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.

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.

facebook_1589262102637_6665848394141741518

 

 

 

 

New Nerve Drugs May Finally Prevent Migraine Headaches

New Nerve Drugs May Finally Prevent Migraine Headaches

New Topical Migraine Gel Shows Promising Results in Trial

New Topical Migraine Gel Shows Promising Results in Trial

I’d take this a little more seriously if the photo didn’t look like my moisturizer.

Insomnia & Painsomnia: A Wicked Combination

bednow

Whenever there’s something stressful going on in my life, it often affects my sleep, thus turning me into a shadow of my former self. Insomniac Lisa and Painsomnia Lisa are two very different beasts from the person I am when I’m able to prioritize sleep, and actually get into bed each night at a decent hour. I’m never 100% pain-free, but sleep is a crucial part of how my body recovers from what I do to it each day. I have worked my ass off this past month and lost roughly 20 pounds, somehow managing to strengthen my upper back muscles in the process.

Unfortunately for the past month, my sleep has been insanely erratic. First it was major moving stress, liable to affect even the calmest person in the world, of which I openly admit is not me. Then it was my brother’s pre-hospitalization health, closely followed by getting the phone call that he would need open-heart surgery or a transplant. It’s normal to have things like that affect you on many levels health-wise. Let’s face facts: No one expects someone young to be told that their heart is at 11% capacity. An entire team of doctors and surgeons and two different hospitals told him he was 10-15 years too early for such a severe issue. All of this crap has been screwing with me day and night and thus far, nothing I’ve done is helping. To add insult to injury, I have had a migraine since the day before Thanksgiving. I currently feel as if my head is in its very own torture chamber, taking my body along for the ride. 😦

When my brother was first released from the hospital, my sleep schedule had already shifted due to late-night texting and phone calls when he was still hospitalized and feeling lonely late at night, before his final dose of pain meds took over. There were many times I had to suggest he watch something on TV (“It’s almost 10 PM, here are three shows you can watch tonight. I have GOT to get some sleep!”), and then mute the ringer on my phone as opposed to allowing it to vibrate, so I could go to bed without the phone buzzing for hours. Now he’s here 24/7, and he’s driving me insane.

He’s not doing anything in particular to make me crazy (though I wish he’d remember that his legs are fine and he can get up and pour his own damn drinks!), he just happens to be in my personal space, and I crave privacy and silence. He’s mortified that I disinfected the remote, but since I don’t want him getting sick and he’s using it and I’m using it as well, I figured it was a wise decision. It is cold & flu season and while he is currently not in contact with other people several days a week, I am, and that can pose a problem for him if I bring something into the house that I did not leave with.

The other night he fell asleep while I was talking to him (I wasn’t boring him, he was simply in a lot of pain.). It was super early, but I felt that was the perfect time to cover him with a few extra blankets (It’s cold here most nights, and even when it’s not, he’s complaining that he’s cold.), and sneak off into the silence that is my normal routine. Alas, he got about three hours of sleep and I was wide awake. The second I thought about going to sleep, he was moaning in pain and when I checked on him, he was messaging someone on his tablet, with the TV on lighting up three rooms.

After a highly stressful week, I was finally in bed at a decent hour last night. As soon as I’d dispensed the last pain pill of the day, my head was on the pillow. Unfortunately, the previously aforementioned migraine decided to kick things up a notch and a little after 2:00 a.m., I woke up in unimaginable pain. I have no idea how I am attempting to type this, much less see.

My first line of defense is to attempt to get some caffeine into my system. It’s the only thing I haven’t sought out or used to treat this particular pain level, when it would normally be something I thought about a bit more closely. No, last night I was too far gone, so I took something less targeted that, as a last resort, often helps. Clearly it only helped part of me. 😦 So, I am nursing caffeinated tea and I took two Excedrin Tension Headache capsules. Not because I have a tension headache as opposed to a migraine, I know the difference, but because sometimes that combination works for me and nips the migraine in the bud. It’s not a permanent solution, but nothing really is. If it doesn’t start working in an hour or so, I will take a third.

1601324_1131332816884091_3989658827332551365_n

It astounds people that I have managed to learn how to work through some of my worst migraines, or that I put myself into the head space to focus on healing one. I look at it this way: I am not going out and triggering the headache to be any worse than it already is. I am home, I’m safe, I can control the environment (noise level, light, temperature), and I know not to move around too much, but can I sit at a darkened laptop screen and talk about it? Sometimes, yes. That doesn’t diminish the intensity of the migraine, it does not mean I don’t suffer from migraines (three neurologists and two other doctors are all in agreement that I suffer from migraines. They have gotten worse since my first diagnosis, so there’s nothing else it could be. Everything else has been ruled out.), and it also doesn’t mean it’s “just a headache”. On occasion, like most sufferers, I will get a dull headache. Unfortunately, dull can go to extremes pretty quickly, so I take all headache forms seriously. I don’t walk around denouncing other people’s pain either. If a person says they have a headache, but quickly says “I don’t get migraines like you do.”, I still wouldn’t tell them it was “no big deal”. Pain is pain. No one likes it and for those of us that endure it 24/7, I have seen people empathize with others openly, and I have also seen people blow off the pain of others because they somehow feel it is their right in life to be the one person on the planet who has it far worse than the rest of us. Sorry, but that couldn’t possibly be true, or you’d be dead. What may be indeed true is that everyone’s threshold for pain is different. In fact, I know this to be true.

In studies, it has been determined that women tolerate pain differently from their male counterparts. Not better, not worse, just different. Taking into consideration that the female body can push out a human-being during the process of giving birth, that’s not an immense surprise to me.

All of my heavily tattooed male friends had their jaws on the floor when I sat through my first four tattoos and described the pain as “No worse than a cat scratch.” You see, I chose a spot that most of them found to be extremely painful. They all told me to put my ink somewhere else, that the pain would be too much for me to endure, especially considering I suffer from Fibromyalgia, but I’d consulted with several artists who, like me, believed that my first tattoo should be someplace easily covered up with clothing. However, never to do things the simple way, I got my first four all at the same time. I wouldn’t even rate that a one on my personal pain scale. I’ve had more painful piercings.

As many of you also suffer from migraines, has anyone gotten a Daith piercing to try to combat them? Compared to all the medication, a myriad of supplements that may or may not be useful to the individual, various treatment methods, Botox, acupuncture, etc., the piercing itself, depending on where one goes, is between $50-$100. I am being told that it works for 50% of the people who get it, but I am also being told the relief is temporary, though some people are reporting themselves migraine-free 3-7 years post-piercing. I have decided to try acupuncture for a year to see if that spot along either of my ears responds to treatment. My insurance covers it, which is rare, so I am going to take the opportunity to use it first. I’m not sure I need another hole in my head, but I’d be interested in hearing whether or not the piercing has helped anyone. If you’re considering getting this particular piercing, please go somewhere highly reputable and have someone experienced do the piercing itself. The report of infection with this spot is very high, and I’d hate for anyone to go through that. I’ve only had three piercings in my life that gave me problems. Luckily they never got infected, but two of them bled for years if someone hugged me too hard, and the third still gives me problems on occasion (The fact that I share the piercing with a highly toxic person is probably why… I’m a big believer in energy. Sometimes we are healthier overall without certain people in our lives.). While most piercings are mainly decorative, there is no medical or scientific evidence that a Daith piercing is a cure for migraines, so don’t read into all of the Pinterest and Instagram “science”. Those are exclusively individual experiences, most of which are brand new. There’s no way of knowing what the long-term effects may be. For many, it is worth it for temporary relief. I’d rather explore a few additional options first.

imverypicky

Are there any alternative treatment methods that work best for your migraines? If so, what are they?

The day insomnia can be cured in any way, shape, or form, I will be on a line for that! Right next to the line for the great Fibro/Chronic Pain cure. Here’s hoping we see it in this lifetime.

copyright © 2015 by Lisa Marino & Blackbird Serenity LLC. ALL RIGHTS RESERVED.