Chronic Migraines

Migraine and Headache Awareness Day 2022

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Migraine & Headache Awareness Month

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

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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.

Genetic overlap between metabolites and migraines

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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.

Forks In The Road

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Welcome to all the new readers, and those who’ve been with me for years or months. 🙂 I’m happy to greet you all.

I’ve been working on a piece about racism and my personal experiences with different forms of it, but mostly, I have started to notice just how worn out I am, which lends to me feeling completely useless. I am not sleeping well; and I am trying not to rely on prescription sleep medication because it either doesn’t work or it leaves me with sleep paralysis. I am burnt out, stressed about life and the future, thinking about all of my relationships, etc. I’ve been trying to allow myself the honesty of all of my feelings privately, which hasn’t been helpful, though perhaps I am too close to say if it’s helping or not. I do know there are abysmal highs and lows these days.

I will be taking some brief breaks for the next month or so. I don’t know if they will be obvious or not, but I think it’s necessary and needed. I think it’s time to get my head into some sense of normalcy and keep pushing for betterment. I hope you will all understand the reasoning. I will still be present, but there will be days when I’m not. I hope it’ll be fine, no matter what.

For the month of March, I will be focusing on a few charities in support of Colorectal Cancer and Women’s History Month. I also have my Goddaughter’s tenth birthday approaching. People always say, “You’re way too young to be a Godmother.” I don’t think they understand what an honor it is to be asked to be a part of a child’s life in such a deeply personal way. There is no age requirement or limit involved. It’s an honor and a privilege, and yes, it is also a responsibility. It says something about me, as a person, that people fully trust me with their child.

I will do my best not to be too “out of it” here, but will also do my best to rally. For now, though, this picture near a local trail says it all. I’m walking towards the color, because everything else feels too harming and bleak.

Wishing you all a peaceful week. Bright Blessings.

I’ve Built…

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It has always been important to me to be transparent about my shortcomings and the strengths. I don’t try to pretty anything up. Too often, people pretend their lives are so perfect online, with perfectly posed, edited photos, but you never see the truth of what goes on behind closed doors because all they care about is the imagery. That’s not what attracts me to people or to their work. Honesty and humor attract me. Real humor; the kind that isn’t forced, that isn’t passive aggressive, the kind that is wholly natural. It takes a lot to make me laugh. In the past week or so, I’ve maybe laughed four times. Each time, my cats came to see what was going on. “Is she having a stroke? Should we get help?”, they probably wondered. Of late, laughter hasn’t exactly flowed.

As an extremely private person, I still know that being forthcoming about my suffering (From A to Z) has helped others get help, come out of their shells, talk, trust again… I know this because they have e-mailed, messaged, and shared these facts with me, even if it took them a few years to say anything. I didn’t know my voice would help people, but it has and it will continue to do so, because I know the power of using your voice for change.

Wishing you all a safe, warm, stress-free weekend.

P.S. I will be listing charities ASAP who are helping out with the crisis in Texas. Every penny helps. It took our government way too long to respond to the need for help, and our own people were forced to endure this without an immediate helping hand. It’s disgusting beyond words. It’s Puerto Rico and Hurricane Katrina all over again, and it is NOT acceptable.

I know people who are 6-7 days without power and who have no clean water. Power is being restored slowly, and many are afraid of what will happen when they return to their homes. Will the pipes have burst (A much more common occurrence in colder climates.)? Will they be able to return home safely? They have no idea what they’re walking into. They are NOT prepared for the kind of weather they got. Never again should states be lacking a strong electrical grid, not have adequate salt, sand, and plows for snow removal, etc. This is not being discussed enough! I’ll do my part and hopefully there can be some unity in this country to help where needed.

October

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This is my favorite season and favorite time of year, but after an emotional, rage-filled moment yesterday, I am questioning EVERYTHING in my life.

To be fair to myself, I reacted via a triggering comment made to me, and new medication that, without my knowing in advance, causes people to occasionally react in a volatile fashion. I’ve stopped the medication, obviously. I don’t ever want to be the type of person who uses her medication as an excuse not to behave properly. That’s unacceptable to me. It’s going to take a week or so to get it fully out of my system, which isn’t a common issue for others, but apparently, for me, it builds up. For most people, it it out of their system within 12-24 hours. I am feeling is gradually leave, but nowhere near fast enough. 😦

I never ask my doctor about trying new medication unless things are bad. This was “new to me” medication, and I should have done extensive research before taking my first capsule. I openly admit to feeling stupid, but relieved that I quickly found the info and said, “I can’t do this anymore.” I had JUST spoken to him yesterday about the drug and was trying to tough it out past the side effects, but that one moment was one moment too many.

When you’re suffering and working solo on your pain/trauma/harm, anything can resurface and cause you to react. That’s what life has been like for me for the past few years, but I haven’t mentioned it. I’ve tried to cope silently, and in turn, I’ve retraumatized myself in several different ways. It is sad and upsetting, and I wish I had the energy to discuss it at length, but I don’t. I feel empty because this is an exhausting process. It’s made worse by no one asking how you’re doing or reaching out to you out of any kind of genuine concern or love for you, which I find SO insulting.

In times like this, I take a huge step back from people. I stop reaching out to them because, quite frankly, enough is enough. The world doesn’t revolve around others who have zero interest in doing the same for you. At the start of quarantine, I reached out to all of my friends to make sure everyone was doing okay, and I let damn near everyone know I was available if they needed to talk. I was mostly ignored. And then, at the end of July, my cousin passed away from terminal lung cancer. I reached out to two of her children, with whom I have solid relationships with, but I know they will call or text if they are having a rough time. They have their support systems. I do not.

I don’t speak to 96% of my blood relatives, and I have my reasons. If you have to find out that your Aunt passed away by finding her obituary online (after not being able to reach her by phone), that is a testament to how your cousins actually feel about you. My father’s side of the family baffles me. My mother’s side isn’t much better, but at least a few people value me enough to maintain a relationship of some kind. One of my cousins is sending me distantly related cousins via Facebook because she uploaded her DNA onto 23andMe and located people this way. If I wanted to upload my DNA to find family, I would do it myself. The truth is, I have enough distant relatives to last a lifetime and no deep-seeded need to “connect” with people I don’t know at this stage in my life. Especially with people in their 70s, 80s, 90s, etc. Let them live and be well, but I would much prefer a few peers. I don’t want conversations about who died, and when. Hard pass.

So yeah, I am struggling. I am suffering. I’m in a dark place. I am usually on a telehealth appointment once a week with my doctor, and despite writing and doing research for various projects I have in the works, I feel like I am mostly achieving nothing at all.

I am either asleep or not sleeping at all. I am in a lot of pain, so I have extremely limited what I do and where I go. After getting sick last month for a while (and having my symptoms suddenly disappear), I wonder if I need to be tested for Covid. It’s hard to tell if my cough is “just allergies”. I might have a minor cold, but it’s the feverish feeling with no fever and insane chills, that make me worry. Yes, this could be a major Fibromyalgia flare-up, or something valid. Unfortunately, when I did call my doctor’s office about this, they weren’t the least bit concerned. The fact that a persistent cough makes me feel like there’s eucalyptus living inside my chest was of zero concern to them, but they thought they were doing me a favor by letting me know I could go and get tested, and they’d fax a request in wherever I decided to go. Instead, I called a local Urgent Care and they said, “Just come in. We don’t need a note or prescription from your doctor, and it’s covered by your insurance.” There’s also free testing being done in the area, so I’m covered if I do need to go. My insurance has called, texted, and sent letters to let me know any testing or treatment will be 100% covered. If I go, I will verify it over the phone, just to be on the safe side of potentially receiving an astronomical bill.

As it begins to dip into the 40s and 50s here, my entire body feels like someone poured -30 degree blood into my veins. Even if it’s 70 degrees outside, I am bundled up like it’s about to snow. I can’t seem to shake the chill. And yet, this could just be my new normal. 😦 I will not know until Spring, pretty much.

Here’s hoping some of this lifts for me and I am able to enjoy the Fall version of October. Realistically, I’m not holding my breath.

copyright © 2020 by Lisa Marino & Poison In Lethal Doses, LLC. ALL RIGHTS RESERVED.

Chronic Pain Awareness Month: Part II

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I had x-rays done of half my body over the weekend. My results show nothing new (The radiologist was able to compare two to previous x-rays from 2018 and 2019.), and they completely denounce a phone diagnosis from late May; a diagnosis I did not believe for a second.

Even with natural pain remedies at hand, I’m suffering. They wear off so suddenly, you have no time to regroup. Despite having a prescription on hand, I haven’t touched it other than to verify the count. 😦 The deeper reality is: I have no idea when or if I will be prescribed pain medication again. I’m not “stocking up”, but I am saving them for “the worst”. The worst can be at a moment’s notice, tomorrow, or a week from now. It can be so sudden, so I am trying to be prepared.

My doctor is inconsistent regarding treatment methods, and he is out of the office this week. I sent him a brief e-mail letting him know I’d discuss this with him when he is back in the office.

Reading the x-rays was upsetting. Slight changes in the cervical spine, where I’ve already been diagnosed with arthritis. Slight changes to lower lumbar spine, where I was hit in the lower back in January of 2019. The radiologist recommended additional imaging and tests to rule certain things out. My doctor e-mailed a reply and glossed over this completely. He tried to say I have a pinched nerve; which did NOT show up on the x-rays. I came away angry, because if you’re going to make a claim like that, I want imagine to show I have it. I don’t want to be told I should, “Have a nerve block performed.” Where would it go?!

I’m tired. Tired of suffering. Tired of being in pain. Tired of the isolation. Tired of not being able to talk to too many people. And tired of the media hyping up ADDICTION in order to punish patients who suffer from chronic pain. I’m a patient. I have never used heroin, cocaine, illegal Fentanyl, ecstasy, you get the drift. I’ve never been attached to drugs; regardless of their status. But I do believe the DEA needs to get the fuck away from doctors and mind their own damn business regarding how patients are treated in terms of access to medication.

Every single day, I worry if I will be a device victim. Someone who is told, “We can put a pain pump in and refill it each month.”, in order to restore me to 25-50% quality of life. There are other things one has to worry about when a device is installed into their body; like leakage. I know people who’ve nearly died and had to sue the device company over the medication overdosing them, or not dosing them properly at all. Devices aren’t an exact science, despite what they will all have you believe. Their safety comes into question, and I know a lot of people with spinal cord stimulators who are waiting to have them removed because the device completely failed them. They are marketed as the “answer”. They are not.

I keep hoping for the right doctors, but today, I feel dejected.

Essential Appointments

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Today, I went to an essential appointment with my headache specialist. Not surprisingly, she acted like nothing ever happened via phone between us.

This month is my two year mark as one of her patients, and aside from a few appointments where she actually knew my name, and my medical reasons for seeing her, this time she changed my name entirely. Say hello to Mary, everyone. 😂 I’ve been called worse, really. 🙄

The waiting room was predominantly empty, and no one can hear you speak  clearly with a mask on, so I said, “I know you mean me, but that’s not my name.” I had to repeat myself three times. When she went into the system to double check, she wondered out loud, “How the hell did I come up with Mary?” Good question, but I was there for medical treatment, it was not a social call. She put a note in my chart to remember my name for when I go back in early August. 😒

I mostly said yes to her incessant questions. With strict Covid-19 precautions in place, “Yes.” seemed like a great answer to help speed up the 20-30 minute procedure. I was polite, I listened, but I was also astounded that she asked how my migraines have been these past few months, especially since we JUST had that conversation where I was basically begging for alternatives for when a treatment method fails and I’m left suffering. This plea was treated with disrespect and disdain. That sorry excuse for a conversation was not acceptable, but I learned from day one to discuss those matters during follow-up appointments only. Otherwise, she becomes mentally distracted. You do NOT want a doctor distracted when the treatment process requires one hundred and ten percent of someone’s concentration.

I already had a migraine going in to this appointment, so I immediately went to the only place open that serves coffee (I miss you, Starbucks. That’s sad, given the full weight of what’s going on in this world. But hey, I’m human. I love their Iced Green Tea Lemonade and their Passion Tango Lemonade Iced Tea. The former is caffeinated a bit, the latter is herbal. I have gift cards saved to their app. I wouldn’t normally go there, otherwise, but I digress.) for Cold Brew. I was craving it for four days straight. They were out of both versions, so I ordered iced coffee with a shot of vanilla instead. I then proceeded to try making it as light as possible, while adding the correct amount of sugar so it would be lightly sweet. Ordering coffee after noon on most days isn’t a good idea to begin with. I haven’t had coffee in almost a full two years. I gave it up cold turkey because my medication, at the time, required it. No problem. I can give up high dose caffeine. I know most people can’t, but it wasn’t a hardship. I was still drinking iced green tea on occasion once I got the hang of the medication, and when I was unable to find the decaffeinated version, I would still drink full strength Earl Grey on cold mornings (I use a huge mug and two tea bags. I take my tea pretty seriously.). Otherwise, I was drinking my usual water and iced herbal tea. Repetitive boredom, but we do what’s good for us. Or at least, I try my best to do so.

Turns out, I’m still finding coffee incredibly disgusting. Three sips and I was so nauseous, I contemplated whether or not I needed to take Promethazine. I wanted the caffeine to help my migraine, but right now, only ice cold Coke Zero or Pepsi does the trick. When either one tastes REALLY good to me, the caffeine will help considerably. Under normal circumstances, I don’t touch the stuff.

The artificial sweetener most widely used is a neurotoxin. It hasn’t been researched enough regarding the long-term effects on the human body. However, many people are often misdiagnosed with severe neurological or pain disorders when what they REALLY have is Aspartame poisoning. Too often, you aren’t asked about your diet or what you drink, other than alcohol, so I can only wonder how many people are drinking this stuff daily, in one form or another, and making their health worse. I’m pretty good about eliminating things and not looking back.

I cut all of these things out when I was first diagnosed with migraines. There’s a long list that you have to eliminate to see if they are triggers. You can slowly bring things back into your diet, providing they don’t make you sick. I have researched the fact that this sweetener causes insane amounts of inflammation in the body. Even twenty ounces can set you back if your body was trying to heal itself. Unfortunately, the sugar in the regular versions is way too much. I’m a purist; I will use real butter, heavy cream, real sugar, etc., when making specific things for myself, family, and friends. While my taste buds can easily tell good from bad, sometimes you’ll do anything for relief. That’s how bad my migraines have been.

Upon returning from my appointment, my head pain was moving into my neck and I was MISERABLE. I am used to this, sadly. I know it takes a few days or two weeks to start feeling better. Hopefully I can get there quickly because the pain turned into a full-blown flare up, and I can barely think straight. Sleep would be great, but isn’t likely to happen at the moment. 😔

I’ll be recovering from this treatment, but I’ll still be around to share bits and bobs. 😉

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

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