I wish that more people knew the pain from migraine can vary from migraine to migraine and within a single migraine there can be pain-free times. For instance, I had a great deal of pain with this migraine last night and was able to knock down most of it. But upon waking this morning, I still feel the effects of the migraine like nausea, forgetfulness, shakiness, general weakness and there is a shadow of pain indicating that this migraine wants to blossom again. To outsiders, I would look fine, as I would be able to carry on small conversation and they would attribute the aphasia to natural lost words. It is warm and smoky outside from brush fires and I am stuck indoors due to that. If someone came to my home, I could entertain them in my living room nearly like normal. Once they suggested going out, I would have to decline. They wouldn’t understand. Most days, migraine avoidance is a conscious effort on my part and just because I don’t speak of it doesn’t mean it isn’t a factor in all my decisions.
As far as getting others to understand, well….that depends on the individual. My husband has seen me at my worst, taking me to the ER. He doesn’t want to see me like that again and so when I tell him why I can’t do something, he listens. He’s about the only one. My brother is more understanding because he has health issues that limit what he is able to do now and is going thru similar educational moments with his wife and daughter. It’s hard for people outside your body to see that you are doing the best you can.
The type of pain I experience is typically a right temporal throbbing that can extend toward the crown of my head. Typically. Sometimes I will get a left-side, sometimes my entire head. Those usually tend to be worse – ER worthy. And there are so many tiny symptoms and larger symptoms that I have spend 40 years of my life figuring out. It didn’t even occur to me until a few years ago that the ‘sinus headaches’ I had as a child were in fact migraines. Symptoms besides the ‘kill me now, please’ pain in my head are wide-ranging: anxiety, aphasia, ringing in my ears, vertigo, nausea, light sensitivity, heat and cold sensitivity, scent intolerance, diarrhea and vomiting during intense stages, weakness, cold sweats, shivering, insomnia, loss of comprehension, a feeling of isolation. So many more. And migraines over a few days can trigger a depressive episode. Conversely, the depressive episode can spin off more migraines and you are caught in a feedback loop.
Coping takes a lot of effort behind the scenes. I use Relpax for the pain along with Aleve to prevent a rebound. I control all cleaning and scented products that come in our house and avoid scent as much as possible when in public since fragrance will trigger a migraine in me faster than any other trigger. I avoid heat and always wear sunglasses outside during the day. I have to wear a hat or cover my right temple with my gloved or scarf-covered hand if it is cold outside. I hold my breath when I pass stores that have scent or smokers outside. I don’t go to concerts without earplugs, sunglasses and water smuggled somehow to take pills when needed. I will even tuck a cloth in my purse to cover my mouth and nose since the time I had to leave a George Winston concert because the lady in front of me had a lot of hairspray. I make sure I get plenty of rest and hydrate, hydrate, hydrate. The one I disliked doing the most was quitting my job. There are far too many variables in an office and I was experiencing very painful daily migraines. Just quitting my job saves us thousands per year on doctors visits and prescriptions. I also cook most of our food from whole foods to avoid additives that are triggers. Travel is difficult. It involves making sure rooms are fragrance and smoke free and I take a small cooler full of cold packs and water in case I get a migraine on the road. If I fly or change elevations, I’m getting a migraine without question, so having the cold packs is a must. I’m sure I’m missing some things – there are too many things that have become second nature avoidances to where I don’t realize I’m doing them.
Wow, your story is very similar to mine. I’m not as sensitive to smell as you. I only eat food that is preservative free. There are few restaurants that I can safely eat at. The choice between being hungry, or eating, when you know you will suffer if you eat , is awful.