Every single year… it never fails: major migraine for Independence Day. I don’t know if it’s the heat or allergies, or whatever… a massive migraine for the holiday.
I usually push through until I can’t anymore. For instance, I’ll make it to the family party, but stay home while the rest of the family joins in neighborhood fireworks.
It works. It’s disappointing, but it works. Because my family has a good time while I work with my dumb head.
This was one particularly terrible Fourth of July migraine in ~2014. I was clinging to my Marc at the holiday pool party. My migraine was so severe, I was was firework-ing in my brain and nauseated beyond belief.
So it was a great surprise that this Fourth, I woke without horrendous head pain!
Marc and I leisurely got ready to attend a neighborhood celebration. We were so looking forward to seeing and celebrating with dear friends.
As the hours passed, I continued to marvel at the state of my low/no migraine. Where was she hiding?
We arrived at the celebration at about 4. And still was nearly migraine-free. We so enjoyed the party; I only had 2 glasses of wine – because I wanted to play it safe! And I had so much fun connecting with and enjoying sharing with friends!
I am so blessed with amazing neighbor friends who understand my health issues – and they seem to like me anyway! How do I know this? Because they continue to invite us to their parties – even though I sometimes can not attend due to migraine.
We stayed a few hours and got home in time to enjoy the neighborhood fireworks from our back porch.
And there is was! A true WIN! And we went to sleep after a very, very nice holiday! #winning and #grateful!
My Botox for migraine prevention is in T minus 5 days. The last 2-4 weeks before the next procedure of 36 injections to the forehead, sides and back of head, jaw, and neck are usually quite difficult. My “juice” runs out. Botox is the best preventative I have ever used for migraines. It decreases the severity and length of my migraines and makes my medications work better. It does not magically cure me by any means. I never miss Botox day. Ever. I never reschedule it. Ever. I’m never late. It is one of the most important 4 days for me of every year.
Insurance will only cover the procedure every 12 weeks. Perhaps someday a migraineur may be permitted more frequent injections, but that day is not here yet. The procedure is not performed by a plastic surgeon – instead, it’s done by a neurologist or migraine specialist, and it doesn’t help with wrinkles. Some “rounds” work better than others. I prefer the fact that Botox is injected into the muscle, unlike oral preventative medication that requires your body and organs to metabolize. Also, oral preventative medication is laced with unpleasant side effects (weight gain, cognitive problems, numbness in extremities, unstable moods, unpleasant taste in the mouth – to name just a few). Chronic Migraineurs are the only people I know who greatly look forward to multiple head injections…we are desperate for relief. For those of us who benefit and are in the Botox regimen, our injection day is a SACRED day. It’s our Christmas morning. I have been receiving Botox for migraines for over 6 years now. It is not the first line of approach for Chronic Migraines (defined as 15 or more migraines a month for over 3 months)… Because of its expense, oral preventative medications are always attempted first. If they fail for the individual, a neurologist will attempt to get insurance approval for Botox for their patient.
You know those migraines that remind you that you’re truly a migraineur? Like, all along you’ve been getting regular migraines and suddenly a whopper imbeds itself in your brain? And you have a sudden realization: Damn, Batman, I really am a Chronic Migraineur!
Today’s has been swinging with a gut punch all the day long: I woke at about 11 am with her. She’s taken state in my right frontal lobe – deep. I’ve had a myriad of well-wishes: Is your botox working yet? (Administered 5 days ago, 37 days late of treatment date). And it makes me feel awfully sad to answer honestly: Thank you so much for asking, but, nah, my head is just a bear and botox normally takes a week or two to “kick in,” and I’m so late on treatment that I don’t anticipate I’ll get the same kind of response as usual… botox is cumulative; I’ve got to get into normal on-time treatment, so I anticipate I won’t see real relief until closer to my next treatment in September, God willing. It is genuinely touching that so many people have followed my trials and followed my advocacy. So very heartwarming. The world is full of good people and kind souls.
I stayed in bed today. I changed my head ice wraps every hour. I rotated my medications, but did not overload. I found the most relief with that one med we Chronic Cats are not supposed to use anymore due to high incidence of possibly causing rebound migraine.
But darn it all, if Fioricet isn’t the most reliable medication! I can count on it, working almost 90% of the time! Maxalt works about 55%, Ubrevly about 60%, Reyvow (still assessing this one since I haven’t used it that long), about 60%.
When I had some relief, I was able to work on baby shower plans, help my husband with honey-do items, and cut his hair! Saucy!
Today’s migraine has been brought to me by extreme weather heat, allergies, and a fun 1.5 hour dinner last night with friends in a restaurant! My husband and I are working intentionally to foster our relationships with dear friends: not only are our friendships too precious not to nurture, but it gives me the amazing treat of dressing up like a human being, relishing our Empty Nest phase, socializing and enjoying a nice meal – the leftovers I can eat for days! Such a major WIN for a Chronic!
I also had most of a gorgeous frozen strawberry margarita – and alcohol certainly makes my migraine events worse.
So now… it’s 4 am and I cannot sleep due to Painsomnia… I’ve taken appropriate medication, have my green light on, and I’ve fired up the Cefaly. Hoping this will put me to sleep… healing sleep.
And I will probably over sleep tomorrow. My husband will wake up at 8, feed the dogs, make coffee, get ready, and give my head a tiny kiss before he heads out to a day in the office for work. I’ll find a cool cup of coffee on my night table when I finally open my eyes and rub away sleep. He is truly the best!
Will I wake up without migraine tomorrow at about 11 am? Will I be able to get dressed and made up while enjoying my favorite podcast? Will I be able to work my biz a little? Work on the baby shower a little? Clean the house a little? Oh what a glorious accomplishment that would be!!!😍 With or without migraine, that would be glorious to have the energy to be that productive!
I’m going to sign off and try to sleep with my zinging and intensly tingling Cefaly and try to sleep now! The TV is on with only the faintest white background noise, and a #BOTOXforChronicMigraine commercial was just played. Oh, the very ironic anecdotes of my Chronic Life!
Peace and love to all who struggle daily! Keep fighting for a Life to Live!
I am 33 days late on my botox treatment… I’ve never been so late in my 12+ years of #BOTOXforChronicMigraine treatment.
Just heard from the botox coordinator that my shipment did not arrive at the office today for my scheduled appointment for tomorrow.
If I could lay down and die right now, I would. I can’t understand how this is happening to me. I know this will all be a page in my history someday, but it doesn’t seem half fair. I can’t see through surviving this trial. They have broken me.
Today is another horrid migraine day. I think I’m in prodrome… the exhaustion is thick. I describe it as being made of concrete and moving through cement.
Rose this AM to quickly celebrate Father’s Day. So nice. My husband Marc is the BEST DAD in the world to our children.
Then I went back to bed. With my GREEN LIGHT.💚
“Greenie” sits next to “Salty,” my Himalayan salt lamp on my night table. Himalayan salt is supposed to help migraine as well.
Green Light has some research to show that it really helps with migraine… specifically @allaylamp
I couldn’t afford one of Allay lamps. They used my photos at Retreat Migraine but would not offer me a coupon. Lol! So, my loving husband bought me an affordable dupe from Amazon for my birthday a couple of months ago.
Another day… migraine has taken off my big calendar of Life and thrown in the trashcan.
I also really like my GREEN sunglasses from Zenni… I think these help with migraine as well.
I rested several days for yesterday; I was so excited to LIVE. I took a Reyvow Thurs night and woke up OKAY on Fri morning at 8 AM! Drove to my daughter-in-law’s to float the San Marcos with her and her friend. It was absolutely sublime!
After, I made it home to quick shower off turtle river smell and dress for dinner with our good friends Meg & Albert at Ling Wu.
We had drinks and AMAZING cuisine and wonderful togetherness.
When Marc and I arrived home, it was time to start treatment for the migraine that would come.
Today I woke at 9:30. It’s 1 PM now, I’m medicated, have ice on my head, and heat on my sciatica/back. I will not be moving from this bed.
…and it got me thinking about the COST of Chronic Migraine… do people understand the COST?
Episodic Migraine is common. Most people have, or have had, or know someone with MIGRAINE. But why do some migraineurs become CHRONIC (15 or more migraines a month for 3 or more months)? Often, this is a consequence of inadequate migraine treatment. It is crucial to manage this neurological event PROACTIVELY & AGGRESSIVELY. It’s important to medicate appropriately at the START of the event. Waiting is not recommended. If your migraines have a new and unusual symptom, following up with your medical provider is critical. Migraine is most frequently a hereditary ailment, often starting in childhood or puberty. But, if you have no hereditary factor, a full workup is in order – you could have an anatomical abnormality.
Truth is humbling and embarrassing. You get it when you *get it.*
I remember in my later 30’s when I felt my normal life slipping away, a Saturday where I suddenly could not complete my weekend to do list – collapsing in bed face first I wailed dramatically to my Marc: “What is happening to me!?”
Moms of Littles, you’re so busy right now: cheer practice, birthdays, sports, school projects, kinder orientation, holidays, playdates, bus schedules, quick dinners… to say nothing of your jobs and careers outside the home.
You look at older moms with wrinkles and kids in college, and you think: ‘that is soooo far off!’ I’ll think about that another day. As I did once… a decade ago. I remember vaguely… something about older children: “bigger kids, bigger problems,” sadness about kids going off to college, and more.
But at that time, I was closer to college myself than having a college-aged child! And I was so busy! My mother tells the story over and again: “I was so busy with children that the end of the day would come and I realized I hadn’t eaten anything!” Omg, I’ve heard that tired and dumb story SO many times.🙄 Well I had lots of children myself, and somehow whether it was the leftovers off their plates or granola bars in my purse, I never forgot to eat!🙄 But maybe mommy-ing in the 1970s was different than the 2000s?
The years have flown. I have more grays in my head and annoying, determined creases all around and under my eyes. Weight seems permanently affixed to my abdomen and I’ve removed my uterus as it was falling out of my body after many pregnancies and 40+ years.
The days are long, but the years are short.
Gretchen Rubin
My babies are all adults. They barely need us. They are studying for careers or working and married, starting families of their own. I post simple Facebook posts about their comings and goings and how much it means to this old mum.
And I pray they are okay. My prayers are general: for their safety, happiness, self esteem, good life choices. That they find life connections of love and support. That they know their parents and family is always a harbor of safety in a tumultuous sea of Life. Here is safety, and unconditional Love. They do not have to be anyone but themselves in this Home.
Moms of Littles, you will find yourself in this older mom role someday… will you remember someone, somewhere mentioning what it was like. 🥰
Truth is humbling and embarrassing. You get it when you *get it.*
I remember in my later 30’s when I felt my normal life slipping away, a Saturday where I suddenly could not complete my weekend to do list – collapsing in bed face first I wailed dramatically to my Marc: “What is happening to me!?”
Piercings with my girls today! I love a piercing to represent each year I have been chronic… my little way of making an Invisible Illness, visible.
mybeautifulmigraine 