Get Real About Migraine: Judy’s Story

Chronic Migraine Awareness, Inc. is pleased to present the first story in our series.

My name is Judy from Australia, I’m 39 and I have lived with migraine since I was 7 years old. 

I have experienced symptoms which include; slurred speech, photophobia, phonophobia, vertigo, brain fog, facial pain and swelling, allodynia, vomiting, pulsating pain, aura, increased blood pressure, balance issues and muscle weakness.

I’ve lost many days with family and friends due to migraine attacks as well as leaving an educational institution due to nasty symptoms. I have had many hospital visits and was lucky enough to have doctor – in my younger days – who would visit me at home because I was too ill to be moved or even get to the hospital.  I could never thank him enough.  Sadly, Dr. Nelson passed away a few years ago. I think it’s important to mention anyone who has had a special impact on me during my life. 

My migraine disease journey has not been easy. Hopefully there is light at the end of this long, hard road and we’ll surely see a cure somewhere on the horizon. I continue to hold on to hope.  and I can only hold on to hope.

Here are some things I need to take into account while living with migraine disease;

Talking to me causes me pain and discomfort as does any sound – #Thisisphonophobia

Protect myself from light as it  increased  the intensity of a migraine attack and seems to impact my entire body.#ThisIsPhotophobia

Stay away from  strong odors as I’m very sensitive to them and make my nausea worse. #ThisIsOmophobia

I understand people are trying to be kind and mean well, but please don’t bring me food. I can’t stomach it. 

Alloyndia means I experience sensitivity to touch – please no touching – as anything that touches me is painful.

During a migraine attack please let me be in my darkness and do not disturb. This is the best thing you can do for me and I will love you for it.

Please don’t make me give up my fan as I need it during my hot flashes.

Keep a bucket near me so when I’m nauseous and vomiting I don’t have to go far and stumble to the toilet.  Moving during a migraine attack is a real struggle and exhausts me.
I’m very faint during a migraine attack and I urge people to not rush me.  Staying put is best and does not agitate my symptoms.

Speaking can sometimes be difficult during a migraine attack and I often have trouble finding words and/or stumble over them. I experience extreme brain fog due to migraine disease and the other chronic conditions I live with. I find writing easier than speaking, as this gives me time to think about what is coming out of my head, instead of being put on the spot.   

I’m a shy person in general however with my passion for advocacy, creating graphics and writing online I may appear to be the complete opposite. Through my creative writing  I get it, I understand,  care and have your backs!  

An estimated 1 billion people worldwide live with migraine disease. Our struggle is real, and I truly believe together we can all make a difference. Knowing I’m alone in this struggle makes all the difference, thank you to our wonderful migraine disease community.

I advocate for chronic illness, migraine and mental health. I am a published writer, a contributor in #IPainLivingMagazine, ARMS member, #CureArthritis Crew Member for the Arthritis National Research Foundation, AIArthritis Rep, International Pain Foundation(#IPain) Patient Partner, @Clara_Health Breakthrough Crew Member, #Dazzle4Rare, Advocate,Wego Health Nominee in 2017 for best in show Facebook and Twitter and I am a Savvy Patient and member of the Savvy Cooperative  online.

* Disclaimer – This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding migraine and headache disease and all medical conditions.

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