Migraine and Headache Awareness Day 2022
I’ve had a migraine for almost thirty days straight, so bringing awareness to how severe and disabling this neurological disease is, is extremely important to me.
Maybe one day I will feel comfortable discussing how far I’ve had to go in terms of treatment methods. People who know wince. I’ve discussed it with very few people because I was immediately shamed while researching more progressive treatment methods. I was told it couldn’t be THAT BAD. Okay, live my pain for a month and see how you come back. 🙄 I don’t talk about it because I enjoy it!
Until then, please know migraine sufferers aren’t having a vacation when they bow out of family functions, having coffee, lunch dates, birthday dinners, weddings, etc. We’re not using it as an excuse to not have fun or celebrate life; we’re explaining why we can’t get out of bed. We wish we didn’t have to, especially to migraine deniers who wouldn’t know what to do if a vicious week-long migraine slammed into them. Until you’ve walked a thousand miles in my migraineur shoes, you have no right to judge me. I don’t engage with people who don’t understand that every time I get a migraine, I first have to assess what kind of headache I am dealing with. Is it my allergies? Is it my sinuses? Is it a tension headache? Is it coming from my jaw? Is it a stress migraine? I have to assess all of those things and then take the appropriate medication. Unfortunately, the appropriate medication doesn’t always work, and I end up in a vicious cycle I can’t break. I am not alone. I go for treatment next week. Here’s hoping it works.
The Traumatic Journey: Part I
I’ve been quiet for what seems like forever, and anyone who knows me knows I use my platform to communicate and inform; even if my subject matter isn’t popular.
It’s likely obvious to my regular readers that I am going through some heavy shit. I am. Unfortunately, I am also numb to a lot of the things other people are talking about right now. Not because I lack empathy or compassion; neither is true. I am trying to work through a 747 full of trauma, and through that journey came more trauma, and more, until I reached a breaking point.
Let me be clear: I’m okay. I am on the other side. Mostly, I am angry, in a lot of pain, and trying to be strong. A lot has been going on for me, and it will come out in the pieces I am writing, just not all at once.
I am coming off of a fresh set of nerve blocks and once again, I am sorry I did it. Once I feel better, I get to begin to fight for occipital nerve blocks. My doctor has already heavily documented occipital neuralgia in my chart, but my insurance has refused to pay for these injection sites, claiming they are experimental. They aren’t. She actually told me not to fight for it. Any doctor who would say that to me clearly doesn’t know me very well. I know it’s a covered procedure. The nerve blocks they immediately agreed to pay for are actually far more expensive than the one’s they don’t want to pay for. It makes NO sense, and I’m nothing if not a fighter.
This was my third time getting supraorbital nerve blocks. These hurt like I cannot explain. There are multiple injections, and they go under and into the brow bone on both sides. Because of the dose, it’s not quick. You’ve got a needle jammed into your bone for a good 45 seconds or so. The majority of my facial structure is bone, as so observed by my doctor. For me, I then have to apply pressure because these locations bleed heavily. There are a few which go into the supratrochlear nerve, a series goes into muscles in my shoulders, and she chose to add extra starting at the top of my spine, under my hair, going 3/4’s down the spinal column where I already have arthritis and Lord only knows what else, because my doctors won’t order additional tests if an x-ray will do. If she didn’t give me the medication, she’d have to throw it out. They are paying for an entire vial of medicine, but telling her not to give me a particular set of injections. One day she mentioned, in her frustration, how she is forced to account for every drop of medication she tosses, and how it’s incredibly wasteful for them to only pay for small amounts of these medications, and then ask her to throw it out. My nerve blocks are steroid free and are supposed to last 6-12 weeks. I was asked to give it a year before I say yes and continue, or decide to stop them. I don’t know where I stand on this moving forward. It’s a lot of work suffering from chronic migraines and worse with a spine that’s badly damaged. I’m definitely not having any fun on that level. 🙄
As she was injecting my shoulders and spine, my doctor told me she could feel how tight the muscles are. Mind you, I am also on long-term muscle relaxers for a full body experience. I’m careful with them because too many, “relaxing” medications can cancel each other out. If I don’t take them, I can’t always move, and if I do take them, I don’t always feel them working. 😔 I worry they will be taken away because so many doctors are making pain patients choose between treating our pain and treating our mental health. It is wrong, and I am vehemently against any doctor who tries to pull this on anyone. Mental health IS healthcare, and if doctors ask you to choose, find another doctor. The fear-mongering in medicine has got to stop. I’m sick of it, and I know I am not alone.
Much of the time, I factor in how long I’ve suffered from migraines. It will be twenty-five years in December. That’s a long time to suffer from anything, but imagine daily migraines. I was given my diagnosis at my very first appointment, a diagnosis most people wait 1-5 years to get. I tried all the usual suspects medication-wise, and they failed me. Each time a new symptom surfaces, I hesitate to bring it up with my doctor. I asked about a medication I had never heard of and she shifted her tone and behavior immediately, because the medication in question is a narcotic abortive nasal spray. I’m glad she decided she, “Won’t be prescribing THAT,”, but I wanted to say, “What if it REALLY helps me? What if that drug is the only medication to stop my suffering?” She was so dismissive, she wouldn’t even look at me. I immediately felt less trusting, overall.
Most doctors require a reminder of the Hippocratic Oath when they make such bold refusals. “Do no harm.” They absolutely, be it intentionally or unintentionally, ARE harming their patients. I have seen things in my medical record that make me want to scream. So, many doctors are harming their patients, en masse. As is the government, which needs to get the fuck out of my health care, as well as the insurance companies. Our pain is a political business to them, nothing more. All they care about is money, and if you don’t believe me, look into how much the government paid for your Covid vaccinations. They don’t come cheap. Doctors at hospitals are on salary and insurance, along with the government, dictates what they can and cannot prescribe. That is NOT okay. Pretty soon, they will be regulating alcohol and killing off millions of dependent alcoholics. Just like with pain patients, the only people who care will be those who get left behind. And the brands who depend on the business. It could all come crashing down.
I am frustrated as hell living with multiple diagnoses of pain disorders and only having a tiny percentage being looked after. Something I take, as needed, might be causing serotonin syndrome. I have to stop taking it, and this is something that costs a fortune out-of-pocket, until I speak with my doctor, who will almost certainly run lab work to make sure I’m not in the rare danger-zone. My symptoms indicate I might be, and that’s scary as hell.
The more I deal with medical professionals, the more I am marginalized and traumatized. It’s a system that is irreparably broken. It is rife with systemic racism and people who never should have gone to medical school in the first place because they have mind-blowingly limited knowledge in their chosen field. If you can’t do a little bit of everything and truly care about your work and how you are perceived by your patients, then please go the world an epic favor by going into a different line of work. We don’t need anymore crappy doctors. You’re embarrassing the few good doctors we’ve got!
With all of this going on, I am also working on two manuscripts. I wanted to make them a Spring/Summer project to see which one would be near completion by the end of October. They both have enormous potential, but I’ve written double the word count on one, whereas the other is about seventy thousand words. If either starts to get on my nerves, I’ll work on the dark urban fantasy material, instead. Because I’ve been in such crippling pain, I have written and read a lot less this year, but I am trying to get my shit together on that. Even if it’s just to challenge myself to get two thousand words written a day, that’s reasonable. Others would say to start at a page, but I am experienced enough to know I can accomplish the higher word/page count. There will be days when I double, triple, or quadruple on this, and days when a page will be enough. Know yourself, know your limits. It’s not dissimilar to the days when I’ve walked eight miles and it takes me a week to recover. There was a time when I wouldn’t stop until after dark, but those days are long-gone. Coming to terms with that, with the loss of complete health… It’s not easy. For people to insinuate that anyone enjoys suffering is just plain sad. For them. For the warped mind who dares to go against every doctor you’ve had to struggle through, for every diagnosis you’ve fought for. There’s a special place in hell for people of that nature.
And on that cheerful note, I’m on my way for now. I’ll be back as soon as possible.
Have a good week, everyone.
copyright © 2022 by Lisa Marino & Poison In Lethal Doses, LLC. ALL RIGHTS RESERVED. Poison In Lethal Doses®™ is a registered trademark.
We Need to Talk About Racial Disparities in Migraine Care
This is such an important article, and I had to share it with fellow migraineurs.
Migraine Destruction and Searching For Calm
A brutal migraine began last night, ripping through my skull like a freight train, as I frantically searched for an envelope of documents I have to fill out, not knowing when they are due back. I tore apart all the normal places I keep my documents which require immediate or semi-immediate attention, versus the one’s I file away after they’ve been submitted. It could be anything from health insurance stuff to a letter I wrote to a judge on someone’s behalf. It’s not linear. Because I’ve been a writer for so long, one can only describe my system as, “organized chaos”. I will try getting my shit together this year in terms of paper organization and clothing organization. I made this promise to myself about six months ago and I feel like I’m doing my best. Nothing is perfect, of course. Least of all, me.
Last summer, I focused on the small stuff, which began with makeup organization. I am slowly distancing myself from brand consulting and the beauty industry on a whole. It’s embarrassing, but much like paperwork, it was all accumulating in an insane manner, and the best thing to do was break it all down so I could see precisely what I own. Now I get to short through what can be donated or gifted. I still have a few months to deal with that craziness.
To calm myself down today, despite having to cancel my Telehealth appointment at the last minute because this migraine is unmanageable (Two doses of Ubrelvy and I am still not okay. I didn’t want to be disrespectful of his time via video when I know I’d be doing it in sunglasses, trying not to expel food onto my laptop.), I decided to call the person who needs the documents I can’t find (They didn’t grow legs, but if they’re needed before I locate them, that’s going to be a big issue.). I asked her to send them ASAP. She and I will speak at our appointed time, and hopefully she’ll have gotten my message and sent the forms back out so I can tackle them immediately. Normally, they would not be necessary, but she’s merely an intermediary on this level, so I aim to be respectful and do my due diligence.
There will always be migraines I can function through and others I genuinely can’t. Unfortunately, this makes people assume that chronic migraine isn’t a serious condition. It is. This pain is coming and going, currently taking up residence in my neck. This is the result of too much stress. I am burnt out beyond words and I still have so much I need to do. There’s no want involved in tackling things I have to do; it’s the result of having responsibilities. They must be dealt with. They won’t take a vacation, so I’m stuck doing it all until I can make time to be away.
I mentioned responsibilities for a reason. I had money set aside for a trip to Israel. I was thrilled to plan it after Covid was over. I’m not sitting on a plane for all those hours in a mask. I think I’d drop dead halfway through. No, I’m not being dramatic. Anxiety is very real and lately, I have had struggles at times with keeping myself calm. I am only allowed to wear cloth masks and they don’t always feel safe, plus, they do impede my breathing. Then I took Cat and Kitten to the vet for a checkup and their vaccinations. Cat requires non-emergency surgery. The vet told me how much it would be, and my vacation money was automatically swallowed up. That’s okay; because she needs the medical care and I’d never deny that to her. I’m not a horrible person who would abandon her because she needs a procedure. That’s like abandoning your child because they aren’t perfect. I’ll work twice as hard and when I do get to plan the trip, it’ll be an even better one. Maybe because I’ll be feeling better (G-d, do you listen to me?), or because I will feel less stressed. I might even have more energy to do the things we’d originally planned; much of which involves a ton of walking and climbing. I used to walk like the world was my playground, and now I have to pace myself for every mile I tack on. I thought about asking someone to go with me, but I am SO excited to see my best friend/sister, and feel I should go solo because I don’t want anyone to cut into my time with her, especially since she and I are a tiny team with our own language and just how we treat one another. According to my horoscope and tarot readings, it will be my last solo trip, which is empowering in so many ways because I was encouraged at a very young age not to be afraid to do things by myself. I’ve been flying all my life. Despite the extra security protocols, being searched like I was a terrorist at DFW International, and slightly at Philadelphia International, I am pretty good the second I am packed and mentally in vacation mode. It’s harder to leave my vacations than it is to pack up and go. Countries search you less when you’re leaving, but when you arrive? Be prepared for a potential hold-up. Especially if, like me, you take one suitcase that is predominantly empty, except for an extra pair or two of shoes (I always pack two pairs of sneakers and something fancier. Sometimes I will travel with the nicest pair on, to make room in that second suitcase. I’ll throw in socks and toiletries to make my intentions clear.). I do that to have room for anything I purchase while I’m away. My carryon is generally overloaded, just like my purse. It’s worth it, even though it leaves my shoulders with bruises for two weeks.
As is typical when I’m dehydrated and trying to focus on getting rid of this migraine, and a potential blizzard approaching this weekend, I am going to do my best. I can’t do more than that. I have various pieces in the works and have taken a break from the manuscripts because of how sick I’ve been. Hopefully it’ll pass soon and I will be able to return to that which is best for me.
I cannot express enough how important it is to take care of yourself, even if it means saying no, cancelling plans, etc. I honestly felt awful and apologized to my doctor profusely, but I also know he understands that if I cancel, it’s bad. His office did get back to me to say he had no openings, but that I have appointments booked for next month. Yes, I was well aware of that, and will reach out to him if there’s an issue between now and then.
I swear, January has felt like the past year. I hate it beyond words, and might touch on that in the future, but for now, I’m taking my own advice. Water. Rest. More rest. Then I am going to try tackling my mother’s vegetable soup recipe. I know it by heart, but sometimes I’m obsessed with making it perfect. However, it is healthy, comforting, nourishing, and that’s really what I need in my life right now. If I can’t get support from people who are in my life (and some who are about to get nosebleed seats), then I can at least have a huge pot of soup to sustain me. Also, does anyone else need ice cream during a blizzard? Just me? C’est la vie. We’ve all got our priorities and weird cravings.
For everyone in the path of these storms, please stay safe and be well. For those not about to endure it, count your blessings and be well and safe. None of you are alone.
copyright © 2022 by Lisa Marino & Poison In Lethal Doses, LLC. ALL RIGHTS RESERVED.
Poison In Lethal Doses®™ is a registered trademark. Written work by author may not be shared or posted anywhere without express written consent from the author. Excerpts and quotes from author material also requires consent.
Genetic overlap between metabolites and migraines
I share this as someone who was supposed go in for treatment this week. Fifteen minutes before I was to leave, I got a phone call letting me know my insurance had denied the coverage (after initially approving it). After three stressful hours on the phone, treatment was approved, but not for the correct day. I’ve had a migraine for over the course of several weeks, and I still have to wait until next week to see my doctor. That’s why I’ve been writing less here. I haven’t been well, or myself. It’s not just my migraines, but you get the gist.
Seeking help with headaches and migraines
Eptinezumab speeds pain, symptom relief from migraine attack
After months of ignoring his migraines, dad, 39, diagnosed with brain tumor
‘There’s a lot of us out there that just can’t even get out of bed’: Living with crippling migraines
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!