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10 Years of Your Questions and Answers

Living with an invisible illness has many challenges. Along with feelings of anxiety, there are unspoken moments of helplessness and searching for the words to describe the pain that we are experiencing. For the past 10 years, our community members have found many ways to voice their feelings and experiences. Even during a dreaded attack, our members are there for each other. We want to thank you all for a decade of sharing questions, telling stories, and bringing relief, support, and reassurance to so many within the community!

The challenges of living with migraine

How long did it take you to receive your diagnosis? - Editorial Team
"I really don’t remember. On reflection, I realize I’ve had one form or another for most of my life. But around 20 years ago (I think), after around 3 or 4 weeks of almost unrelenting headaches and dizziness, I visited the GP who looked at me in great sympathy, held my hand and gently said, ‘you’re experiencing a prolonged migraine and medication overuse headache as well. This is what we’re going to do about it’. I cried." - Jojiieme

How has migraine impacted relationships in your life? - Editorial Team
"Chronic migraine (and related/comorbid illnesses) affect all of my relationships. It is sad. I used to be very outgoing, always busy, social, active in a variety of groups. Now I feel too ill to be social much of the time. This has affected family relationships, friendships, work, primary, long term, partnership, and the like. It is quite bewildering." - Bluesguy

Does anyone else wake up with migraine? - Litoria76
"90% of my migraines are there when I wake up. Very few happen midday or in the evening." - KLKH

The stigma of an invisible condition

Which part of your invisible condition of migraine do you wish people would see? - Joanna
"That even on a good day I’m in pain, and a bad day zaps every ounce of energy I have. My home isn’t a mess because I am lazy, it’s a mess because the energy it takes to maintain a home is zapped away by constant pain and postdrome." - Caitlyn

What has been your biggest struggle dealing with migraine as an invisible condition? - Joanna
"My biggest struggle is trying to work with having chronic migraines. I have my own business so it’s a very difficult choice to just close up shop when I’m sick. I don’t have any employees to cover for me. I am better at arming myself with meds and knowing when one is coming and when to take meds to cut it off at the pass. Other times, there is literally nothing I can to do help the pain and fatigue." - FlyDragonfly

How do you deal with ignorant people? - 42xsammi
"The more I’ve been willing to share about what I experience with my migraines, the more I’ve found other people whom I never knew suffered from migraines and I’ve educated others who don’t really understand what we go through. I call migraine a neurological condition – because that’s what it is – and let them know all the other things that go along with it, not just headache. In fact, headache is the least of my problems when I get a migraine as I have meds that work for the pain – it’s the rest of the stuff – vertigo, fatigue, confusion, aphasia, nausea, muscle weakness, hypersomnia, vision changes, nerve pain – that sucks." - Anne

The many symptoms of migraine

Do you have a hard time expressing your thoughts? - Daggs85
"This happens to me during and after a migraine. I just lose words entirely and end up describing things in weird, convoluted ways. I say “that thing that” a lot. But I don’t have a problem writing, just speaking. It’s really scary because it makes me wonder what the heck these migraines are doing to my brain? Am I going to end up with early-onset Alzheimer’s? It’s really frightening." - Headouchies

Is Visualizing Migraine When Your Eyes Are Closed Common? - Michael1984
"I am more likely to see aura activity with my eyes closed when trying to rest during the day or evening. That can be daily. I am used to a lot of weird stuff happening since having migraine at least 70 years. They have gone through many stages." - Luna

Does anyone else experience long term aura? - Mado
"Yes, I too have very chronic migraines and also have visual disturbance most of the time. Vertical and horizontal lines shimmering. I’ve also had some blurred vision – thought it was just me!" - Tsurvy

These questions were originally published on over the past 10 years. If you have additional questions, or you have more to say to the community, click on the link below to tell us more!

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