What’s worse than #ChronicMigraine? …when, despite treatments & medicines & rest & planning, I simply can NOT “power through” and do something I really, really, really want to. I simply can NOT get out of bed, not even crawl to an event I committed to & was looking forward to. I am just so sorry… and just so sad. All I do is let people down. Why would anyone want to be friends with someone so unreliable, sick, and …absent? It is terribly embarrassing and isolating. It’s just a shadow of a life. I am just so sad. So sad …and so sorry.
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.
My first neurologist “discharged” me from care: “There’s nothing more I can do for you.” That was over 16 years ago, and I’ve never really recovered from the trauma. Since then, I’ve had a string of great doctors.
Dr. Jeanette Wendt, MD in Tucson AZ. I met with her a few times. Followed her advice and took the prescriptions she ordered. When I didn’t improve, she said she was discharging me from her care, and she couldn’t help me anymore. I was shocked. I was defeated. I was so sad. And I blamed myself for a terrible doctor and her inadequate care.
Since then, I’ve gone on to many wonderful doctors who’ve told me: “We will continue to work together,” “You’re going to get better,” and “We won’t give up hope.” In the back of my mind, I always carry that fear, that trauma of being rejected. I’m an active part of my healthcare and constantly open to trying new treatments and continuing the treatments and medicines that are helping me with Chronic Migraine.
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!
Today, the sun came out after storms last night and this morning. I’m in pain, but I’m breathing, I have a heartbeat, and I WILL smile. I’m thinking of my wonderful husband, amazing 4 kids, beloved daughter-in-law, and one New Thought of God grandbaby on the way…
I’m in pain, but my botox is in my head muscles and while it will take 2 weeks to work, I’m optimistic… very optimistic.
Well wishes to ALL!
Get along, on down the road, We’ve got a long, long way to go. Scared to live, scared to die, We ain’t perfect, but we try. Get along while we can, Always give love the upper hand. Paint a wall, learn to dance, Call your mom, buy a boat, Drink a beer, sing a song, Make a friend, can’t we all get along?
The botox had not arrived from my insurance’s specialty pharmacy. I went to the office anyway. Marc came with. I said I could lie down in the waiting room and wait for its arrival, but I couldn’t take anymore. I’m 37 days late on treatment. I don’t eat much; I’ll just camp out here.⛺️ I cried when Dr Polkala and Cammy took me back and injected me with samples of the office’s botox. God bless them. We are on our way home and I’ll climb back into bed w ice. I just have to wait for the botox to start working and climb back on the hill of treating #ChronicMigraine
#WaitingRoomShoePic #BOTOXforChronicMigraine
Thank you all for your encouragement, support and prayers.💜❤️
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?
Called insurance on my own😭 Spoke with specialty pharmacy twice😭 Went on to spend one hour on conference call with Neuro Botox coordinator and insurance specialty pharmacy… it should be soon. I was weeping for most of the call😭 I appreciate ALL the helpful messages and prayers. I will make it through this… 80% sure. They will fit me in early next week. If there was ever a test to see if #BOTOXforChronicMigraine is important for my #ChronicMigraine treatment, I’ve passed. I don’t want to die. I just want to LIVE😭
mybeautifulmigraine 