What’s your diagnosis and where does that lead you with Migraine?

migraine label

Millions of people are diagnosed with migraine and every case is different.  So what’s your diagnosis?  What’s my diagnosis?  What does it mean to be diagnosed and how does that help?  Here’s my non-medical opinion.

I have my Master’s degree in special education.  It has been really helpful in understanding how the brain works, fails and where diagnosis and treatment can lead.  I think an example that I can best use to describe the migraine spectrum is comparing Autism to Migraine.  

If you have ever met someone diagnosed with Autism, you understand that that person is an individual and like no one else (and aren’t we all?).  Although, these individuals possess some similar factors that place them onto the Autism spectrum.  Does every person with Autism look the same, act the same, react the same, learn the same way, and have the same health and reactions to treatment?  The answer is an obvious no.  Where one person may seem to have some slight social issues and not much more, another individual may need 100% care for various extreme behaviors.  You may have a full conversation with one person and another may be completely nonverbal and ambivalent to personal interactions.  While one person may see improvement with dietary and behavioral therapy others may require heavy medications and need full time care with little improvement.  Everyone is different!

I have seen my neurologist for many years and I decided to ask her what my diagnosis was recently.  I knew the answer was a Chronic Migraine sufferer with neck and shoulder issues caused from migraines which is called Torticollis.  At the beginning, it was important to be diagnosed with something.  It gave me great relief that I, indeed, was sick and not making it up issues as I was led to believe by so many.  With my diagnosis I felt vindicated and believed since I was diagnosed, I would be cured.  Years and years later, I know better.  My diagnosis is no longer as important as my journey.   I have been through so many medications, therapies, and procedures that I’m not as concerned about my diagnosis versus my treatment now.

So why ask about my diagnosis?  Like I said, at the beginning it was huge!  It provided me a starting point and that is what seems to be the best place to start.  Just like people diagnosed with Autism, it’s only the beginning and an idea of where to begin with therapies, tests, treatments and more.  It puts me into a category that I need to find where I fit.  I no longer go into my neurologist to look for a cure.  I don’t think she is going to hand me a script for a pill that will make my disease go away.  I was stuck in this mindset for years! 

I now know it takes work!  Just like in teaching,  I know I can help  at school but work needs to be done at home.  They can’t come to me to solve their shortcomings like I can’t expect my doctor to help me without putting in the work myself.  My diagnosis has become the place I started and the road that I have travelled. 

I helped with the process of diagnosing students and I had parents fight putting a label on their child.  All of us have labels. My diagnosis doesn’t define me.   I think it’s what you do with knowledge of your label and what you do with it.  You have a choice to ignore it, to get more opinions, follow your path, and problem solve along the way.  Once I realized I wasn’t going to be cured and that I needed to fight with a well-rounded approach of many therapies and life style changes, I was empowered.  My label is just part of who I am.  I am a mom, a wife, a daughter, a sister, an aunt, a friend, a teacher, a blogger, a dog and chocolate lover, a travel enthusiast, a Chronic Migraine sufferer and so much more.

What’s your diagnosis? 

How do you feel it defines your journey? 

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11 thoughts on “What’s your diagnosis and where does that lead you with Migraine?

  1. I just recently switch neurologist/headache specialist who tacked on the chronic migraine sufferer too but I also have HM. My sister and my daughter had migraines. My sister also has the HM and chronic migraine, my daughter only migraine with aura. It least I have her to bounce off ideas and compare auras with and she can truly understand my diagnosis.
    We are migraine warriors!!! We are strong!!!

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  2. I’m a double diagnosis. I get menstrual migraines every single month, with mostly abdominal symptoms (i.e. 2-3 days of vomiting and feeling like my stomach is tying in knots, inability to swallow most anything, and a mild but completely tolerable headache.) And on rare, super awesome and completely unexpected occasions, I suffer from HM; generally only a few times a year now but they were much more frequent in my late teens and early twenties. Nothing like going about your normal life and suddenly feeling like you’re having a stroke. 😒

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  3. Pingback: My Migraine Life 2016 highlights | My Migraine Life

  4. That is quite an interesting perspective. I think you’re spot on with the importance of having a diagnosis to use as a starting point. Great post.

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