Posted on by MyBeautifulMigraine · 1 Comment

Where to START when your MIGRAINE becomes frequent

Migraine is nasty and cruel.

I had my first migraine at age 6 at a day camp and was episodic for many years. My mother actually diagnosed me – she was a migrainuer herself and saw all the symptoms I presented: sensitivity to light and sound, I was pale and sick and couldn’t move without terrible throbbing head pain. The day camp was very loud and crowded, and I was probably hungry and anxious. I became chronic about 10+ years ago in my 30’s and have done so much research and testing to become a Migraine Jedi.

The most critical part of migraine is preventing yourself from going chronic – the number one reason people become chronic is from inadequate migraine treatment. It’s shockingly simple. Inadequate migraine treatment.

The first and most important step I STRONGLY recommend is downloading a migraine app on your phone immediately. It allows you to track your migraines, their start/stop, weather info, food info, and most importantly, it can help identify your triggers. Avoiding migraine triggers is key. Also, a migraine app (such as Migraine Buddy) will be invaluable for you to share with your physician. Data data data! Incredibly powerful and helpful.


My triggers were hormones, stress, letdown AFTER stress, and any fluctuations in weather: barometric shifts, too much sun, too much wind, changes in pollen, changes in altitude, etc.
Once you’ve established data in your migraine app, the next huge component is PREVENTION. There are several simple things that have a lot of scientific data and are easy to implement. Of course, following a good meal and sleep schedule. But also: MAGNESIUM 400-500 mg daily (I recommend taking at nighttime because it can make you sleepy). Also, RIBOFLAVIN and CoQ10. Two herbs have good results, too: Feverfew and Butterbur.
Next, if those aren’t helpful enough (and often it’s not); it’s time to move to good medical care.
An excellent place to start is:


https://migraine.com/

But often, for young women, simply getting on birth control can make a major improvement if your migraines are related to hormones. It’s truly amazing.

Moving to medications: There are several first tier meds for migraine prevention: cardiac meds (atenolol, nadolol, propranolol, verapamil), antiseuzure meds (topamax, zonisimide), antidepression meds (amitriptyline). They’ve found that some of these meds work off-label for migraine prevention. But they are not necessarily the greatest. Some doctors will even skip them since there have been other better medications developed now.

Personally, I’ve found incredible help from Botox for Chronic Migraine. It’s been used with great success for over 20 years. It often takes a while for insurance approval. And you’ll need to allow 3 full treatments (9 months) to evaluate its helpfulness. I receive 30-40 subcutaneous injections immobilizing my muscles in my forehead, temples, occipitals, neck, traps, and jaw.

There are also a bunch of anti-CGRP meds that hit the market in 2018, and I’ve been able to test them. Some are once a month injectables like Aimovig, Ajovy, Emgality. There are migraineurs called “super responders,” who have been able to almost completely eliminate migraine from their life with these injectables. But personally, I’ve had the best luck with Nurtec (oral CGRP) taken every other day. CGRPs are also used as abortive meds. And I’m going to talk about them after prevention. Another important diagnostic for migraine is to make sure there is no anatomical reason for your increase in migraine. For me, my “cause” is hereditary. My mother, father, grandparents, and brother all got migraine. So it was no surprise that I suffered (although none of them became chronic). If there is no hereditary component and your migraines have started out of the blue, or you have a NEW migraine symptom: a full neuro workup is in order. An MRI with and without contrast and other tests, if deemed necessary.

Next step: ABORTIVES. This is critical. You’ll need to be able to treat your migraine appropriately and AGGRESSIVELY. A full glass of water or gatorade, ibuprofen 600-800mg and rest may be all you need. However, ALL medications have a possibility of causing MOH (medication overuse headache) or REBOUND. Even ibuprofen taken too often can cause MOH or rebound. So if youre having frequent migraine, you’re going to need other options to treat: the TRIPTANS, developed in the 1990s (imitrex, maxalt, zomig, frovo, and more – they can be administered orally, injection, nose spray and more). Also, CGRPs (Ubrevly – Serena Williams is spokeperson lol, Nurtec, Reyvow – these are orals). So, if you are chronic (15 or more migraine events per month x3 months), you’re going to need to circulate through these options to avoid MOH. Another secret weapon can be an antiemetic like phenergen – which not only helps with nausea and vomiting with migraine, but it also has some evidence of pain relief. Also, some doctors may prescribe a mild muscle relaxant such as tizanidine… which can help interrupt the clenching and tension involved with migraine – helping break the pain cycle.
Lastly, I need to address MOH, rebound, and status migrainosis… migraine events have 3-4 stages: 1) prodrome, 2) aura (only 1/3 of migraineurs have aura, I never have), 3) headache, and 4) postdrome.


Through intensive study, it’s been determined the time of a migraine stages 1-4 last 12-72 hours. IF YOUR MIGRAINE IS LASTING LONGER, it is probable you are in status migrainosis. This is NOT your fault. It happens. A lot. If you are in SM, it is important to involve and get treatment from your physician. Simple solutions to interrupting and ending SM are steroids: your doctor can prescribe a steroid dose pack. More intensive treatments are infusions: like magnesium, depakote, steroid, torodol (actually, these can be quite effective! And there are actually infusion centers located everywhere that offer IV drips – some for hangover lol, but they also have a “migraine cocktail”) Quite honestly, the worst option for SM is going to an ER or ED. They are just not equipped to deal with migraine… these retail drip centers are better!


https://driphydration.com/

But your physician can also order infusions (either in office or an infusion center) for you, which would be covered by insurance. Personally, I do very well with a steroid dose pack and then complete rest. Because TIME and switching to meds like phenergen (instead of pain meds and migraine meds – which I STOP taking altogether) is the most tried and true way to END a lengthy migraine event.

Lastly, I want to touch on non medicine migraine treatments! My freezer is FULL of icepacks! My favorite is the Headache Hat from Amazon.

http://Headache Hat™ GO- Multicolor Space Dye/Black https://a.co/d/2r2d61b

Wrapping my migraine head in ice is so helpful for me. Some people prefer heat. Some people use a chiropractor for adjustments. (They only cause me migraine) But I am helped by medical massage. Some people use accupunture. I didn’t have much success. Applying cranial pressure can help migraine as well – if a family member can help with that, that’s great!
https://www.verywellhealth.com/craniosacral-therapy-for-migraines-

There are also devices that are really incredible. I use Cefaly.
https://www.cefaly.com/

It’s like a tens unit for your head. Very safe and helpful. But it’s not cheap and not covered by insurance. Cefaly does have a money back guarantee, which is awesome. Another device I’ve tried is Relivion.
https://www.relivion.com/

Also expensive and not covered by insurance. Sigh. Another device with awesome data for episodic migraine improvement is Nerivio!
https://nerivio.com/

Basically, Migraine sucks sucks sucks. But there is SO much to do proactively and preventively to control the neurologic disorder. I have only touched the surface of information! 🙂


You will hear (from well-intentioned friends and family) about daith piercings, kale smoothies, CBD and essential oils, and other mystical “migraine cures,” which I don’t completely discount. But anything claiming a “cure” for a neurological disorder that HAS NO CURE… make sure to take that advice with a grain of salt.💜

Example of annoying and unhelpful migraine advice meme



Know one thing – the most important thing – YOU ARE NOT ALONE, and there is HELP out there and people who understand your struggle. Getting to know as much about your neurological disorder as possible is the BEST road to success. Episodic migraine is acceptable. Going chronic should be avoided at all costs.


Please please let me know how else I can help. Migraine Advocacy is one of my greatest life’s passions.❤️

#ChronicMigraine #ChronicMigraineAwareness

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Posted on by MyBeautifulMigraine

Holy Migraine… and Painsomnia!

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!

Posted on by MyBeautifulMigraine

Today I cried…

… because of pain.

My little Bonnie let’s me hold her ❤

Chronic illness and pain is stupid horrible. I don’t know why my RA is flaring… is it the change of weather? The tiny joints all through my hands and feet are screaming. My head has a frightful constant ache.

Today is a day to rip off the calendar, crumbled up and throw away. Ice on my head and heat on the back. I don’t have enough pain medications. Maybe I could take an epsom bath and just go to sleep…

This is what I normally look like…

I don’t want to do anything exciting like walk, shop or take a trip. With chronic illness, I just want to be able to clean my house, make a meal, feed my dogs and make my bed.

But I can’t get out of bed to make it. Bonnie licks the salty tears off my face.

Posted on by MyBeautifulMigraine

The DISSERVICE to Addiction

Addiction is real. A real mental disorder that deserves care and understanding and action. But this present US govt stance on Opiates (and growing number of other drug classss), is a terrible disservice done to Addiction, Tools of dealing with Pain, Chronic Pain – EVERYONE.

TWOLA, 4/22

Opiates and other medications are simply tools. They are not killers, they are not evil, and everyone reacts very differently to medications. Allowing our US legislators free reign to make laws regarding these tools, we invite individuals who know NOTHING about Healthcare our own individual health care into our chart, our PRIVATE lives. No no no no no!

I am not unsympathetic to human beings who have lost their lives to opiates – in whatever their capacity – illegal fentanyl, overdosing on prescriptions, etc. Every loss of life is tragic. There is a process where our country could be more careful with opiates. But it’s a no-go inserting government into a patient-doctor relationship. My doctor and I know the tools to care for my health. The US legislator does NOT.

To me, there is only a Libertarian POV for medical care. Not everyone is an Addict. The population should not be scared to death about treating temporary or chronic pain. Doctors’ licensing shouldn’t be threatened for good and appropriate healthcare. The government does not belong in between me and my physician.

I cannot wait for the pendulum to sway back to Sanity. Get the government OUT of my healthcare!

TWOLA, 4/22 There are SO many questions about this info blurb. “Opiates kill more than 136 Americans a day” – Suicide? Illegal opiates? Addiction? Accidental overdose? Poisoning?

Addiction is real. It is NOT the same thing as Dependence. Not everyone is even on the spectrum of Addiction potential! Treating a medication as an evil thing is just dumb; medication is a tool. And mistreating temporary and chronic pain inadequately because of a creation of an Opiate War is criminal. Advocate for genuine, positive, individual, wellness-oriented, collaborative patient healthcare.

#PatientsNotAddicts, #Chronicillness, #ChronicMigraine, #ChronicPain #CMAware, #SpeakYourMigraine, #opiatewar, #AddictionVSDependency, #waronopiates, #MedicineIsATool, #GovernmentOUTofmyHealthcare, #DoctorPatientHealthcare, #EndtheOpiateWar, #KeepIllegalFentanylOUT, #getoutofmyhealthcare, #Libertarian

Do I look sick? I am a Face of terrible & life-changing Chronic Illness 💜
Posted on by MyBeautifulMigraine

Sound of Silence

Haven’t really blogged in awhile. I have so many ideas for pointless storeytelling posts. And maybe someday I’ll get them to print.  Once… not too long ago, I fancied myself an #AuthortAt49. As my present age of forty-nine is nearly sunsetted, it’s a fact that I’ve done the leanest writing in my life.

The amount of #sucking I exude… emanate… radiate… is dangerously toxic. Run away. RUN. AWAY. Far away. Run fast. If you come into contact with me for more than 15 min, take a hot shower and scrub with lye.

There’s a song for that:

With a taste of your lips, I’m on a ride

You’re toxic, I’m slippin’ under

With a taste of a poison paradise

I’m addicted to you

Don’t you know that you’re toxic?

And I love what you do

Don’t you know that you’re toxic?

It’s Britney, britch..

So why the Diva Donna Sound of Silence? Too much to write about… ✔ plenty of time to write….✔complete lack of motivation… ✔ unsual, nonstop, under-controlled PAIN and symptoms… ✔

10 min mailpod trip today = 25 spoons, capital I do not have

I spend normal waking hours professional TV watching. And literally writhing in pain in bed, doing the RA Weird Bed Stretch, sleeping ungodly amounts of time. Tears… and more tears. Drip💧 drip💧 drip💧

I’m just BARELY existing. Have been coughing from allergies since November (inhaler, nose sprays for treatment). Bizarre sky high BP for a couple months (~150/95)

My doc and I have decided on some changes- including switching from Loratidine D to just Loratidine.

It’s pretty obvious I will have to go on a cardiac BP migraine prevention med again – I was on Nadolol for years for migraine prevention. It never did shit for migraine but I wasn’t hypertensive then. And now my migraine clusters feel very related to my high BP. And I cough with allergies… and crap, my head explodes with pain with each cough💥 cough💥 cough💥

Please no more. The tears start and they don’t stop. I’m crying and crying.

Marc and I quibble and argue about stupid stuff. It’s the same circular train. 1) “Money is tight,” states Marc. Translation: Donna, you literally contribute NOTHING to the marriage & our children’s lives. You’re worth more dead than alive. Strangely and for no reason that I can connect, this conversation and translation leads me to become silent and distant. Kind of like I want to walk off the nearest 55 foot cliff to my death. The next part of the part of Marc’s conversation is, 2) “Can we never TALK about this without you getting upset?” Marc bewildering asks. Not a prob; let’s just get passed the next sentences of me being a big fat burden so we can talk more about not spending money. Which I think we already discussed? Because this is a conversation we’ve had for the last 22 years. And, frankly, it’s BORING. It’s tiresome. And the same exact conversation. And round and round the train goes…

Blah blah blah blabla blah blah

Don’t mind me… I’m just existing in bed 23 hours a day. Vegetation grows inside me, replacing my vital organs… vegetation alongside me, roots form and burrow underneath me, replacing my veins and growing into the mattress, my wings are broken, they are ripped out of their sockets and hacked to bloody stumps. I am a plant stuck. Joy is waning, Joy is untouchable.

As I’m existing here… I lay on my right side… head propped on soft pillows, slice of pain starts at the top of my right head and travels down to my ear. There is a flowering of some beautiful pain in my right temple. My hands hurt… it’s like on a cellular level… the cells of my hands and fingers hurt. How dumb is that? The same cellular pain is in my feet… their joints, and muscle tissue. If I keep them still, maybe I’ll notice it less. The pain up my right thigh and lower back is different and more intense. But overall, there is this covering… like a web or large linen cloth – it envelopes my entire non-ethereal person. It is so present… it reminds me I cannot move… I cannot breathe… there is no me, only a linen sack of body. The tears drip out of my non-ethereal eyes. Drip💧 drip💧 drip💧 Flow. They’ll never stop. All Joy is gone. I’m alone in The Dark Hole. People I loved have left me, turned their backs on me. I can scroll my contact list and it is full of strangers and people I only used to know.

At present, Ukraine is being bombed to rubble. One day Ukraine is wining the war, the next day Russia is. My fav journalist Ben Hall has lost limbs but is alive. Biden says you can’t buy a cannon. Kamala is under the spell of the Significance of the Passage of Time. Boris Johnson (PM UK) toured Kiev with Volodymyr Zelenskyy (Pres Ukraine). Optically, it looked majestic. My dearest niece in law (42) just lost her little bean baby… an IVF baby 11 weeks whose heart stopped beating. Her D&E was Sunday. Courtney rolled her ankle and is in a boot for weeks. I don’t know if Corey is ok. I don’t know if Nick is ok. Robyn seems ok. She broke up with her new boyfriend a couple of days ago and is sad. Courtney’s bestie broke with her BF after 7.5 years, and she is hurting. Sue sends Dave letters showing she is still firmly chaining herself to her personal constructed Hell Loop, and I can’t even imagine the PAIN she is creating for herself. She holds the key to her release but won’t release herself. Eric Adams (mayor NYC) has pulled down the mask mandates EXCEPT for children 2-4 years old. Those babies may not even be potty trained (and certainly they are NOT spreading covid), but they must wear a face mask. I can get another covid vax booster, but I don’t WANT the SAME vax – I want one with updated strains, for crissake. In Florida, insane people don’t want a law passed that doesn’t allow sexual/gender discussion in K-3rd grade. Disney is at war with Ron DeSantis. There’s been a terrible shooting in NYC subway – shooter is not caught yet. China is shutting down for a new strain of covid… yet there has been one death. The world is in ruins. Like the rubble and ruins of Ukraine. There is no Joy. There is only great Sadness. I’m losing friends… I have nothing to give…. my circle of Life closes in, and I’m fashioning myself a Recluse. I used to always be sure in the bond with my husband. Just a few days ago, we were holding each other. And now…

There’s a little black spot on the sun today (That’s my soul up there)
It’s the same old thing as yesterday … I have stood here before inside the pouring rain,
With the world turning circles running ’round my brain,
I guess I’m always hoping that you’ll end this reign,
But it’s my destiny to be the king of pain.

#ChronicMigraine #InvisibleIllness #Chronicillness #Depression #QueenofPain

Posted on by MyBeautifulMigraine

Don’t get Chronic Migraine

Oh myyyyyy

Don’t get #ChronicMigraine.

It’s so dumb and wastes a ridiculous amount of time and energy. The shadow that slips into your life with intent to take over everything.

If #Migraine is something you experience, take it seriously… get proactive! Track it, find your triggers, communicate with your health care provider. It’s not all about pharmacology – there are simple life changes, vitamins, minerals and herbs that can make a serious difference.

However, when Migraine episode strikes, don’t “chase it” or “push through.” SLAM IT with appropriate medication and treatment. Improper and inadequate migraine treatment is the root of Chronic Migraine.


#MigraineAwareness djk #MyBeautifulMigraine #SpeakYourMigraine #PatientsNotAddicts #InvisibleIllness #Chronicillness

Posted on by MyBeautifulMigraine

Why Some CGRPs Work When Others Don’t | Migraine.com

By now, most people in the migraine community have heard of, if not tried, the CGRPs – a new approach in the prevention and treatment of migraine. After a bit of a drought in the development of effective medications for this prevalent condition, many migraineurs were lined up and chomping at the bit to see what all the hubbub was about. And there was quite a lot of buzz about this new treatment. The positive results from the trials were rumored to be significant and potentially life-changing.

A recurring question about CGRPs

It’s now been two years since the three variations of the CGRPs were introduced (Aimovig, Ajovy, and Emgality) and beyond the troubling stumbling block related to its high expense, one major question seems to keep reemerging: “Why does this treatment work so well for some and not others?”

CGRPs don’t work for everyone

Why not me? With hopes raised high by the success stories of others, many of our community members expressed disappointment after trying one of the CGRPs to no avail. Such a normal response to be let down after hearing about the dramatic improvement of others when you don’t achieve a similar outcome.

If at first you don’t succeed, try, try again. However, we have learned that not all CGRPs operate in the same way. So, if one of the three CGRPs is ineffective, it doesn’t necessarily mean that another will not work.

One size does not fit all with migraine

Of course, there’s also the potential outcome that none of the CGRP treatments will work for you. Or that, rather than stopping your attacks dramatically and entirely, this treatment may improve your condition just slightly. Migraine works so differently in all of us so that what is an effective strategy for one person can be completely ineffective for another.

A multipronged approach to migraine treatment

For most migraineurs, there is no such thing as a simple cure or easy fix. Rather, the most effective strategy is a multipronged one, involving multiple approaches which include various medications and countless life alterations (diet, sleep, and exercise) that, coupled together with time, effort, energy, and lots of patience, will result in a gradual improvement in this complex neurological condition that is migraine.

https://migraine.com/living-migraine/some-cgrps-work-others-dont

I wish the CGRPs had been the magic cure for me – I trialed Aimovig and Emgality before my insurance made me choose between CGRP or Botox. The CGRP migraine abortive Ubrevly has been quite helpful during attacks – about as reliable as triptans. But none of the preventative monthly injections worked. 😒

Posted on by MyBeautifulMigraine

Sometimes I Just Don’t Feel Well, and I Don’t Know Why | Migraine.com

This is the most EXHAUSTING and FRUSTRATING part of Chronic Life. It started for me in 2010, I’d get to work and would be sleepwalking from 8 am until at least 12 noon. It was like the flu without fever and respiratory problems – just incredible achiness and complete exhaustion. Baffling, I researched and grilled my medical team. No answers. I’m almost 100% sure it’s related to Rheumatoid Arthritis and post/prodrome.

The most upsetting part is when I finally have a break from migraine, I want to do do do! But my body is made of concrete and I’m trying to move through quicksand.

https://migraine.com/living-migraine/just-dont-feel-well?fbclid=IwAR2h_UR6CI4D66ZqtMuJOTqvOtyorAaOdpm5Qjq4t5uR_4yGjEUmlSq3q6Q&utm_campaign=Migraine&utm_confid=sovh175sq&utm_medium=promoted&utm_source=facebook.com