#ChronicMigraine #MigraineAwareness #CMA #ARMS #CMAware
“There is peace… even in the storm” Vincent van Gogh
A new day… a familiar neurological storm.
There is no cure.
Day after day. 9 days late on botox. Yesterday the migraine was manageable… I attended a telemed doc appt with rheumy and ran an errand to UPS. Today’s migraine has decked me. Every medicine is failing. Even my muscles are cramping in my legs.
#ChronicMigraine #MigraineAwareness #SpeakYourMigraine #BotoxforChronicMigraine #CMA #CMAware
I’m writing this Thursday night. Attaching information from our county’s covid information update site.
It’s been an awful 2 months. I’m not in status migrainosis and I’m not in rebound. My migraines keep pace with even minor weather fluctuations as well as this added anxiety and stress over the many losses (my childrens, my own) and difficulties re covid shutdown. My migraines follow the migraine pattern just perfectly: prodrome, attack, postdrome – they don’t last longer than 3 days but they are triggered incredibly frequently. For instance, I was in very bad shape this Easter weekend (tornado warnings Sunday at 04:30), but found a mild reprieve when the weather was stable for over 24 hours early on in the week. Wednesday was my son’s 22nd birthday and I migrained all day but still videocahatted with him. Thursday I woke up in decent shape, attended a GYN office appointment, came home, collapsed and slept all day in a wicked prodrome pathologic lethargy. I woke up in terrible migraine in the evening. Looks like there is some more weather expected tomorrow. I took my abortive medication with some relief. My head is plastered with ice packs. I’m nauseous, my head is so hot and my feet are freezing (thermoregulation disorder symptom). It feels like a crevasse is opening in my right side of my brain. My jaw is instinctively trying to clench to help with the pain. I’m actively forcing it to relax. I’m focusing on breathing and applying counter pressure and ice. I’m only opening my right eye slightly, and trying to keep my body and head as still as possible (movement makes everything worse). This is Chronic Migraine in all its glory – especially since my preventative has run dry and I’m white knuckling life.
“We all have to be patient during this time,” you said. But… do we? How can I help but ask? What else is there to think about when you have a right-sided crevasse in your skull?
This leads me to my other point. I don’t foresee me being able to wait for botox. Right now stay at home is extended. And frankly I’m not at all clear about what model Austin Neurocare is following and when they’ll be willing to start helping patients with office visits. It seems you’re on your own timetable.
Sadly, I’m feeling forced to utilize another option which we spoke about – a pediatric neurologist in the area who is continuing to treat patients who need botox. Hopefully you can share information with the practitioner who treats and helps me, if she needs it.
Doctor, I know you spent a good amount of time explaining the “presidential mandate” reason (during our telemed appt) for closing the office, but my husband and I surely didn’t feel it made complete sense, because Presidential mandate or whatever, it appears doctor offices have a tremendous amount of individual authority over their own practice. Independently, they are making their own decisions on treating OR refusing to treat their patients.
For instance, the GYN appt I attended today: no problem! I was thermal checked at the door, we all wore our filtered masks, and nothing was all that far from ordinary. My husband has seen his podiatrist 2-3x during the shutdown – and in truth, these visits haven’t even been remotely essential! As his foot issue is not a big deal. But, there has been absolutely no change in procedure. The allergist continues to see patients… their office has changed procedure a bit with face coverings and even treating patients with their allergy shots in their cars! And of course there is no change in primary care providers for ourselves or our children – besides the thermal check and masks. All my other doctors: endocrine, rheumatology, pain medicine, psychiatric NP – have given me the option of telemedicine. But I could have opted for office visits, if I chose. Our dentist has closed his doors and is referring emergencies to an oral surgeon (but I think he may be on a mission trip).
I’ve read the healthcare “mandates” with covid and I completely understand where it says “non essential surgeries and day surgeries are canceled” … that makes a tremendous amount of sense as the hospitals are needed to treat covid patients. But I can’t find any documentation FORBIDDING essential healthcare office visits – or even non essential healthcare office visits! Nor can I find information where full hazzard and contact PPE is required or even suggested for physician’s offices. You explained your staff would need N95s and face shields to treat patients. Why would face shields be needed for botox injections? That doesn’t even make any sense. Certainly just eye protection would be ample… unless an unmasked ill patient was actively coughing on your face.
Like I mentioned, I have a new medical bag of surgical masks (20) that I’m happy to donate to Austin Neurocare! They are yours for the taking! If you really think face shields are necessary, I know several local citizens in our town who are donating 3D printer created face shields and I’d be overjoyed to arrange a donation to Austin Neurocare. I’m not really sure Austin Neurocare is a covid hotspot of treatment though… which is why full contact PPE is so baffling.
Like I mentioned, my other in-person appointments went amazingly smoothly with masks alone.
Why am I so focused on my neuro treatment (besides the fact that  botox is essential for me and has been the only preventative that actually helps me,  I plan my entire life around that one day every 12 weeks,  I’m essentially abandoned by my provider)? Mostly, I’m kept up at night thinking about the dozens of Austin Neurocare chronic migraineurs who’ve been abandoned as well. This is so absolutely appalling. And what’s worse… there doesn’t seem to be a valid reason for it. Hospitals should be kept free of non essential procedures. Physician offices? They have their own autonomy to perform essential procedures. I can’t even imagine a neurologist or headache specialist that wouldn’t agree that for many chronic migraineurs, botox procedures are absolutely essential. ESPECIALLY because NOT receiving this particular essential treatment can absolutely send the patient to the EMERGENCY ROOM – covid hotspot! This refusal to treat is 100% counterproductive.
I would love to think that other migraineurs of the practice would be able to benefit from my questioning this decision, my donated PPE, or anything else I could provide. When you told me about the other migraineur who frequents the emergency room, it really upset me. Just imagining the other chronic migraineurs in the community who look to you in desperate help to provide essential treatments in order to have some shred of “life”…. when I think of them feeling the same shock, abandonment, loss, hopelessness… trying to hang on through a pandemic (difficulties obtaining groceries, job loss, homeschooling their children, caring for their childrens’ emotional needs, trying their best to keep their family safe and address all the mental aguish) without even a basic migraine prevention medication! When I think of this, it’s so clear that this is NOT a just me problem! And as an advocate of people living with migraine disease, I am compelled to speak out for those who cannot.
Please. Please don’t abandon your patients in need.
I don’t think I’m a serial complainer, I don’t think I’m a noncompliant patient, I don’t think I’m a difficult patient. But I am an advocate. And I’m also in a very dark place.
I realize my words will probably offer very little change… it will probably just be something we have to agree to disagree about. But on behalf of we living a recluse chronic migraine life, I am glad to have said it.
Please stay healthy! Praying for your husband on the frontline battling this virus and saving lives! Please let him know how grateful we are for his sacrifice – for all your family’s sacrifice! And thank you for taking the time to read this.
#ChronicMigraine #MigraineAwareness #covid19 #covidquarentine #covidshutdown #botoxforchronicmigraine #austinneurocare #chronicillness
UPDATE Monday (4 days later):
Dr Westgate called me today – after receiving my letter. She was distraught to hear I felt abandoned and she has me at the top of the list for botox … she said they may open May 15. Which is still… far away. I believed her completely that she didn’t want me feeling forgotten and they were very willing to try different medications… they just cannot open the office due to covid safety concerns and the AMA recommendations.
She has no problem sharing my treatment plan with another provider in town who can get me in earlier – a pediatric neuro who is continuing to treat patients during shutdown (as their practice considers migraine treatments essential).
I admit that I do not understand the large discrepancy in care I’m seeing with independent doctor offices. It is absolutely baffling to me. And, today Gov Abbott made changes in restrictions as TX’s covid “peak” is supposed to occur this week. Nonessential procedures and surgeries are allowed now and our hospitals are definitely not near capacity.
Of the chronic migraineurs all over the country I’ve heard from, greater than 50% have had no interruption in botox treatment. Baffling.
I am now only 7 days late for botox. The new provider Dr Kate Labiner anticipates she can get me in by next week.
Today was a tearful day… 1) so many days of pain and symptoms are soul crushing, 2) I could sense my physician’s concern and care and feelings of helplessness, 3) the fact I’ve been connected to an incredibly kind and supportive provider who can help is overwhelming. Words fail me – a friend with her own trials has helped me.
I’m always surprised how many tears there are in my head. It seems I’ve cried an ocean. It’s my superpower 🦸♀️
Thank you all for your support.
There are people dying during this pandemic. I get that. And I should be grateful for our health…. so writing this has been difficult for me.
At first the nurse told me it was because they didn’t “have PPE for themselves and their patients.” When I offered to supply their office, she said they just “weren’t seeing patients.” And I should “call if my head got worse.” Is this a fucking joke?
I’ve never missed a treatment in 9 years. I plan life events around that ONE DAY every 12 weeks. It is the ONLY treatment that has helped with Chronic Migraine in 12 years. When the medicine starts to wear off at 8-10 weeks I begin a mental countdown to the sacred appointment.
Home Depot is open. Liquor stores are open. Even gun stores are considered essential.
The past couple of days I was stunned, despondent, heartbroken… yesterday I moved on to morbidly resolved. I write this post because I can’t even talk about it without falling apart. Absolutely horrible migraines this past month. There is this part of me that doesn’t understand the cruelty behind this decision and alternates between wanting to die and wanting to punch someone in the throat. Mostly I’m just a puddle of tears. I am abandoned by my medical provider. This is what medical abandonment feels like. Mariah instructed me to make sure and contact her if I needed help. “There are things we can do; medications we can call in.” I have a one way to contact … through the office nurse who can be an utterly horrible human. I feel like I’ve been fed empty words and been abandoned.
Meanwhile, my husband’s allergist office and podiatrist have no issues continuing appointments.
#ChronicMigraine #MigraineAwareness #SpeakYourMigraine #COVID19 #covidquarentine #botoxforchronicmigraine
• Coronavirus lockdown for one week
• Unstable weather patterns
• Uncertain times: are we overreacting or under reacting?
• Why is toilet paper selling out?
• Massive migraine action for me… the worst started Thursday and ruined all of today (Saturday) too.
• Thursday every medication was failing and I finally turned to my shots. An expired Sumatriptan injection helped.
• I finished the 11 seasons of MASH on Hulu and had to say goodbye to Hawkeye and Houlihan, goodbye to creative comedy and OR scenes that first stirred my interests to become a nurse.
• Friday was procedure day at APC… back injections into the lumbar area for some sacroiliac relief (its been bothering me like crazy since the DC trip). All the staff was masked and I was thermo checked and screened at the door. Marc wasn’t allowed into the building – only patients.
• Bless their hearts, not all the staff were using protective equipment correctly. The medtech who took me back, had an N95 mask on but kept sticking her fingers between her mask and face by her mouth because “it was hot.” The office worker wore her mask below her nose. Everyone else was fine. Doctor Michaud came to check on me before procedure and he was not wearing a mask. No one tells Dr Michaud what to do!😂😍
• Tried to rest all day… but there was an El Arroyo margarita ZOOM party at 8 with the neighbors. I could only stay about an hour. Then there was more migraining to do.
• This morning my migraining was exploding … out of the back, the sides, the front of my head. Medications, rest, Cefaly. I couldn’t get out of bed. I lay in bed… barely moving… just dying. One of those migraines where I can’t believe how bad it is… one where I don’t bother hiding from my family – because I’m too too sick. Completely ruined day. One where I remember: “Wow, I really DO have migraines – don’t I?” Omg, it hurts so much.
• Finally a dose of butalbitol and phenergan helped. That phenergan… it can really be a blessing when migraine has shut down my gut.
• Sunday I felt some relief. Amazing. Truly amazing. But I was too tired to really get anything done. I folded a load of laundry and cleaned the birdcage. Huzzah.
• Watching the tv series the Dead Zone with Anthony Michael Hall cuz it’s a bit of reminiscence.
• Prepping our world for continued Coronaquarantine remote online learning. The world is indistinguishable; never has this happened before. No word on how long it will be like this. Everyday is a little weirder. The situation is fluid. Very fluid. Unprecedented times.
• Watching the Normals have an apoplexy from quarantine is a little funny… watching the general public misuse medical equipment is amusing as well. There is great loss: both Robyn and Nick have lost their jobs (put on temporary leave). Schools have shit down: the kids will continue UT (Ken) online, TAMU (Corey) online, LTHS (Nick and Robyn) online. No word on prom or graduations.
There is also great kindness and beauty: our community tries to help local businesses with take out restaurant orders and someone need only post an ‘ISO’ post and there are offers to help.
• This will be a time to remember for certain. A time when people will ask “Where were you when…” All because of a funny little bug: the COVID19.
Migraine has always been a part of my life. So when I was asked about my first migraine experience, I had to think a bit. When was my first memory of this neurological “storm?”
And then I stumbled across a vivid one. I must have been 6 because I was at a YMCA summer morning camp. I didn’t need or usually attend summer camp – my mom was a stay at home mom. So I must have wanted to attend, or even joined with a friend.
I don’t remember all the particulars, but camp ended with all the children meeting in the YMCA gymnasium before it let out at lunch time. In my memory, the room was huge and echoey – in that way school gymnasiums are, hundred of kids on wooden bleachers, singing or shouting and stomping a camp song together. It was loud. I remember sitting with my group and trying to participate in the activity. I could not perform well; I couldn’t sing along, just stare and go inward. The entire episode was intolerable. There were too many people and it was too damn loud and I felt sick to my stomach and… there was something quite wrong with my whole head. It vibrated and throbbed as if it’d been struck like a gong. I wasn’t having fun at camp; I wanted out. I was “spaced out” and confused and I wasn’t able to think of what to do….except wait for camp to be over and wait for my mom to pick me up. I wasn’t scared and I tried to keep up with the activity.
When I got in the car, I was quiet. And since the loud echoey noise was left in that gymnasium, it was easier to handle my gong-head and nausea.
I must have looked pale or distant or like something was wrong and I must have been able to verbalize some of what I was experiencing. And my mother really saw me and had no hesitation diagnosing, “You are having a migraine,” she said.
Some people wait years and years for their diagnosis. I was diagnosed in a few minutes.
How did my mom know? Because she was an episodic migraineur. She struggled with hormone and stress triggered migraines one to a few times a month. She described them as 3 day crescendos, with the pain becoming it’s highest level on the last day. Then she described the postdrome as feeling “bruised all over the day after.”
She did not have aura or visual aura. And neither do I. And for many many years, she did not have anything for treatment but aspirin, until the 1980’s when ibuprofen became available. And by the time my mom went into menopause, her migraines nearly ceased to exist. My dad would also occasionally get “weekend migraines” from stress letdown from his work. I’m told even my grandparents had episodic migraines. It’s clear I have a very strong genetic predisposition for Migraine.
So on that day… that YMCA camp day with my migraine, my mom took me home, gave me some yummy chewable aspirin and some food and drink, and put me to bed.
And I recovered.
I also remember another migraine when I was older… probably age 10-12. I was in bed in my dark room, miserable with throbbing head pain and light sensitivity, and waiting for the ibuprofen to start working. My dad came in to check on me and he started to massage my head. He was used to doing this for my mom and her migraines. He massaged my head, found where the pain was worst and applied pressure. I remember it as one of the most amazing feelings of my life… like my dad was expelling the migraine from my brain.
For so many years, I was in good control of my migraines. Ibuprofen and rest was my effective treatment. I never doubted it would be a part of my life, but I didn’t have any idea it would be so much more.
I’m still me. I’m still in here. But there’s this strange and ridiculous chunk of my life that is this other thing.
What would my “normal” friend say if I told her I’d been wearing pajamas for 5 days? What if she saw my freezer drawer with 15+ ice packs? What if she saw my medication drawer?
She might run screaming. And understandably so… my Chronic life is so far from what my Normal life was. I wouldn’t have understood it back when I was a Normal. And I’m a nurse; I should have understood! But nowhere in school or clinicals did they discuss chronic pain.
Which is why my Chronic friends are so critical. Some of our correspondence through Facebook messenger, Instagram direct messages, and texts are freaking hilarious. Hilarious in a dark, wacky, weird way. My Chronic friends are people I can vent and connect.
When we ask each other how we are… we don’t smile and lie and answer “Fine.” We lay it out honestly: “I’m still in bed and it’s 1pm! My head is a bastard and I’ve got a heater on my sacroiliac nonsense. How are you?” Sometimes we talk in Pain Scale: “My head is only a 4 but my RA is a 7 and I can’t keep my eyes open.”
We all have matching night tables with a pharmacy drawer chockful of medication bottles, “Big Bertha” pill organizers, an unusually large amount of icing and heating instruments, drug-free treatment mechanisms, massage gadgets, and other tools that poke, prod, stab, flatten, relax, bruise, knead, manipulate different areas of our body.
Our houses are not like other homes… we have a “nest” or a “perch” where we crawl to when the hurting is too much. It’s our Spot. Mine is my bed… in my bedroom where I haven’t opened the blinds in over 5 years. It’s where my kids and my husband look for me first when they come home. My Spot is surrounded by everything I need: many pillows and blakets, heating pads, my nightstand with it’s medication drawer and the second drawer full of topicals – Biofreeze, Voltaren, Arnica, IcyHot, essential oils, numbing sticks and more. And always a lip balm. Because lip balm is an amazing thing that is both critical for dry lips and can make us feel a little more alive!
Chronics need distraction. While we are in the nest, we can watch tv sometimes. It can be a helpful distraction from pain… during attacks computer screens and books are difficult, but Netflix… we can sometimes handle that! And we’re Netflix experts and we can talk show shop. “Did you watch that series?” “It was pretty good.” “Oh I liked that one a lot!”
We keep our phones nearby… it’s great to connect through Facebook support groups or text each other. We understand when it takes awhile for another Chronic to respond as they may be busy with very difficult task of SHOWERING. Or they may be too sick to open their phones. If they can respond, sometimes their responses might not make sense if they’re in a bad way. It’s hard to spell and autocorrect is a jerk when you’re hurting. Aphasia and brain fog certainly don’t help writing and communicating coherently.
Chronics don’t call or Facetime each other. We wouldn’t dare. That’s just altogether too intrusive. The other Chronic may have 3 day bedhead, drool marks on their face, ice or cups attached to their head. It’s a definite possibility. And that would be awkward.
Our calendars look the same: often littered with many doc appointments, therapy, treatment, and lab appointments, and the like. We may have a busy day with obligations of “Normal living”… those days usually have rest prep days and rest recovery days worked in – if we know what’s good for us.
Many of us have “furry caregivers”… our dogs and cats are Chronic comforts. They are so important and I know as much about my Chronic friends’ animals as I do about their children. We might try to hide some of our illness from our families, but our pets see it ALL.
We know how to celebrate the big things: “I did a load of laundry today!” “I cleaned the cat box!” “I made dinner!” And we applaud each other with celebrating emoticons and hearts. ❤😍💪😃👏🎊
We have found each other, we understand each other, we don’t have to pretend. And there’s an empathy and recognition that only other Chronics get… we care deeply for each other… we share pain and burdens and blessings. And we are always there to support and encourage.
Actual Chronic A, B, C conversation:
A: “I’d go but I’m in the worst shape: migraine everyday.”
B: “g*d da** it! It’s no f***ing fair!”
C: “I’m so sorry, I can’t believe how sh*t it’s been.”
A: “I feel like THE biggest loser.”
B: “I was saying exactly the same thing today.”
C: “No one gets it but you guys.”
B: “Me. Complaining everyday about something insane. Yesterday I couldn’t believe how bad my back was. Then today my arm! Yesterday my head was insane!”
A: “Seriously this all embarrasses me. I’m like only out of bed to go to the bathroom. My SI is giving me searing pain from my a** to the instep of my foot. What the actual f*ck???”
C: “And the weather! It’s been rain and more rain. There’s no way I can function with the s*it!”
A: “I took my son to the doctor today and found out they have an online scheduling portal, so I’ll never have to operate a telephone to schedule him in!”
#ChronicMigraine #MigraineAwareness #SpeakYourMigraine #ChronicIllness #Automimmune #invisibleillness
It was a Friday and I sucked up my courage through enormous pain and symptoms, and I posted on Facebook:
A candid moment: Chronic migraine is a dead sexy disease – as you can clearly see. There is no cure, and medicines that work sometimes, don’t work other times. I wish my outward smile was always genuine. All I want is to be somewhat normal and free from daily head pain…and if I never take another pill in this lifetime, it will be too soon. I hate boring my friends with my oppressive condition, and I don’t look for pity – just awareness. Migraine is a neurologic event, usually with three stages and only one of them being head pain. I’m not a complete freak – there are more of us silent invisible pain warriors out there than you may realize. We are trying our best to live a full life and we just hate having to report the bad news to friends and our docs (we have lots of docs!) that this or that treatment did not “fix us” despite our hopes, efforts and faith. In fact some of the treatment side effects are worse than migraine itself. Sometimes the pain is so relentless – like endless waves of the ocean on a coastline – that you begin to really despair – it is a lonely place.
Peaceful brains and love to ALL!
Signed, a grateful soul ❤
The response I recieved was very supportive. 21 people reacted and 17 people commented.
I guess I had just had enough hiding. I was sick, so sick. And I had discovered others like me about 6 months prior. Had I found my voice for advocacy? It was my time to #SpeakYourMigraine
#ChronicMigraine #MigraineAwareness #ChronicIllness #invisibleillness
This was so good that I cannot stop crying.
#ChronicMigraine #MigraineAwareness #SpeakYourMigraine #AHDA #HOH2020