Sunday night migraine… 13 days late on #BotoxforChronicMigraine because of COVID19 Shutdown and my neuro’s decision to close the office. 13 days ago at my telemed appointment, my neuro said she’d write me a script for the new migraine abortive med Ubrelvy. It’s still stalled at Austin Neurocare for prior auth and has been for over a week. 🙄 I’m starting down the familiar emotional road of feeling ABANDONED by my neurologist. #abandonedpatient This is an uncomfortable and upsetting feeling.
Never in 9 years of Botox have I even been ONE day late for injections. Botox is cumulative. So there’s a nagging question… with all these delays in treatment, will botox require a few treatments “to catch up” to therapeutic levels? I vacillate between moderate pain and symptoms to desperate despair to embarrassment to glimmers of hopefulness to runaway anxiety to resolve to horrific levels of pain and symptoms where my head is on fire, my teeth are brittle and raw nerves and my jaw feels like steel that might snap. I’m not really “myself.” Just a very solid shadow hanging on by fingertips.
My husband and I just had an interesting exchange tonight…
Me: I was in so much pain before, crying and moaning. Marc: when was this? Me: After dinner. Just about an hour ago. I was laying here in bed in so much misery, rocking, goaning, crying, not wanting to go on, but now the medicine is helping a bit. Did you not HEAR me? You are right there next to the bed! Marc: (scoffs) Oh… I thought you were just moaning in pain… like you used to do when you were in labor.
Me: 😶 Me: Yes… well I’m glad we cleared that up. Sorry again.
(Like I used to do in labor!? Childbirth labor, as in the most PAINFUL experience in the world? And that didn’t alert you that I might be in incredible pain? Or trigger something inside you… like, Idk, an emotion of concern… or care? Just… wow. Okay. Nice.)
If I just died here tonight… it wouldn’t be a bad thing. Migraine at a 5-6 but my jaw and teeth… omg, they are so brittle and in so much clench pain. My head is a thousand degrees. And my sacroiliac is having a tantrum. This is a day I break my own rule and ask… WHY. Why. Why. Why. Why. T storms tomorrow. My roots grow deep here in bed. Love to all❤
“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.
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.
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 🦸♀️
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.