And there it is this morning… it’s a crescent shape in my left frontal forehead. A crescent moon shape of pain… a rumbling brawl that will not be silenced; complaining, grumbling, muttering… demanding to be noticed. And so, yes, I acknowledge you, Migraine. The crescent slides down into my left eye. There it is: Chronic Migraine. I admit it to myself again that – verily – I do have Chronic Migraine. We forever walk hand-in-hand. Old frenemies; recognizing each other every day. Each day the sun rises, arcs across the sky, and sets, as the moon follows. There are no holidays. There are no resets. There are no interruptions… our relationship is built on rock and resolve. We are in this body – and share this life together. There is no cure for Chronic Migraine.
I’m listening to you crescent moon. I hear you. When I close my eyes… when I open them… I hear you. And I recognize and know you.
It is time for me to be honest, and it is time for migraine medication. I’ve moved back to my prison bed… supine pose… I took a maxalt with Marc’s assist because he is just that awesome and I love him dearly with my whole soul.
And the riddles start immediately: will the medicine work on crescent moon? If I stop here, right now… supine in my prison bed, resting, releasing every tenion in my Chronic Migraine body; a state of intentional repose… will the maxalt start to erase the constant fierce ache slipping into my eye? Will it do anything? Will my body just ignore the maxalt? Or will it stand at attention, metabolize and perform as it is intended, and silence the crescent? Always the same riddles. It’s boring. It’s tedious. It’s stupid. It’s repetitive. It’s the same old story and just a new day.
As I bring this small post to a close (keeping only one eye open and intentionally reslaxing), I can report that the crescent is quieting. For now, at this time, maxalt is working. 🌙 And that is a wonderful, wonderful thing.
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.❤️
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.
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.
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. 😒
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.
mybeautifulmigraine 