At my last botox appointment, my Neuro asked me about my chronic migraine status. Sometimes keeping track of Chronic Migraine can be so completely depressing, so I admit I’ve slacked off on my tracker phone apps. But I thought a bit about my recent experiences before answering the question… I realized that while I have migraine symptoms every single day (🙄 of course… photophobia, lethargy, pain, phonophobia, brain fog, and so much more), I really only have about 2 migraine episodes a week that last approximately ~24 hours with treatment. This is an exceptional improvement, for sure. And I truly am grateful 🙌🏼
This solid progress is is a result of my Chronic Migraine regimen right now: •Botox every 12 weeks, •Nurtec (as a preventive) every other morning, •Nadolol 10mg and Tizanidine 4mg every night. For abortive treatment, I still have a plethora to cycle: Reyvow, Maxalt, Ubrelvy, Butalbitol, Sumatriptan injection, Phenergen, Indomethacin.
However, some very SAD news in my migraine world: Reyvow is being pulled because it isn’t making enough money for the company. I’m so unhappy: I really, really like Reyvow for those particularly bad or nighttime migraines… so I’m trying to fill my script as much as possible before the medication sunsets forever.
Discontinuation of Reyvow® (lasmiditan) for Acute Migraine Treatment: What To Do Next – Association of Migraine Disorders https://share.google/RrDGctNMDlPP7hmX0
While I was thrilled to acknowledge this solid Migraine win, my buddies Rheumatoid Arthritis and Sacroiliac Joint Dysfunction still are a huge part of my Chronic Illness daily life. And they never let me forget it!
Love you all… Warriors: keep up the fight!💪🏼💜
My grandbaby time; I LIVE for it! Daisy is almost 3 months, Theo is almost 2.5 yrs. 🩵🩷 GiGi life is the absolute BEST!💖
Still overwhelmed trying to work my biz… but it’s amazing for feeding my soul to serve women, flexibility and honoring friendships.
Cefaly FTW! – use at least 1-3x a month.Me at cabi Spring 26 Fashion Week in between sessions… This is how – spend most of my life😂 REST is ESSENTIAL; it isn’t the same as lazy.MY sweetest and most reliable supporter, Mr Kobo. He is everything ❤️ I haven’t been able to exercise in ages, but I’m actually BIKING now! Our kids got us ebikes for Christmas and we LOVE it!!!🚲
Of course as I type this, I’m quite sick with a head cold. It’s not the flu, it’s not very serious, but having “just a cold” while battling Chronic Illness and a compromised immune system is the ultimate injustice! I’ve been incapacitated the last 5 days and hope tomorrow is a better day!😊
I was wondering why I was migraine-ing all the damn day. Hello, pretty sky. Hello, rain. Hello, Migraine, my old friend. I’ve come to talk with you again, Because a vision softly creeping.
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!
There are moments in my life when regular people have done extraordinary acts for me. And I don’t believe these everyday angels have any idea how they’ve blessed me.
The day Dawn was an angel.
Dawn is my age and the owner of a home cleaning team that helped me out once a month. Dawn is a special person; she works so hard at her company and struggles daily with her own health autoimmune conditions. It was a time of my life when I was realizing raising 4 young children, working part-time as an RN, and starting to understand that my migraine disease was now becoming chronic. I had been cleaning my own house, trying to juggle life and dancing as fast as I could… I fell ill with a horrendous case of Shingles that crossed 8 dermatomes on my left side. I have always said that Shingles illness was a message from God Himself ordered me I needed help; I could not do it all alone, and I needed to hire cleaning help. When the cleaning team arrived once a month, I would scurry like a mad woman the night before trying to tidy up so the cleaning team could actually clean the house the following day. Most busy moms know what I’m talking about. The precleaning cleaning for the cleaners!
Anyway, when the cleaning team arrived, I would always take the opportunity to do the laundry while the team scrubbed and made the house shine. I felt like I could at least look busy while they did all the tough work. And oi, with 4 kids and a husband, I had a LOT of laundry. About 5-6 large loads would end up piled high on the living room couch, and I would fold fold fold and place in towering piles. Usually, the cleaning team was done WAY before I was done with all the laundry!
There was one day in particular that always sticks in my mind: I was trying to do all the laundry while the cleaning team worked, but I had a blinding disabling migraine. I just could not function even though I desperately wanted to look productive and be productive alongside my wonderful cleaners. But it was just too much. I caught Dawn on the side and told her: “Dawn, I am so sorry, but I have to go to bed… this migraine is absolutely debilitating. I am so sorry.”
Her face and response were complete understanding: “Of course! Go to bed! We’ve got this!” And I left their payment check on the counter and went to bed, wrapping my head in ice.
The cleaning team continued to clean around me… the upstairs bedrooms, the kitchen, the living/dining room, dusting, vacuuming, the master bathroom, the master bedroom, and all the floors.
They were done in a couple of hours. Dawn tiptoed into my bedroom, where I was under the covers incapacitated. She lovingly and softly touched my hand and whispered to me: “Donna, we’re all done and leaving… we’ll lock the front door behind us. I hope you feel better soon, sweetie.” I mumbled an acknowledgment, but it wasn’t nearly as heartfelt as what I was feeling.
Dawn saw me that day. She truly understood how much I was hurting. And I remember what I felt that day… she spoke to me with such amazing kindness; like a mother talking to her child. And my heart was so moved. And I was so incredibly grateful for her kindness, for her love, for her care. And I don’t think I ever really thanked her enough for that moment. She’ll never comprehend how grateful, overwhelmingly grateful, I was for that moment. Thank you, sweet Dawn. Thank you, thank you, thank you. I don’t know how I can ever thank you enough.
* * * * * * * * * * * * * *
The time my brother Glen was so kind.
My entire family came to town to celebrate my oldest son’s high school graduation. It was a busy time. I had been slowly and step-by-small-step planning a graduation party for my son. I was running on immense adrenaline… determined to pull off a fun party and enjoy every moment and my family. It was a big party – at the community clubhouse with catered food, popcorn machine, music, drinks, a photo booth, a beautiful cake, pictures displayed of my son from babyhood to adulthood… approximately 50+ people attended! The graduation was on a Friday evening and the party was on the Sunday after and it was a glorious party success… everyone seemed to have a great time! Most importantly, my son!
One of my biggest migraine triggers is let down after stress. And I’d been dancing fast on the adrenaline the entire week/weekend. After the party, we cleaned up the clubhouse and transported everything, including gifts, back to our house in a jumbled mess. I would sort it all out later in the coming days when family and friends left and flew home to their many different locations.
While everyone was still visiting in the house and enjoying each other, I slipped away to bed. I got into my PJs, wrapped my migraining head in ice, and put my ice booties on to treat my RA flaring feet. I tried to do the Isish Goodbye; I would just slip out of sight while everyone else enjoyed their time. It was about 7 pm. But my mother and my 2 older brothers sought me out and found me in my bed. I smiled and encouraged them to go join the fun in the other room. My mother and oldest brother, Dave, understood that after such activity, I was completely out of commission. But my second brother Glen had never witnessed me like this. I could see the shock and concern in his eyes, and it broke my heart; I wanted to assure him this was totally NORMAL for me. But he didn’t understand; he doesn’t understand someone living with incurable alignments like Chronic Migraine and Rheumatoid Arthritis. My mom spoke softly to him as all three of them stood at the end and side of my bed: “She’s been under so much stress and needs to recover. This is what happens to her.” (Then my mom probably relayed a story from her own life because that’s what she always does.)
Seeing the impact in Glen’s eyes undid me. I wanted to hop out of bed and be just fine for him. I wanted to do that; but I just could not. I smiled at him through my pain and tried to say something to assure him this was perfectly normal and he didn’t need to worry; he could just join in with the others in the living room. “Don’t worry about me,” I smiled at him.
At that time, Glen reached for my feet and started to massage them gently. He was trying trying to help. The love he gave to me at that moment. The concern in his eyes… it moved my heart in ways I can never express. He gently massaged my aching feet. A moment I felt seen and completely LOVED. And I can not thank my dear brother enough for that moment… for that love and concern. I’ll never forget the way he affectionately rubbed my feet. He saw me. He saw my pain. He saw my reality. And it broke my heart that it broke his heart. My sweet big brother. I will always remember that moment. Glen was an angel that stood at the end of my bed and massaged my aching feet.
Slowly emerging from sleep. Christmas morning is here. Some migraines still shock me, and this is one. I have taken medicine, and I’ve placed ice all over my head and neck.
Analyzing the migraine that is Christmas morning… it’s like an irate parasite climbing up the left of my spinal cord, into the very center of my brain… reaching out through my right temple and left occipital.
This Christmas migraine is colors and sparks and electricity and fire. And my neck is so tender and sore from the weight of my enraged brain.
This is an all-body experience… Every part of my body is aching, wounded, and in pain.
Dear Christmas Migraine, please release me.
8:00-10:00 AM, but I still have hope I can turn this holiday with family into something worthy of celebrating.
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.❤️
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!
mybeautifulmigraine 