Let me tell you a tiny story about Chronic Illness.
Last night was a typical night… I’d rested all day. No makeup, no clothes, just PJs and ice and heat and medicine. I fell asleep at 02:00 am. with my head wrapped in ice and 2 heating pads on my back and right hip. Mini coma ensued. I dreamt. I kept sleeping.
At 2:00 pm, I woke up. Detangled myself from heating pad cords, got to the restroom, and took my morning meds.
A 12 hour mini coma. Restful, right? Nope. I’m absolutely EXHAUSTED. My head has a mild migraine, my back is screaming. I slipped back into bed.
It’s now 5 pm, and here I lie. Changing my head wrap ice, laying on the heater, and binging Millionaire Matchup on Netflix. I’ve had some coffee and my medicine. I can’t face getting up to actually eat anything because I’m too tired.
How can anyone be tired after 12 hours of sleep? 🙋🏻♀️
And that, my friends, is Chronic Illness.
It controls my life, it is bigger than my life. It’s a huge monster, and I’m this tiny spark of a person living under its smothering layers and layers. It makes me very sad. Never in a million years could I have imagined this kind of existence. I had no idea it was a possibility. As they say: with Chronic Illness, you don’t get it until you get it.
Maybe I’ll be adventurous and actually get a small snack when I get some new head ice? Wish me luck!
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:
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!
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.
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-
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.❤️
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!
Botox Day is HERE! 🎄🎁💉 It’s here! It’s here! One of the 4 most happiest days of the year! Migraines have been an incredible battle the past several weeks R/T weather patterns. And we are supposed to get a nasty storm today… Next #BotoxforChronicMigraine is June!💉 The day of Botox is a sacred day. It isn’t particularly “painful,” but my body and soul feel “violated” by the 40+ tiny subcutaneous injections. So there is an exhaustion accompanied with the procedure… as well as a migraine triggered. When I first started botox over a decade ago, I had no problem going to work right after, or grocery shopping, or whatever. As I get further into my #ChronicMigraine and #ChronicIllness adventure, I seem to need the remainder of botox day for rest, recovery & low activity. It’s important to keep your head elevated and not to rub injection sites for several hours post procedure.👍🏼 The medication starts to work appropriately 5-10 days post injections.💉 My neuro and I plan to add oral Nurtec as a migraine prevention as soon as my insurance submits… this will be a long process of prior authorizations and one-on-one’s between my provider and insurance. Huzzah! Thankfully my neuro is dedicated. 💜❤💜 And I have duck boots now. My mom never got them for me when they were popular when I was a teen. So I’m hitting them up this time in the wonderful cyclical fashion wheel👢 #WaitingRoomShoePic
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.
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. 😒
mybeautifulmigraine 