When you have lived with a chronic illness for as long as I have, you know your body very well. After all, I have been living in this body my whole life... and with migraine since I was 18. Two of the biggest hurdles we face in the migraine community are people not believing us and people thinking they have the magic answers to "fix" you. Today I want to focus on the latter.
When I was waiting in urgent care (for what felt like a week ugh) when I hurt my back, I had to go over my history, meds and conditions with the nurse. When the elder nurse practitioner finally came in she was nice, sympathetic to my back pain but pushed a major button. She was going over my meds and I I told her I was on amitriptyline right now, 10mg a day. She looked at me and exclaimed, "WHY are they keeping you on that? You need to get off that and on Topamax, that's what will work!" When she was trying to decide what meds to give me she said, "And there isn't a change you're not pregnant?" She looked at me like I didn't know where my 2 kids came from... I have PCOS and with that comes very irregular periods. I told her that I was 100% positive I was not pregnant. She told me I had to take a pregnancy test before she would prescribe the muscle relaxers.
Look, I totally understand being cautious and careful - I am the queen of that especially when it comes to meds and my potential babies! I don't mind having to take the pregnancy test. I DO mind when someone that is a perfect stranger tries to act like they know more about my body and chronic conditions than I do. That makes me want to yell, "Hey stranger you don't know me! Back off!" For a nurse practitioner at an urgent care to tell me what meds I need to be on for my complex neurological condition... NO! I explained to her that I am sure lots of people have success with Topamax but I can't take it because my husband and I want more children, and I left it at that.
For every single med and treatment I take, it is a very personal decision. I have to weigh the pros and cons to decide if it fits what we want for our life, because migraine doesn't just impact my life but my entire family unit. Side effects, expense, drug interactions and a hundred other points get factored into these choices. I love having open, honest conversations within our migraine/chronic illness community about different meds and how it may impact me, because there are a lot of side effects that the doctors may not tell you. We each react differently, so these conversations are simply about awareness and support for each other. It is amazing to have people in your corner that can answer questions from their personal experiences. What I don't love is random people trying to force things on me when they know nothing about me and are obviously ignorant about my disease. These people also have no clue what I have tried in the past! Sorry, but a giant dose of riboflavin will not "fix" me... I have tried several combos of many vitamins and for me, personally, they didn't help at all and just cost us a boat load of money. That smoothie you think will cure me will actual do more harm because you don't know that I can't have the stevia in it. Chiropractor ... nope made me worse. The list goes on and on and on and on. Just because it helped your neighbor's best friend's mother-in-law doesn't meant it's a magic bullet. Her migraine disease is not my migraine disease. That is why this thing is a BEAST. It's not one size fits all and it can't be treated that way- by doctors or strangers! A lot of people have their heart in the right place when they think they are helping, but I can only handle so much. Genuine compassion and zero sales pitching is really what we would like, because I know that stranger or random nurse doesn't have the "cure."