‘There’s a lot of us out there that just can’t even get out of bed’: Living with crippling migraines

https://www.9news.com.au/national/migraine-pain-exclusive-symptoms-new-drugs-australia-mother-forced-to-give-up-job/2a86822d-4c9f-4970-8cc2-0fa505a169f4

Personally, the CGRP drugs I’ve taken have been a nightmare. One of my doctors said, “Your body isn’t a big fan of medication.” Not those that don’t fucking work!

For Your Consideration…

Working on half a dozen different things for the site. Unfortunately, I am plagued by a bout of migraines which aren’t responding to medication. I think this will be my last month taking Ubrelvy as a rescue med. 😦 Maybe my doctor will have another option when I see her in three weeks. I try not to use this stuff at all, but when a migraine hits and effects your neck, mouth, face, and the entirety of your skull, you’ve got to cut yourself some slack.

I feel bad that I’m not accomplishing anything today, but being coherent enough to write this is falling under the, “good enough” category I rarely, if ever, settle for.

Here’s an updated photo of Kitten to make up for my lack of words. She was being especially cute yesterday while I was working. I only came away from the altercation with two scratches (Her nails are currently longer than mine. Vet appointment in a week and a half for the terrors.) and a smack. She asks for belly rubs and then grabs my hand like she’s human. She doesn’t mean to hurt me. She’s quite gentle and sweet, really. Yet, like me, SHE BITES. 🙂

Have a good one. I’ll be back ASAP with something that is hopefully more interesting.

Migraines Are a Serious Problem. Employers Can Help

https://hbr.org/2021/02/migraines-are-a-serious-problem-employers-can-help

Even with a solid treatment plan that’s been in place for a few years, my migraines still plague me at times. I should be okay right now, but I’m coming off of nearly three straight weeks of intense pain and lack of sleep, so I’m in the state of waiting for the pain to return. Usually, my treatment nips long-term migraines in the bud, but this time, it didn’t. I am also on a new CGRP drug that I’m not especially happy with.

Another Day Ending in Y

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I have quite a bit to say, but it’s obviously not going to happen today. I am tackling post-treatment pain after having had an in-office procedure done yesterday. I legitimately can’t even feel ice packs right now. My skin is not detecting cold or heat, which is scary. I am dealing with intense nausea, which I have medication for, but still… I’m doing my best to cope with the fact that some side effects are normal and others are extremely rare. I just have to get through the next week and a half and hope things normalize a bit.

On the plus side, my doctor prescribed an oral CGRP to abort my migraines since triptans have failed completely. The hospital pharmacy could not have been kinder and they genuinely shocked me when they said they can ship my medication to me as soon as it’s approved. It took a month and a half to get a neck brace from a medical supply company, but the hospital pharmacy is 100% on top of things. Good to know.

See you all on the other side. Here’s hoping I get some sleep.

Telehealth and A Scheduled Appointment

After a failed attempt last month to have a discussion with my headache specialist regarding my migraines getting worse, today was my first successful Telehealth discussion, and it felt good. Really good.

If you have a doctor who actually cares, regardless of their field, this is not a difficult process. However, it has lead me to realize that my headache specialist has no patience and is a difficult person. I respect her, but I can’t work with someone who has no respect for me as a patient. I’m just a medical record number to her. There are many appointments where she spends a good five minutes reciting names, and the entire time, I know she’s looking for me, but since she doesn’t look at anyone, it’s good to wait until you hear some version of your name. She usually starts with Erica, and unless I see Erica there, because I’ve learned who is scheduled at the same time as me, then I immediately know she will eventually have a practice assistant approach her to read the proper name off the paper in her hand. She never seems to recall even the most basic info about me, so I wait until she logs into her computer. When a physician has said to you, on four separate occasions, “Is this your first visit?”, it’s startling that faces are blending into the woodwork for them.

Moreover, there is never a valid reason for a doctor to raise their voice and/or yell at you, but she felt perfectly comfortable doing so over the phone. If you’re going to yell at me and talk to me like I’m a moron, it will never get you the desired response. Not ever. I’m not an idiot and I am not new to any of what I am experiencing. Doctors who talk down to you aren’t doctors you need in your life. I feel the same way about regular people, too.

If you suffer from chronic migraines, you probably already know that enormous doses of vitamin B2 and magnesium aren’t going to fix anything. I can only take the magnesium once every few days. and B2 doesn’t seem to make any kind of difference. This is not my first migraine rodeo. She shouldn’t tell me it’s “perfectly safe” when she didn’t bother to see if I am vitamin deficient before demanding I increase my supplements. Instead, she placed blame on a myriad of other issues, and then tried passing the buck to another doctor. That’s not going to work with me because I’m an educated patient and her screaming at me did not garner a positive reaction.

What galls me even more is that she actually billed for a conversation that didn’t even last ten minutes. I contemplated a phone call to my insurance company about this, since their requirements state it must be at least fifteen to twenty minutes via phone in order for any of my healthcare providers to bill for Telehealth, but since they already paid, I’m not going to argue the point. Yes, we all deserve to be compensated for our time, but rules ARE rules and she dismissed me, as opposed to having an intelligent discussion. I am going to ask for a secondary neurologist (as an alternative opinion) as soon as things are safe to proceed medically because she doesn’t want to order tests or talk over treatment plans with me. She is the first neurologist who refuses to put an emergency plan in place into my chart. Every other neurologist handed me a note for any potential trips to the emergency room because every emergency room or Urgent Care finds it so much easier to treat you if they have instructions on how to do it. We are all different and what works for Patient A and Patient B probably doesn’t work for me. I refuse to set foot in an emergency room ever again, but even my last Urgent Care experience was poor care, and it didn’t even involve migraines. Poor care seems to be the status quo, but I am fighting to change that because I’m not the only person who has had enough of the bullshit.

This incident made me even more grateful to have a tuned in discussion with someone today, and to have the take away be that I am doing my best and that the things that are creeping up out of the woodwork are things we will address and gain control of over time. A collaborative relationship is so much easier, and calmer, than a relationship where a physician thinks they can dictate your treatment to you. I hope she doesn’t have children, grandchildren, pets, or even a plant, because I’ve found, over time, that the way the majority of medical professionals behave at work is also how they behave in their daily lives. Others are clearly living a duplicitous existence because they’re only nice to their family or their patients, not both. Yes, I speak from personal experience.

Today, I was notified that my headache specialist will be honoring my treatment for this coming Wednesday. Do I think it’s an essential appointment? I don’t know, but I do know that I’m sick and that I would likely get worse without it. Thanks to a cancellation, my appointment was moved up, so that helps a bit, but having to wear a mask and gloves into a medical building is anxiety waiting to happen. The mask makes me terribly claustrophobic. I’m agitated just thinking about it. A lot has changed since my last treatment in February. I am hoping this one works well and that I am not in the building any longer than necessary. If I didn’t feel the treatment was working, I would reschedule, but I’m going. The mask and gloves redefine “Mugger Chic”. 😉

I am not feeling anxious or stressed over Covid 19. I’m just more self-aware and mindful regarding everything, and I am sure many of us feel the same way.

I’ll be fine and I have another Telehealth conversation scheduled for next Friday, so if I’m not fine, there’s someone on the other end who gives a shit, and that is comforting to know.

© 2020 by Lisa Marino and Blackbird Serenity, LLC. ALL RIGHTS RESERVED.

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