I’ve been so blessed to find Krishna Polkala MD Neurology after my neuro of over a decade, Sara Westgate MD retired her practice a couple of years ago. Her retirement sent shockwaves across the Austin migraine community; we’d lost a huge provider. Dr. Polkala did an amazing act; offering to take as many of Westgate’s patients. Not only does Dr. Polkala has a great bedside manner, he agrees to use my own “botox map” that works really well for me. Instead of the traditional neck injections, I get more in my forehead and 1-2 in my jaw. I always joke that I need a “plastic forehead;” most of my migraines are frontal, not occipital. He also is incredibly understanding about how important Botox is for my Chronic Migraine treatment and will squeeze me into his schedule so I’m on time for every 12 weeks. And he will absolutely collaborate with me on my medication and care.
Every Botox day, he asks to see my photo of my “map,” so he can make sure to follow…
This Botox “map” took several years to get right for me. My neurologist and I collaborated for my personal migraine needs.
Today, I brought my Cefaly for Dr. Polkala to test 😁 … to make sure he can truly understand when he makes recommendations for other patients.
I love a great doc!
He needed me to remove it when Cefaly got to its intense level. Lol.
As he was injecting me today, Dr. Polkala said something really special to me: “You know, of all my Chronic Migraine patients, you’re genuinely one of the most positive patients I have. Some of my patients get mad or irritated at me if they have a side effect, but you never do.” That truly touched my heart.💜
I explained to him that with lots of therapy analyzing •how much I fight my illness vs. •how much I accept my situation – this has been a constant struggle for me. But I’ve worked very hard to focus my life on just one moment at a time. And appreciate each moment, prioritize what is important to me: •my family, •my advocacy, •my business of serving women, •my friends. If I focus too much on what tomorrow might be; the pain to come – that is the definition of anxiety. If I focus too much on how bad the past has been, how much I’ve lost and been in pain – that is the definition of depression. I need to live in the moment; it’s truly all we ever have, and it is precious. I also accept how critical REST is; rest does not mean “lazy.” And my broken body must rest before and after everything I choose to spend my time on. And that just has to be okay. 🙂
So, I got my 30+ injections on this most precious Botox Day.🎄 And was home before noon. I’ve been in bed the rest of the day… hurting, sleeping on and off, taking my medicine. Hopefully, the magic juice starts helping in about 7 days. It’s been a rough couple of weeks here.
Migraine remains a poorly understood illness…The syndrome is too various, too complex, to mixed up with external stimuli and the personality of the sufferer..I have come to understand that my headaches are cyclical and that they play a part in my emotional economy.. The truth is that separating neurological from pschiatric problems is often artificial..
Siri Hustvedt, from “Arms at Rest,” excerpted from “So Much More than a Headache: Understanding Migraine through Literature, Edited by Kathy O’Shea
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.
New day. New migraine. New Cefaly. 🙌🏼 It’s doing its thang💥
@cefaly_official #CEFALY #cefalyselfie
I got a NEW Cefaly! Took advantage of a 15% off sale and trade in discount of my old device. Thank you, Cefaly!
I really, really appreciate the migraine drug-free device. It HELPS. The device is like a tens unit for the trigeminal… it feels like a small “electric” in my forehead, up the top of my head, down into my nose. It even forces the muscles in my face, head, and jaw to relax. I really appreciate the hour long ACUTE setting for treating migraine pain. It is so empowering to have a powerful drug-free migraine tool in my tool belt.
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!
mybeautifulmigraine 