Posted on by MyBeautifulMigraine

Cefaly… a powerful tool for Chronic Migraine

I don’t know what I’d do without my Cefaly @cefaly_official … it makes life with #ChronicMigraine more manageable. It’s hard for some people to understand that Chronic Migraine is more than just a headache… it is a genetic neurological disorder… the neurological storm🌩 I’m determined to smile through.

I may bend, I may cry, I may spend many, many, many hours alone in my bed, and every cell in my body may scream in pain, but I will not break. I grow.🌳 I thrive.🧘🏻‍♀️ I love with all my heart & soul.💓

We’ve just returned from a visit to the North East to visit family. Cefaly was with me every day. There were days during our 9 day visit when I felt I couldn’t get out of bed or follow through with plans. However, an hour break with Cefaly and a lay down, and I could rise. I also kept my unit accessible during the drive: 2 days about 12 hours a day to and from… Cefaly helped when medicines could not fix it all.

Cefaly is not inexpensive. But I’ve saved for it, turned in older units for discount, and used coupons. It’s a one-time cost with only electrodes needing replacement. It provides an intense “electrical feel” stimulation to the trigeminal nerve, and I can feel the sensation moving up my head and down my face and nose. It helps me relax, it counters the pain, and it helps my medication work better. One round of treatment lasts approximately one hour. Sometimes, I do 2 treatments at a time.

People with migraine have hypersensitive nervous systems that over-react to stimuli, causing pain and neurological dysfunction. The trigeminal nerve- a multi- branched nerve in the head and face -is the major conductor of migraine pain.

From: Cefaly.com

During this Migraine Awareness Month of June, I am acutely aware of all the tools I need and use to manage my disorder these last 17 years of diagnosis.

It’s a filter; I’m not that pretty.

My prayers & thoughts are with you all.

#ChronicMigraineAwareness #MigraineAwarenessmonth #cefaly #cefalyselfie #Chronicillness

Posted on by MyBeautifulMigraine

Botox for Chronic Migraine

It’s a story from 6 years ago…

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.

Posted on by MyBeautifulMigraine

The trauma of a bad doctor

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.

Posted on by MyBeautifulMigraine

Botox FUBAR

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.💜❤️

Posted on by MyBeautifulMigraine

No botox

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.

Posted on by MyBeautifulMigraine

The science of GREEN LIGHT

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

https://allaylamp.com/

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.

Posted on by MyBeautifulMigraine

The COST of Migraine

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?

Posted on by MyBeautifulMigraine

When your #BOTOXforChronicMigraine is so late, you’re dying

I might just die here in this bed. Or run into traffic. It doesn’t feel fair. I don’t want to die. I want to LIVE.😢

My neurologist of 10 years
retired in March. I started
with a new, very wonderful
neurologist right away.
I’ve been in treatment with
BOTOX for Chronic Migraine
for almost 15 years and was
due for botox on 5/18…
The new neuro has been working
with my insurance to approve my
treatments, and I’m still waiting.
I feel like death every single day. I don’t know how much longer
I can wait. Speaking with my insurance and specialty pharmacy
just gets me nowhere. Have sent an sos message to my new
doctor. Why does this have to be so difficult?

#ChronicMigraine #InvisibleIllness #BOTOXforChronicMigraine
#MigraineAwarenessMonth

Posted on by MyBeautifulMigraine

Migraine Awareness Month 2023

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.

Posted on by MyBeautifulMigraine

Chronic Illness Truth

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!?”


#ChronicMigraine #ChronicIllness #InvisibleIllness #CMAware #ChronicMigraineAwareness #RA #ChronicPain