one because that’s been a bulk of my frustration as well— and having to repeat yourself to Doctors, nurses, Specialists and the like can be… exhausting.
On this journey I’ve been told to “follow up with my neurologist “ more times than I could count, and when blood work, lab tests and cat scans are coming back fine, it really plays with your mental. Why can’t we put a name to this? Why am I feeling this way? What can I do to feel better? Fix me!!
If you suffer from migraines, I want to give you some words of advice.
Own Your Migraine Journey.
First and above all, I want to remind you that this is YOUR journey. It will require patience that you may not even realize you possess but you’ll need to dig deep because this journey can be a trying one. You may be diagnosed or misdiagnosed. You may have all these crazy side effects and symptoms with no clear diagnosis. It’s hard to explain what you are feeling or going through- one because it can’t be “seen” and two because it may be your first time experiencing it so it’s hard to put into words. When my symptoms were at their worst, I didn’t know the difference between using words like “everything is spinning” vs “I’m feeling dizzy light headed” could lead you in two totally directions down a road of diagnosis or misdiagnosis. I was told vertigo, BPPV, inner ear issues and migraine attacks all in the same week and I had no idea what the differences were between each of them!
Do your research and listen to your body. When you’re feeling off, when your symptoms change and when you notice things— no matter how insignificant you think they are— write them down! People may not understand how you’re feeling or the best course of action to take but YOU want to be in the driver seat of your journey. I learned this the hard way because I relied on Doctors to keep track of my medical history, or an action plan for me.
That led me down dark path of feeling neglected, misunderstood and very confused.
When I started taking my preventative medication it gave me crazy brain fog and messed with my already horrible memory so I had to rely on notes I scribbled down and the information that my husband took from my Doctors appointments. I felt so empowered as I started doing research and reading my Migraine bible, Heal Your Headache and I decided to kick my Excedrin and BC power to the curb. It made me feel like I was finally in control of this illness that has crippled me for so long and has forced me to become dependent on medications everyday. It’s small wins like this that will put you in the driver seat of your journey.
Take notes, go to appointments prepared with questions, do your research and equip yourself with knowledge. Professionals may make you feel crazy because you’re complaining about these phantom pains that aren’t as detectable as other illnesses, but stay the course. You are strong and you are in control of your journey!
Gather your Team of Migraine Specialists
Get a neurologist and make an appointment as soon as you can. Each time I’ve been to the emergency room, my primary care, hell even my migraine specialist- I was advised to follow up with a neurologist. Its my fault for living in this city for almost 10 years and not having one but I became super frustrated when I couldn’t get the answers I needed because I didn’t have someone to follow up with. Build your team of Specialists and see them regularly so you have a history to compare against and you can start to build a rapport with someone. In cases of an emergency, you don’t want to be without one. Trust me, it’s not fun.
Get Organized and Write Everything Down!
Keep a “headache “ diary and a headache folder/file with you. Write down what you eat, when symptoms start, how long they last and what changes you experience. Not only will every medical professional that you see ask you this, but it’s helpful with understanding your potential triggers and trying to connect some dots on your journey.
Understanding your triggers is HUGE but it’s not as easy as… I ate this, then I got a migraine. Sometimes it’s a combination of things, sometimes it’s a weird side effect of a medication you may be taking or a change in the weather. I know, frustrating. You still need to keep track as much as you can and when the lines start to blur, assume the “standard” triggers until you are proven otherwise.
I’m a classic migraine sufferer. I noticed early on that strong fragrances like perfume or cigarette smoke are instant triggers for me. I also discovered that wine and liquor (I haven’t determined the type yet so I don’t drink anymore, just to be safe), lack of sleep or skipping meals, STRESS, foods that contain nitrates like hotdogs and sometimes processed meats, and not drinking enough water will bring on a migraine for me.
When I discovered the book “Heal Your Headache” I felt seen and heard. Suddenly so much of what I have experienced made sense and it really changed things for me.
I now try my best to stick to the HYH diet by eliminating other common triggers such as nuts, certain cheeses, citrus fruits, fermented foods like pickles and olives (these two were so hard for me to give up), chocolate etc. I carry this book everywhere with me and everything I feel, every question I have, I reference this book first. It’s such a great resource and it’s one of my favorite books of all time!
Write down what you are feeling and refer to your notes often. I also keep a “migraine folder” in a pocket of my planner that has all of my appointment reminders, a copy of my labs and tests that were run, important information about my diagnosis and notes that I took from Doctors appointments. It helps having everything together for easy reference for yourself or the next medical professional that you need to see.
Find a support group for Migraines
Having a support system is critical here. My husband husband has been supportive and I don’t want to imagine walking this scary path without him. When my symptoms have peaked to the point where I could barely walk or stand up myself, he literally held me up and has been my rock. He has helped me take a shower when I was too dizzy to stand, has come to just about every appointment I’ve had and been along side me, asking questions and taking notes, he even asks me throughout the day how I’m feeling and what I need. The support that you receive from loved ones is crucial to making it through this wild ride because friends, it is tough.
But you will also need the support of someone who has been there or can understand first hand what you are going through. Find your support group and lean on them too.
I’ve been a “silent sufferer” of migraines for over 20 years now. I never imagined that I’d be leaning on other people for resources and encouragement for what I’m going through. When my symptoms started presenting themselves in a different way a few months ago, I knew I had to share my experiences and I knew I needed help and support. I now read blogs like The Dizzy Cook and Migraine Strong regularly and I have joined the Migraine Strong group on Facebook.
I find peace in knowing that I’m not alone and I have people that I can go to for help, shared experiences, or just to vent. I’m in the group more than any other group on Facebook now and if I’m not asking a question, I’m searching archived conversations or engaging with people to learn, share and just be “heard.”
With all the crazy symptoms and side effects I’ve been experiencing and the lack of medical support I feel like I’ve received, I can’t imagine going through this journey without the encouragement and recommendations of fellow migraine sufferers.
I hope that these recommendations have helped you in some way. If you suffer from migraines please know that you aren’t alone and you don’t have to suffer in silence. Find your team and support group and execute a plan that helps you win more migraine free days! I’m here if you have any questions and of you just need to vent I’m happy to listen too. Let me know how you’re feeling in the comments!