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    Alex Tomlinson

    What Sensory Overload Feels Like During a Migraine

    Once upon a time… Who am I kidding. Let me start over. Most of the time in a land controlled by migraine… Welcome to the world I like to call sensory overload. It hit me the other day that even though everyone understands what “senses” are, and everyone understands the concept of being overloaded, overworked or stressed, no one can quite sense what sensory overload really is. So, I wanted to break it down, sense by sense, to give you a sense of my senses. Yes I am intentionally reusing the word over and over because it only makes sense. 1. Sight Most people can see. If you wear glasses, the first part of sensory overload in reference to sight may actually be really familiar. When a migraine strikes or gets too intense, I often really struggle to see. Sometimes its more depth perception related. I can be looking at something, say a page in a novel, and out of no where I can’t make my eyes focus on the words on the page. If I try really hard, sure I can see the words, but I certainly can’t concentrate on them. Then everything gets really hazy. I can’t move my head and if anything in my peripheral moves, it sends sharp signals to my brain (literally), making the throbbing pain intensify. Then there’s the second branch of sight, the sensitivity aspect. Lights. Oh, lights are horrible. The sun is horrible. A screen is horrible. The flashing lights on my internet modem, are horrible. Flashing lights actually are probably the worst, especially if its a florescent overhead light that is flickering as its about to go out, but the damn thing just won’t go out. Headlights are pretty bad too. When it comes to bright lights, they’re impossible to avoid and I’ve slowly become more comfortable with just wearing my sunglasses inside without feeling like I’m being rude. 2. Taste Of all the senses, this is my least favorite one that my migraine likes to screw with the most. No, my food doesn’t taste any different – this only happens if I take a certain medicine combination and happen to just lose taste altogether – my food is just not at all appealing. Even if the nausea hasn’t set in yet, just the thought of eating can make it. Then the idea of eating anything that might have a smell (we’ll get to this one later), or any sort of flavor to it, is quite repulsing. It may be my favorite food in the whole wide world, but if it has real flavor to it, for some reason, I can’t even fathom eating it during a full blown attack. I keep a lot of toast and peanut butter around for when it gets really bad. There’s two reasons this is a great combination. To start, toast with peanut butter is filling enough to tide me over until I’m feeling better to eat more, and secondly, its pretty easy to eat slowly and won’t upset your stomach. However, this issue with taste, leads to other, much larger issues. For instance: my weight. Imagine trying to maintain a healthy weight, when over half of your meals don’t consist of the proper amount of calories and definitely don’t have all the nutrients your body needs. This is why it really makes me cringe when people comment on how lucky I am to be so skinny, or that shopping must be great for me. Like no, actually, I constantly am battling trying to maintain a healthy weight and even this “healthy” weight is much leaner than I ever would want to be. 3. Smell Let me start by saying I would spend every cent I earned if I didn’t have medical expenses on putting the perfume industry out of business. I’ve walked into a bathroom that some lovely lady just left and vomited on the spot because of the intense perfume smell. And perfumes, it isn’t just you. It’s scented lotions as well. Let me tell you, there are some wonderful lotions that rely on essential oils to get their scent. Not only are the natural, but they won’t send people around you rushing to the bathroom to get sick, or rushing home because you just ignorantly triggered an extremely painful migraine. A Then it boils down to the food I’d just love to consume. All the time. Some days the lovely aroma of whatevers cooking will draw me and I’ll be dying to taste it, other days it has the same awful effect of the perfume. And it can be something so simple like the roasting garlic being used to start a dish, or the fresh slow cooker pulled pork when you remove the lid of the crock pot, or the eggs you’re desperately trying to cook while you’re in a rush to attempt to go to school, even though the pain is unbearable. It’s normal foods. It’s normal smells. But when a migraine intensifies, so do your senses, and all of a sudden a regular smell is an absolute no-no, and will, wait for it, probably make you super nauseous. 4. Sound Sound is far the oddest intensification I’ve ever experienced. And this one doesn’t ever really completely go away. I kid you not, my migraine superpower (aside from being the only accurate weatherman) is being able to hear through soundproof walls. Soundproof. They are advertised as soundproof, and I’m the only one that disagrees. My roommates have all thought I was a bit dramatic. Yes, actually I can hear your television through the wall. Yes, I can hear what the characters are saying word for word. Oh, you have it on the lowest setting that you can hear? Gotcha. Sorry. And this intensification for some reason doesn’t stop when the migraine attack does. The hardest part is the intensity of sound during an attack. That clock on the wall? It’s ticking, isn’t it? That clock on the bathroom sink in the next room? It’s ticking. Ticking. Ticking. Ticking. Until the ticking is screaming in my ear, and it doesn’t matter what part of the lecture my professor is on, and it doesn’t matter if I was dead asleep and that the clock is in a whole separate room, the ticking is screaming. The ticking is crawling through my skin. The ticking is pulsing in sync with my head. But now the ticking is speeding up. But that means this pulsating pain is also speeding up. And it won’t stop until I either break the clock, or remove myself from where the clock is. Clocks have the capacity to send me into a full-fledged panic attack. And my ears are always ringing. But I’m going to assume that’s just my enlarged blood vessels pulsating and my odd sense of hearing deciding it wants to have background noise. 5. Touch To start, to anyone who has ever suggested I have an orgasm to cure my migraine, well…I have words for you. Now let me explain why. Let me introduce you to allodynia. This is a side effect of many conditions, especially common for chronic pain or neurological related issues. Allodynia is essentially a term used to describe pain occurring when pain shouldn’t occur, in places pain wouldn’t normally occur. For me, I think of allodynia as if any portion of my body is touched, my migraine will move their until whatever is touching me is removed. This is present usually when a migraine attack has drained on for days and days without any relief from the stabbing pain. I turn the water on in the shower and I can already feel the pain. Yes, partially in conjunction with the sound, but I can anticipate how much it’ll feel like each water droplet is pressing on a bruise that doesn’t exist. Then after my miserable shower, I’m met with the even more agonizing need to brush out my hair. And let me tell you, when every hair follicle radiates pain as you try to brush through your hair, the idea of shaving it all off sounds ideal. I set my soft face mask icepack over my eyes, and gently lay on another cold pack shaped to fit my neck. But the cold doesn’t help the pain. Every point of contact just hurts worse. I can’t push through and let the cold do its job. The soft blanket. The pajamas. Any jewelry. All of it feels like sandpaper on my skin. Now imagine trying to have sex. I can’t brush my hair without crying. My softest clothes are causing agony. And you want me to have an orgasm. Sure let me just touch the “have an instant orgasm button without any physical contact button.” Now do you get the point? When I say sensory overload – this, all of this, all put together in one giant package with a bonus of my brains pressing inward and outward simultaneously– is what I mean. No, I don’t always experience it. Sometimes I experience a few senses being out of whack. Sometimes that’s the way I can tell that I’m about to be hit with some serious pain that will knock me on my ass, sometimes literally. What I hope you get out of my sharing this information and breaking it all down, is a greater sense of awareness. You can’t control my migraine, hell, I can’t either. But you can control how loudly you speak when you’re standing next to me. You can control the amount of perfume you use. You can control how abrupt you are. I know it doesn’t occur to you. It certainly doesn’t occur to doctors who knock on the door as I jump out of my skin because it went from dead silence to abrupt noise. All it takes is awareness, and a more gentle approach. Speak softly when you’re near people, and for Pete’s sake. Don’t bring a beachball to throw around with questions on it to class, my lack of depth perception during an attack can’t handle that. Getty Images by Dziggyfoto

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    Living With Chronic Migraine

    Listen to The Mighty Podcast episode, “Living With Chronic Migraine.” We’ve also provided a transcript below. To talk about the episode or share topic ideas, join the Podcast Peeps community on The Mighty. In this episode, The Mighty Podcast host, Ashley Kristoff, discusses Chronic Migraine with neurologist Dr. Margo Butchee, MD, MPH and “My Crazy Good Life” food blogger, entrepreneur, and Chronic Migraine patient Becca Ludlum. They talk about the challenges of living with the disease, how to find a doctor, and a treatment path that Becca took on her Chronic Migraine journey. This episode of The Mighty Podcast is sponsored by AbbVie. If you prefer to listen to this episode on Apple Podcasts, you can do so here. Links: For product information, including Boxed Warning and Medication Guide: https://bit.ly/39aHtef Check out Becca’s blog, “My Crazy G ood Life”: https://mycrazygoodlife.com/ Podcast Peeps: https://themighty.com/groups/podcastpeeps The Mighty app: http://mgty.co/app Transcript: SPEAKERS Host, Ashley Kristoff; Becca Ludlum; Dr. Margo Butchee, MD, MPH Ashley Kristoff Welcome to The Mighty Podcast where we infuse the health space with positivity, humor and vulnerability. The Mighty is a safe and supportive community here to help you find the people and information you need to navigate your health journey. We’re so excited to spend some time together today. Today’s episode is sponsored by AbbVie and our guests have been compensated for their time today. Now let’s get into what the health we’re talking about today. Today’s episode of The Mighty Podcast is focused on Chronic Migraine. In addition, because we’ll be talking about an FDA approved prescription treatment, BOTOX ® (onabotulinumtoxinA), it’s important to remind you that there are benefits and risks associated with BOTOX ® . BOTOX ® prevents headaches in adults with Chronic Migraine 15 or more headache days a month, each lasting four or more hours. BOTOX ® is not approved for adults with migraine who have 14 or fewer headache days a month. As for important safety information to know about BOTOX ® : Effects of BOTOX ® may spread hours to weeks after injection, causing serious symptoms. Alert your doctor right away as difficulty swallowing, speaking, breathing, eye problems or muscle weakness can be signs of a life-threatening condition. Patients with these conditions before injection are at highest risk. Side effects may include allergic reactions, neck and injection site pain, fatigue and headache. Allergic reactions can include rash, welts, asthma symptoms and dizziness. Don’t receive BOTOX ® if there’s a skin infection. Tell your doctor your medical history, muscle and nerve conditions including ALS/Lou Gehrig’s disease, myasthenia gravis, or Lambert Eaton syndrome and medications including botulinum toxins, as these may increase the risk of serious side effects. We will discuss additional important safety information later during this presentation. And please check out the podcast description directing you to BOTOX ® Prescribing Information including Boxed Warning and Medication Guide. And lastly, this discussion is not intended to provide medical advice or care, so please speak with your healthcare provider if you have any questions about your personal medical condition or disease management. Today’s episode of The Mighty Podcast is focused on Chronic Migraine and BOTOX ® . I’m your host Ashley and I’m just so happy to be joined by Dr. Margo Butchee, a neurologist with Mercy Clinic in Oklahoma City and Becca Ludlum a food blogger running “My Crazy Good Life” blog. Welcome both of you. How are you guys doing today? Dr. Butchee I’m good. Thank you. Thank you for having us. Becca Ludlum Thank you so much. I’m great. Ashley Kristoff Yeah, thank you for being here. So, Dr. Butchee why don’t you tell us a little bit more about yourself. Dr. Butchee So, thank you so much for having me here today and I’m so honored to be part of The Mighty. I am a physician at Mercy Neurology Clinic in Oklahoma City, and I do specialize in treating patients with migraine. And so, I’d also like to share that I come from a long history of migraineurs. Really, this is the main part of what drew me to headache medicine. Also, the meaningful relationships I’m able to develop with my patients in really helping them during their time of greatest need to be there to help them during this critical period is what really drew me to medicine. And outside of being a physician I’m also a mom to three wonderful children. My oldest is Oliver, he’s six years old. Nolan is four years old. And my youngest is Elise, she’s three years old. Outside of practicing medicine, I really enjoy spending any extra time I have with my family. Ashley Kristoff Amazing. I’m so glad we have you here today. And it’s so amazing to hear that like the intersection relationship of lived experience and professional so excited to hear from you. Becca, do you want to tell us a little bit more about you? Becca Ludlum Sure, I’m Becca Ludlum. I live in Tucson, Arizona with my husband and two sons. I’m a food blogger and an entrepreneur. We have several different businesses that we run. My blog is called “My Crazy Good Life.” I started my blog when my boys were young and wrote a lot about raising them in the face of technology and how to parent them. But once they got old enough, they didn’t want me to write about them anymore. So, I was able to switch and write about something that I cared about (not that I didn’t care about them), I was able to write about something that I loved, which is nutrition and food. Healthy living, just kind of focus on a little bit indulgent and mostly healthy. I love reading. I love spending time with my family and friends. I love practicing yoga. I love to go to concerts. My husband and I just started a wood and metal business just during the pandemic and we had some extra time and started making metal rusted trellises and big metal torches and lanterns and we engrave wall signs and cutting boards and those fancy tumblers that you see everywhere on social media. So, we’ve been having a lot of fun. Through all of this I’ve been living with Chronic Migraine for over 20 years. Ashley Kristoff Wow. That’s incredible. Thank you for sharing. Just the breadth of like your metal and wood business just you got “jack of all trades” over here. Becca Ludlum We got a lot of stuff going on. Ashley Kristoff Alright, so let’s get into what Chronic Migraine is and some experiences around treating it and living with it. So, Dr. Butchee, we’re gonna start with you. Many people may know about migraine or maybe have experienced migraine at some point in their lives, but other people might not be so familiar with Chronic Migraine. So, what is the difference? Dr. Butchee So Chronic Migraine really is a complex neurological condition with an array of symptoms. Now specifically, Chronic Migraine is defined as 15 or more headache days a month, with the headaches lasting at least four or more hours. And unfortunately, there are 3.3 million Americans living with Chronic Migraine. So, to put this into perspective, if we place all of these people together in one place, that would constitute for the third largest city in the US. Ashley Kristoff There’s a lot more people living with Chronic Migraine than I even thought. Is the cause of Chronic Migraine known? Dr. Butchee So great question. We’ve made a lot of progress in recent years in understanding the cause of Chronic Migraine. And so, some of the most common causes that we know of include genetics, so half of your risk for developing migraine comes from your family history. So, remember, my mom and even my grandmother, we come from a long family history of migraineurs, so I am more likely to pass this along to my children as well. What you eat, drink can also play a role into your migraines. We know that caffeine, alcohol can trigger migraines, and even certain foods you eat such as foods high in MSG or in nitrates can also trigger migraines, and even skipping meals. Now weather changes, especially if you know I live in Oklahoma where we have a saying that if you don’t like the weather, just wait a few minutes, which is true because our weather can fluctuate wildly. And so, it’s the changes in the humidity, the temperature, air pressure, this can all lead to migraine. And remember, these are the most difficult for our patients to control. You don’t really have any control over how the weather behaves. Changes in sleep can also trigger migraine, whether it be too little sleep, too much sleep, a change in the sleep routine. These can all set up a migraine attack. And last but not least is stress and anxiety. And certainly, this past year has really challenged us as far as stress levels. And we know that this can trigger migraine and even the time period after stress can trigger a migraine. Ashley Kristoff Becca, I am curious to hear about your personal experience with Chronic Migraine. So, what were the first symptoms you experienced and what was that diagnosis journey like? Becca Ludlum My Chronic Migraine journey started literally out of the blue. So, nobody in my family has migraine, Chronic Migraine, I always say it has to start somewhere. I had a really bad headache that I couldn’t get rid of and I started experiencing other symptoms like nausea, sensitivity to light and smell, this constant, well what I know now is migraine, but constant headache that I just didn’t really understand it wouldn’t go away. And at the time of my diagnosis, I was having about 20 headache days per month. My diagnosis journey was not easy. It took a really long time, and I am still, 20 years later, learning more about why I get them and what causes them. First, we tried to rule things out like a brain tumor and optic nerve tumor, other more serious conditions. Made a lot of visits to pain clinics and literally pages of prescription medications that I had tried. I even had a home health nurse that had to come out to the house and administer IV medications to try to break one of the really bad migraines that I had had. For me a headache is something that I can take a few ibuprofen for and it’s gone whereas my migraine is totally different. They’re not all the same for me but most of them feel like a brain freeze, like when you eat ice cream too fast, except it doesn’t go away after a couple minutes. It just stays and not much helps. And so medications don’t usually help. Lying down makes me feel better. Most of the time I just I wait it out is pretty much what I do. Like I said my symptoms aren’t always the same. My migraines are not always the same and so sometimes I have really bad light sensitivity but then like I said earlier, like I love going to concerts so I can go to a concert and sometimes it’s fine. But then there’s other times where I can usually tell earlier in the day if I’m starting to be a little bit sensitive to loud noises or light then I know that’s it, concert’s off, no movies or anything like that. After a couple days of a migraine, I’m super tired. I call it a migraine hangover where I’ve taken some medication, and I’m kind of just trying to work my way back. And so those are also counted as migraine days. Ashley Kristoff That is very relatable. I think our audience who live with migraine and other chronic conditions are very much in tune with what you just said there. So how did you deal with this at the time, like when this was first happening, especially when something’s out of the blue like that, you know, how did that work? Becca Ludlum So it’s taken a long time for me to learn what my triggers are. And so over the years, I’ve slowly learned that I knew if I would eat something that I’m not supposed to eat like foods with nitrates, that was that was one of my first ones, and so I knew that if I could not like, like, I’m just gonna have bacon this morning with my omelet. It’s not a big deal. Knowing, so things like that I could kind of feel like coming on. And so then, you know, eventually you just you don’t do that, right? You learn like, no, it’s not worth it. And so, my coping strategy, besides avoiding things that I’ve noticed trigger migraines, my coping strategy is to just bow out of everything. And so, you know, we’re supposed to have date night, or if we have a family weekend planned, or any kind of outing, any kind of thing that we have, as soon as I feel one coming on, I do not try to power through it. I did for a long time, and it just doesn’t work. So that is my number one thing is as soon as one starts, I’m done. I’m out. And it’s just, it’s not good for anybody if I push through. Ashley Kristoff Yeah, I think it’s so important to have those boundaries and those limits and knowing your body the right way to know how you can move forward so I’m curious about you mentioned, like canceling plans, those sorts of things. So how did the people in your life react to this new diagnosis? Becca Ludlum So, I was at a place in my life where I was meeting a lot of new people. And so that was just me, they just, they knew me, and they knew that you know, and it’s kind of weird, because when you don’t have a migraine, you’re normal and everything looks fine, right? But then when you do, it’s like, that’s it done. But everybody was really good about it. And so, there are things where, you know, I tried to work a traditional job, it just didn’t work. My kids are super empathetic because they grew up seeing me have these. And so, everybody was really, really good about it. My husband has the patience of a saint. He’ll step aside and do anything that needs to be done while I have one to make sure that I don’t feel like I’m losing out or, ‘Oh, you know, I can’t make dinner tonight.’ So, people have been really great about it. Ashley Kristoff I’m so glad you had such supportive people in your life during this time. I am curious to know what people maybe didn’t understand about this experience with Chronic Migraine, or what came up when you were talking with other people? Becca Ludlum I would explain that, you know, I have Chronic Migraine and there’s certain things that I can’t do and unfortunately, I can’t expect when that’s going to happen. And sorry I can’t hang out, go with you, do whatever. People were really good about it. They were really understanding, friends and family both, really understanding. There were a lot of schedule changes that we had, a lot of last-minutes things that were postponed or changed. And thankfully, like I said, everybody’s been great about it. Learning is such an important part of this for me. And so, like I said earlier, 20 years later, I’m still learning what causes these. And I feel too like my body’s changed a little bit over the years. And so even though I learned one thing, well, now things are changing. And so, you know, my exercise routines changed totally. I noticed that one of the things that I loved to do was just causing way too much inflammation in my body and was triggering all these crazy migraines that I would get. And so, I was able to change that around a little bit, you know, without stopping my total exercise routine. My diet has completely changed and so my family’s been so good about that. But you know, slowly I’ve taken things out of my diet. Well now it’s gotten to the point where it’s no meat, no eggs, very limited dairy. And so, these are all things though, that it’s so easy to make that decision to stop. My family’s been really good about that. They’ve been very understanding about not having beef as much as we used to and it’s taken over 20 years, but all of these changes are helping. It’s not just about headache, it’s not something that you can push through and I, like I said, I go to movies, I go to concerts, I go to theme parks and as long as I don’t have migraine symptoms, I’m good. But if I try to do one of those things with a migraine, it’s just not, it doesn’t end well. It ends up with me being miserable, you know in bed somewhere and then usually the people that are with me are feeling bad I’ve learned that, so it’s just not worth it to push through. Ashley Kristoff For sure. Dr. Butchee, you want to give us a little bit more color for how other people might think about migraine and the kind of distinction versus a headache that you know, I think that a lot of people who aren’t familiar are really thinking their migraine is. Dr. Butchee Migraine is so much more than just a headache. It really is an array of symptoms. And that’s what really makes the condition so disabling. And so, in fact, the World Health Organization defines migraine as one of the most disabling illnesses. And it’s comparable to someone with dementia, quadriplegia and even active psychosis. And what’s really unfortunate about this is that some patients wait on average four years before speaking with their physician. So, I really encourage people out there to start keeping a headache diary. Start recording how often you’re having headaches, how long they last, and the severity of the headache and also start charting the symptoms that you have with it. So, you may not realize that all those symptoms may be related to your migraine. So, let your physician know that you’ve missed birthdays, because of your migraines. You’re on vacation and you had to stay back in your hotel. You couldn’t go out to dinner because you had a migraine. And I vividly remember in my childhood, my mom was on the couch the majority of the time because her migraines are so severe. This is the important things that your physician needs to know in order to properly give you a diagnosis. Ashley Kristoff Becca, do you have any other real-life examples that you want to share to just contextualize that a little bit? Becca Ludlum Like, of course, right off the bat, I’m like, give me 10 minutes, I can give you 30 of them. You know, a lot of things that I missed were time with my kids by the pool. Summer was really stressful here for me. We live in Arizona, and so it gets really hot, you know, we have a pool, so they wanted to be outside during the summer. Sometimes it was really hard to [kind of] sit in the pool with them without having [you know] good shade and that was tough. Movie nights, you know, things that involve like bright lights, like that has been one of the things that really, I’ve noticed where it’s like, oh, like I really wanted to take you guys to the movies tonight but it’s just not going to work out. So, let’s do something else. Nights out with friends and family, many date nights that we’ve missed many, you know, dinners with friends. We always make it up at some point, but kind of a bummer when everybody’s all excited to go out and like oh, guys, sorry, I have to cancel. Ashley Kristoff Yeah, I think that makes a lot of sense and I think too that that really drives home Dr. Butchee’s point of just sharing those real-life examples. It helps you be empowered as an individual but also be empowered as a patient to say these things to your doctor to help them understand. So now I am wanting to discuss how you found your current Chronic Migraine doctor, like what types of things did you look for in a doctor? And what was that journey like? Becca Ludlum So, I was referred to my doctor by a friend, but I’ve lived in several different places. What I found is that there are not a ton of migraine specialists in each city. And the ones that you do find usually have a really long waiting list to be able to see them and so I learned from the last move that we made that I need to pre-plan for when I moved there. So, we knew that we were going to move, I made an appointment as soon as we found out that we were going to move so that I was able to not have as long of a wait when I moved and then not have as much of a break in between appointments. And so that was really helpful. But I ended up waiting, it was about six months, to be able to see the doctor but I feel like she really understands me. I really like her approach. She gets migraines as well she has Chronic Migraine so that, it helps, it really helps to know that they understand how you’re feeling. And, you know, while she said, you know, hey, you know, this is what I do for mine. I know that that doesn’t translate. And she was very clear about that too. Just because this works for me, doesn’t mean it works for you. But like, in general, she was like, here’s a path that I took, you know, I started looking at foods that I ate, exercises that I did, ways that I move my body and how all those things and so she really was able, she was in a position where she was able to help me kind of brainstorm, you know, my triggers and what brought on my migraines. And I love that she takes a whole-body approach. She doesn’t just focus on headaches and migraines. She looks at many factors, like I said, like exercise and food and all these different things that could be going on and so I really appreciated that. Ashley Kristoff Yeah, you sound like you have a wonderful doctor. Dr. Butchee, could someone with Chronic Migraine see any neurologist or is there something that they should be looking out for? Dr. Butchee So not all neurologists specialize in headache medicine. So, it really is important that you do your research, find the ones that do. In the US there are neurology practices with headache specialists, and they have more knowledge about treatment options that are available, therapy and lifestyle changes in order to help patients with Chronic Migraine. Ashley Kristoff So, speaking of treatment, let’s get into what that could look like for someone like Becca. Dr. Butchee So, there are two types of treatment when it comes to Chronic Migraine. One is acute and the other is preventive. The goal of acute treatment is to stop the symptoms of a migraine attack after they start. And so, this differs from preventive treatments that can help headaches and migraines before they start. And one preventive treatment option is BOTOX ® for Chronic Migraine. Ashley Kristoff I see and Dr. Butchee could you share any important information our audience should know about BOTOX ® ? Dr. Butchee BOTOX ® prevents headaches in adults with Chronic Migraine 15 or more headache days a month, each lasting four or more hours. BOTOX ® is not approved for adults with migraine who have 14 or fewer headache days a month. Effects of BOTOX ® may spread hours to weeks after injection, causing serious symptoms. Alert your doctor right away as difficulty swallowing, speaking, breathing, eye problems or muscle weakness can be signs of a life-threatening condition. Patients with these conditions before injection are at highest risk. Side effects may include allergic reactions, neck and injection-site pain, fatigue, and headache. Allergic reactions can include rash, welts, asthma symptoms, & dizziness. Don’t receive BOTOX ® if there’s a skin infection. Tell your doctor your medical history, muscle or nerve conditions (including ALS/Lou Gehrig’s disease, myasthenia gravis, or Lambert-Eaton syndrome), & medications, including botulinum toxins, as these may increase the risk of serious side effects. Ashley Kristoff Thank you, Dr. Butchee for sharing that important information with our community. So now Becca, you actually use BOTOX ® for Chronic Migraine. So, when did you first find out about this as a treatment option? Becca Ludlum I actually found out about this as a treatment option a long time ago. My grandfather is actually the person who first told me about BOTOX ® for Chronic Migraine. Years ago, he followed the news that BOTOX ® was approved by the FDA for preventive treatment of Chronic Migraine and would often send me newspaper articles about it. And initially, I resisted a bit because I was unsure of exactly what it was and how it would work. But it seemed like he knew it was what was good for me before, before I did. Ashley Kristoff Yeah, what made you, you know, decide to do it and try it? Becca Ludlum About six years ago, I decided to look into BOTOX ® for a few different reasons. So, my headache and migraine days were getting a little out of control. I was feeling really overwhelmed and tired of trying different medications and not meeting my treatment goals. And so, my neurologist suggested BOTOX ® and explained the benefits and risks with treatment. Since she’s also a Chronic Migraine patient, she let me know that she received BOTOX ® injections for her Chronic Migraine, and it reduced the number of headache and migraine days she had experienced. I remember her saying to me, we finally got your medication stable and you’re not meeting your treatment goals that we set. And so, let’s try this and see what happens. Ashley Kristoff Yeah, I think that makes total sense. Dr. Butchee, can you talk about what treatment with BOTOX ® actually looks like for people with Chronic Migraine? Dr. Butchee BOTOX ® for Chronic Migraine is administered in 31 different injection sites across seven head-neck muscle areas that may be associated with migraine. So, BOTOX ® prevents on average, eight to nine headache days and migraine, probable migraine days a month versus six to seven for placebo. So, two rounds of treatment are needed to feel the full effects at 24 weeks. So, I know injections can be intimidating for some and the experience is different for everyone. Becca, can you describe your experience with BOTOX ® for Chronic Migraine? Becca Ludlum I started feeling results about four weeks after the first treatment. And so just like you mentioned, two rounds of treatment are needed to feel the full effect at 24 weeks. But I started to notice some differences right around the four-week mark. Ashley Kristoff Yeah, I just need to pause for a second because Dr. Butchee mentioned 31 injections. What were your thoughts about that many shots? Becca Ludlum Everybody’s experience may be different but for me the injection felt like a small pinch or prick. I am no fan of needles, but it’s not nearly as painful as a migraine attack and so that’s what I think every single time one goes into my head I’m like, it’s not as bad as a migraine. It’s not as bad as a migraine, 31 times. It took about 10 minutes for my doctor to administer the injections and she took as many breaks in between as I needed, and she knows which one’s kind of caused me to tense up and she’ll stop for a second and tell me like let me know when you’re ready. There is no downtime, so I get it at my doctor’s office, I’m able to leave, I’m able to drive home and I’m good. I’m just able to go home and resume my day. Ashley Kristoff So, what do you think about life with Chronic Migraine now that you have a reduction in headache and migraine days? Becca Ludlum I’m so glad that I’ve managed to find and build a relationship with a great doctor who has been part of my care team. And I’ve found an effective treatment for my Chronic Migraine that I never really believed was possible. And I can’t lie a big part of me wishes that I hadn’t waited so long to pursue more treatment options. Ashley Kristoff That makes sense. Dr. Butchee, can you tell us what side effects our audience should know about BOTOX ® for Chronic Migraine? Dr. Butchee The most common side effects of BOTOX ® for Chronic Migraine are neck pain and headache. There are other side effects that also occurred in the Chronic Migraine clinical trials. This does not cover all the possible serious side effects of BOTOX ® so it’s important that patients speak to their doctor about the Important Safety Information about BOTOX ® and the BOTOX ® Prescribing Information. Ashley Kristoff Dr. Butchee I bet a lot of people have some of those same questions and concerns that Becca had. What do you say to someone who is looking to get ahead of their Chronic Migraine  and try BOTOX ® ? Dr. Butchee So, first and foremost, you need to be diagnosed with Chronic Migraine. So, I encourage people to keep a headache diary and bring this along with you when you see your physician. This will really help identify patterns, make a correct diagnosis and really help move forward with the correct treatment plan that’s right for you. Secondly, people should understand that BOTOX ® for Chronic Migraine is around a 10-minute procedure every three months. As I said there are 31 injections in seven different areas of the head and neck. These are the areas that may be associated with migraine. I know most people are no fan of needles, you may feel mild discomfort and injections feel like tiny pinches or pinpricks. And my patients by and large tell me that it hurts far less than a migraine attack. And thirdly, I know a lot of people are concerned about cost, you can ask your doctor or their front office staff about any patient savings programs that may be available that can help with the out-of-pocket costs. Ashley Kristoff What would you like folks to know who are considering trying BOTOX ® treatment for Chronic Migraine? Dr. Butchee So, a survey of 71 people show that 97% of BOTOX ® patients plan to keep using it and 92% wish that they had talked to their doctor and started treatment sooner. So really, I hope this information along with Becca’s experience gives your listeners the motivation to talk to their health care provider and to see if BOTOX ® might be the right treatment for them. Ashley Kristoff Great and Dr. Butchee what is something that potential patients might not know about BOTOX ® for Chronic Migraine? Dr. Butchee So, samples may be available for new patients to evaluate efficacy and safety. And this can be a really helpful way for patients to get started and see if the treatment might work for them. It’s an opportunity for patients to see if BOTOX ® is right for them, and also an opportunity for them to start BOTOX ® treatments sooner. Ashley Kristoff I think that’s really great. I’m sure that goes such a long way in like demystifying the experience and making people feel comfortable with trying this treatment. So, Becca, I know you’ve got a lot on your plate with your family and your business in the food blogging world. What made you want to speak out about living with Chronic Migraine and how can other people start? Becca Ludlum I share health and wellness information as it comes up with my readers on “My Crazy Good Life.” I shared one day about my BOTOX ® injections and had a ton of questions so I wrote an article on my blog titled “Why I Use BOTOX ® for Chronic Migraine.” My blog focuses on using minimally processed foods to make delicious and nutritious recipes, which just happens to go right in line with, like the reason that I use those ingredients is to help avoid migraines. And so, I’m always happy to share my experiences with readers and others in my community. I’ve learned from others over the years, and I will always share my experiences so others can learn from me as well. You can support loved ones with Chronic Migraine by listening and offering to help whether that means cooking, taking kids to events or just sitting with someone. Everyone’s experiences are so different, and I think that talking with your doctor and learning more are the best ways to empower yourself. Ashley Kristoff Well, thank you for sharing so much about your experience and your journey. I think just giving people a place to start sometimes when they hear about this diagnosis is such a great place. So, having all of these learnings that you’ve had in your life I’m sure is such a helpful way for new and people who have been around the block to help figure out new ideas and new things that might work and help them in their management. Dr. Butchee, what advice do you have for somebody who is looking for a doctor? Dr. Butchee So as Becca and I have said before, remember that not all doctors are trained to treat headache disorders like Chronic Migraine. So, it’s really important that you do your research to find a physician that is dedicated to treating Chronic Migraine. And this is really important because the diagnosis is key in order to get the right treatment. A great resource to use would be BOTOX ® ChronicMigraine.com. And you can select your location and see if there is a healthcare provider close to you that treats Chronic Migraine. Ashley Kristoff Thank you for sharing that. Becca, what would you say to somebody who is kind of in the same position that you were in a few years ago dealing with Chronic Migraine? Becca Ludlum There are a few things that I’d say. One of them is don’t suffer in silence because help is available. Bring a headache journal with detailed information about the weather, your daily activities and what you eat and drink. Even something that maybe seems small and not important to you might be something that just glares to your doctor. Ask questions and if you feel that something doesn’t apply to you, or that they’re not understanding you, make sure that you clarify yourself so that your doctor understands exactly what you’re feeling and when. The faster you seek help, the faster you’ll be able to get on a treatment plan that could reduce your number of headache and migraine days per month. I’d say don’t get discouraged if your initial treatments don’t get you to your full treatment goals. Every person’s body is different and there is no one size fits all solution. Take the time to look into different options that are out there, you may have to change your treatment plan to come up with what will work for you. Ashley Kristoff I think that is wonderful advice to give the community. So now we are at the point in our podcast where we like to do this thing called self-care corner and we like to talk about self-care that has fulfilling us or helping us recently. So, do either of you want to go first and share? Maybe Becca, some of your current self-care go-tos? Becca Ludlum Sure. So, what used to be my daily exercise goal is now just a goal for overall self-care. So sometimes it means that I work out, sometimes it’s taking a yoga class or meditating and sometimes on the really crazy busy days, it’s setting time aside to make my favorite dinner. It’s all about being flexible and understanding that my needs can change every day. Ashley Kristoff I love that. Dr. Butchee do you want to share your self-care? Dr. Butchee My self-care is making sure I devote time to spend with my loved ones. And I’m so blessed to have this with my husband Ryan, and my three children, Oliver, Nolan and Elise. Self-care means making sure that you give yourself time to nourish and recharge your mind, your body and your soul. And it’s important that you choose who you spend time with. You really want to make sure that you spend time with the right people because your time is valuable. So, I encourage you to seek people who uplift you, people who inspire you to be better every day and people who challenge you to grow. When I spend time with my loved ones, and I know this is very hard and I’m still working on it myself, but I really do my best to be 100% present, and put that cell phone away. And so, self-care for me really is spending time with my loved ones. Ashley Kristoff Thanks for sharing. I love that. And I love that you say to that it is a little bit hard to do some of these things. And self-care isn’t always pretty and easy, so I just appreciate that honesty here. Recently, my self-care is I’m a very creative person so something that I wanted to try is just something new. So, I actually took my hand at costume making, and it’s been a really, really fun time. It’s really challenged me, and it’s forced me to really spend that time with myself as well. So, it’s been just a wonderful activity. Ashley Kristoff So, let’s share our final thoughts to wrap everything up here. So, are there any thoughts or resources that either of you would like to share about Chronic Migraine with The Mighty community Becca, do you want to start? Becca Ludlum Of course, I’d of course talk to your doctor and visit BOTOX ® ChronicMigraine.com for more information. And if you’re looking for delicious and healthy recipes, you can find recipes that I create over at MyCrazyGoodLife.com. Ashley Kristoff Love that I’ll have to check those out. Dr. Butchee, do you have any resources to share? Dr. Butchee I encourage people with Chronic Migraine to check out one of the many advocacy organizations online. There are great educational resources and opportunities to connect with patients in your local community who also live with Chronic Migraine. Ashley Kristoff That’s awesome. All right. Thank you for sharing. Becca, Dr. Butchee, I just want to thank you both for being here today to shed some light on Chronic Migraine for our listeners. Dr. Butchee Thank you for having us. Becca Ludlum Thank you so much for having us. Ashley Kristoff Yeah, thank you so much for sharing your perspective, your experiences. It’s just really wonderful and I really hope our community takes a lot away from this talk. So, thank you again for listening to this episode of The Mighty Podcast. If you want to continue this conversation, head over to TheMighty.com or download The Mighty app to become part of our community. Thank you to AbbVie for sponsoring this episode. We’d love for you to give us a rating and review on Apple Podcasts, follow us on Spotify or if you’re listening on The Mighty give this page a heart. Join us on our next episode and stay Mighty. Please stay tuned for more Important Safety Information about BOTOX ® . BOTOX ® ( onabotulinumtoxinA) Important Information Indication BOTOX ® is a prescription medicine that is injected to prevent headaches in adults with chronic migraine who have 15 or more days each month with headache lasting four or more hours each day in people 18 years or older. It is not known whether BOTOX ® is safe and effective to prevent headaches in patients with migraine who have 14 or fewer headache days each month (episodic migraine). IMPORTANT SAFETY INFORMATION . BOTOX ® may cause serious side effects that can be life threatening. Get medical help right away if you have any of these problems anytime, hours to weeks after injection of BOTOX ® : Problems swallowing, speaking or breathing, due to weakening of associated muscles can be severe and result in loss of life. You are at the highest risk if these problems are pre-existing before injection. Swallowing problems may last for several months Spread of toxin effects. The effect of botulinum toxin may affect areas away from the injection site and cause serious symptoms including loss of strength and all over muscle weakness, double vision, blurred vision and drooping eyelids, hoarseness or change or loss of voice, trouble saying words clearly, loss of bladder control, trouble breathing and trouble swallowing There has not been a confirmed serious case of spread of toxin effect away from the injection site when BOTOX ® has been used at the recommended dose to treat chronic migraine. BOTOX ® may cause loss of strength or general muscle weakness, vision problems or dizziness within hours to weeks of taking BOTOX ® . If this happens do not drive a car, operate machinery or do other dangerous activities. Do not receive B OTOX ® if you : are allergic to any of the ingredients in BOTOX ® (see Medication Guide for ingredients); had an allergic reaction to any other botulinum toxin product such as Myobloc ® (rimabotulinumtoxinB), Dysport ® , (abobotulinumtoxinA) or Xeomin ® (incobotulinumtoxinA); have a skin infection at the planned injection site. The dose of BOTO X ® is n ot the same as, or comparable to, another botulinum toxin product. Serious and or immediate allergic reactions have been reported including itching, rash, red itchy welts, wheezing, asthma symptoms, or dizziness or feeling faint. Get medical help right away if you experience symptoms. Further injection of BOTOX ® should be discontinued. Tell your doctor about all your muscle or nerve conditions such as ALS or Lou Gehrig’s disease, myasthenia gravis or Lambert Eaton syndrome, as you may be at an increased risk of serious side effects including difficulty swallowing and difficulty breathing from typical doses of BOTOX ® . Tell your doctor about all your medical conditions including if you : have or have had bleeding problems; have plans to have surgery; had surgery on your face; weakness of forehead muscles; trouble raising your eyebrows; drooping eyelids; any other abnormal facial change; are pregnant or plan to become pregnant (it is not known if BOTOX ® can harm your unborn baby); are breastfeeding or plan to (it is not known if BOTOX ® passes into breast milk). Tell your doctor about all the medicines you take , including prescription and over-the-counter medicines, vitamins and herbal supplements. Using BOTOX ® with certain other medicines may cause serious side effects. Do not start any new medicines until you have told your doctor that you have received BOT OX ® in t he past. Tell your doctor if you received any other botulinum toxin product in the last 4 months; have received injections of botulinum toxin such as Myobloc ® , Dysport ® , or Xeomin ® in the past (tell your doctor exactly which product you received); have recently received an antibiotic by injection; take muscle relaxants; take an allergy or cold medicine; take a sleep medicine; take aspirin-like products or blood thinners. Other side effects of BO TOX ® in clude: dry mouth, discomfort or pain at the injection site, tiredness, headache, neck pain, eye problems: double vision, blurred vision, decreased eyesight, drooping eyelids, swelling of your eyelids, dry eyes; and drooping eyebrows. For more information, refer to the Medication Guide or talk with your doctor. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit http://www.fda.gov/medwatch or call 1-800-FDA-1088. Please see BOT OX ® fu ll Product Information including Boxed Warning and Medication Guide at www.BOTOXChronicMigraine.com and at the link in the podcast description. Thank you for listening!

    We know that it’s not 'just a headache.' Check in with other people who know that first-hand in our Mighty With Migraine group
    Paige Wyant

    10 Types of Migraine We Don't Talk About

    When many people think of migraine, they probably associate it with really bad head pain – maybe even some nausea or light sensitivity, too. It’s often assumed that all migraine attacks look the same, when that couldn’t be further from the truth. While migraine is a neurological disease that can certainly cause classic symptoms like head pain or nausea, the reality is that there are many different types of migraine, each of which presents differently with its own unique set of symptoms. (For a complete breakdown of all the different migraine types and subtypes, you can check out the International Classification of Headache Disorders (ICHD-3), created by the International Headache Society.) For those unfamiliar with the condition, the type of migraine that likely comes to mind when they think about migraine is migraine without aura – a migraine that causes symptoms such as head pain, nausea, sensitivity to light or sound, but no visual disturbances. This is by far the most common type, as 70 to 90 percent of those with migraine have it, though  that certainly doesn’t mean it’s any less serious or debilitating. We wanted to shine some light, however, on some of the less common types of migraine – the ones that perhaps don’t get as much exposure or recognition since they tend to be more rare. We asked our Mighty community which types of migraine we don’t talk about as often as we should, and why it’s important for us to raise awareness of them. Regardless of how common a certain migraine type is, we should be talking about all of them to demonstrate how diverse and varied migraine can be. This may not only help those with migraine be better understood and supported by friends and loved ones, but receive quicker diagnoses and more accurate treatment protocols from their doctors. So without further ado, let’s talk migraine types: 1. Migraine With Aura When a person is diagnosed with migraine, they typically fall into one of two main categories: migraine with aura, or migraine without aura (there are multiple types of migraine during which the aura stage can occur). An aura, sometimes known as a “warning sign,” is a series of sensory disturbances that happens before a migraine attack, and usually lasts for about 20-60 minutes. These may include vision disturbances (e.g. seeing flashes or stars), sensory changes (e.g. feeling tingling or numbness) or speech or language problems (e.g. slurring or being unable to produce the correct words). Only about 25 to 30 percent of people with migraine experience aura. “ Migraine with aura. And I mean visual aura. I can suddenly start having visual disturbances starting from the corner of my eye, moving closer inward, impairing my vision. Sometimes I will start to see blurry, then black spots in my entire field of vision until I have tunnel vision, then completely lose sight in one of my eyes for a few minutes. Imagine all the mistakes to be made if I am writing something important… even worse, if I am driving. No matter how many times I’ve had these visual disturbances, it scares me every single time!” – Gina F. Did you know? People who have migraine with aura may be at an increased risk for stroke, especially women, and may have an increased tendency to form blood clots due to temporarily narrowed blood vessels. Always be sure to attend regular doctor appointments and health screenings. 2. Hemiplegic Migraine The word “hemiplegia” refers to paralysis on one side of the body, so hemiplegic migraine refers to a type of migraine in which people experience temporary motor weakness or paralysis on one side of their body in addition to the migraine headache attack. For those with migraine, hemiplegia is actually a type of aura, so it may be accompanied by other aura symptoms such as vision changes, tingling, numbness or difficulty speaking. Hemiplegic migraine is divided into two types – familial hemiplegic migraine (it runs in the family) and sporadic hemiplegic migraine (it has occurred spontaneously in an individual) – and is a very rare form of migraine. “I don’t think others understand that when I get these types of headaches I cannot move my left side at all. They are scary and I have been taken by EMS thinking I was having a stroke more than once.” – Susan D. “ The symptoms are scary to deal with and they come on so quickly. Also meds don’t seem to help as much.” – Brenlyn B. Did you know? Hemiplegic migraine is the only type of migraine that has been scientifically confirmed to run in families. 3. Vestibular Migraine The vestibular system, which includes parts of the inner ear and the brain, helps the body control balance and eye movements. With a vestibular migraine, a person experiences symptoms such as nausea, vomiting, dizziness, vertigo or lightheadedness, which may or may not accompany a headache. The condition affects approximately one percent of the population, while about 40 percent of those with migraine experience vestibular symptoms such as issues with balance or dizziness at some point, which may occur before, during, after or totally independent of a migraine attack. “ I have constant balance issues, unpredictable on-and-off vertigo, and had to go to a year of physical therapy to re-learn how to balance enough to do even the simplest of things. It can be utterly disabling and terrifying, both for the sufferer and for the people nearby. Plus, getting a diagnosis was anything but straightforward because it didn’t present as a ‘typical’ migraine.” – Megan S. “The dizziness is terrible. Scary even. I have had the symptoms of migraines since I was a teenager but only recently started having vestibular migraines.” – Skye L. Did you know? Many of the food and environmental triggers that vestibular migraine patients have are the same as those with non-migrainous vestibular dysfunction. 4. Chronic Migraine According to headache experts, migraine attacks can be categorized into four different tiers of frequency, ranging from no migraine (zero days of migraine each month) to chronic migraine (15 migraine days of migraine each month). The International Headache Society requires that, in order to be diagnosed with chronic migraine, a person must experience a headache on 15 or more days per month for more than three months, which has features of a migraine headache on at least eight days per month. Chronic migraine occurs in about 1 percent of the population. “ People assume that a migraine is just a headache, but it is so much more, and when your condition is chronic you can suffer as much as 20+ days every month. Head pain is just one of so many awful symptoms and people don’t seem to know about the others – nausea, vomiting, dizziness, light and noise sensitivity, vertigo, visual disturbances, parasthesia, tinnitus, the list goes on. And with chronic migraine, you’re limited on how many abortive medications you can take each month, so even if you have 20 days of migraine, you may only be allowed to take six migraine relief tablets that month. Until people know that there are so many other symptoms that go along with the head pain, and the struggles with trying to treat them, migraines will never be properly understood by people who don’t suffer with them, which makes every day that much harder for us to get through.” – Lottie A. Did you know? Migraine attacks may sometimes increase in frequency over time, for a number of reasons, though this can go unnoticed if it happens slowly, or if the patient only reports their most severe headaches. Keeping a headache diary or symptom tracker can help you and your doctor correctly identify and treat your condition. 5. Retinal Migraine A retinal migraine is a rare type of migraine in which visual disturbances occur in only one eye. These may include scintillations (seeing twinkling lights), scotoma (areas of decreased or lost vision) or temporary blindness. The headache phase of the migraine typically begins during or within about an hour of the visual disturbances. Retinal migraine is different than migraine with aura because the visual disturbances are coming from the eye itself, rather than the brain, so they can only be seen with that one eye. “ I lose the sight in one of my eyes regularly and unpredictably. My eye feels like it’s going to fall out, stabbing and throbbing. I also suffer with chronic migraines on top of the ocular ones. They come on so suddenly, often with fatigue and nausea as a cue, with no trigger that I can put my finger on.” – Amy B. Did you know? A retinal migraine is a type of ocular migraine, but the two terms are not interchangeable. An ocular migraine includes any migraine subtypes characterized by visual disturbances, including migraine with aura. 6. Abdominal Migraine Abdominal migraine causes symptoms of abdominal pain, located in the center of the abdomen around the belly button, nausea, vomiting and loss of appetite. It occurs primarily in children ages 5 to 9, and while most grow out of it, they often go on to develop migraine headaches, or other types of migraine, in adulthood. Abdominal migraine affects approximately 2 percent of children, and is even rarer in adults. “ I spent years, thousands of dollars and an untold number of doctors trying to figure out what was wrong with me. None of the Mayo Clinic doctors knew. All of my testing came back negative and all of the doctors were baffled. I stumbled upon the term abdominal migraine and diagnosed myself. Now I take my migraine headache medication for my abdominal pain. And it works great. I was diagnosed with migraine headaches at age 5. Abdominal migraines started at age 40.” – Carousel A. Did you know? Abdominal migraine can be difficult to diagnose due to the similarity in symptoms to many other conditions. In addition to the symptoms, the condition may be identified by the duration of the attacks, which last between two and 72 hours on average, and the complete remission from symptoms a person experiences in between attacks. 7. Migraine With Brainstem Aura Migraine with brainstem aura is different than migraine with aura in that the aura symptoms originate from both the brainstem (the base of the brain) as well as the cerebral hemispheres (the sides of the brain) at the same time. A person may experience typical aura symptoms, such as seeing stars, or experiencing tingling or numbness, but they also get the different symptoms brainstem aura produces. These can include slurred speech, vertigo, tinnitus, hyperacusis (impaired hearing), double vision, ataxia (uncoordinated movement) and decreased level of consciousness, and typically don’t last more than an hour. Did you know? Migraine with brainstem aura has formerly been known as basilar migraine, or basilar artery migraine, as it was believed the basilar artery was the origin of migraine attacks causing brainstem aura. However, it is now known that the nerves rather than the blood vessels are the cause of brainstem aura in migraine. 8. Silent Migraine A silent migraine occurs when a person experiences any of the “typical” migraine symptoms (such as nausea, sensitivity to light or sound, aura, etc.) – but without any head pain. It’s important to note that a silent migraine is not officially classified as a “type” of migraine, as “silent” technically just refers to a phase of a migraine attack in which there is no headache. But while many of those with migraine may move through the four typical phases (prodrome, aura, headache, postdrome), some skip the headache phase and go through an entire migraine attack without experiencing any head pain. Did you know? A silent migraine may be known by a number of different names, including acephalgic migraine, amigranous migraine, migraine aura without headache and migraine equivalent. 9. Menstrual Migraine Menstrual migraine is a type of migraine that is linked to the timing of a woman’s menstrual cycle. The migraine attack usually occurs in the two days leading up to and the first three days of the period. While menstruation may be a migraine trigger for many women, menstrual migraine is a specific condition that affects less than 10 percent of women. “ Menstrual migraines: You know it’s coming, and there’s not much you can do to prevent it. Or migraines triggered by high humidity, storms, etc.” – Monica P. Did you know? Menstrual migraine is thought to be caused by the drop in estrogen levels that occurs just before a woman’s period. 10. Intractable Migraine Also known as status migrainosus or refractory migraine, an intractable migraine is a persistent type of migraine that doesn’t go away or respond to treatment. It occurs when a migraine lasts longer than 72 hours, even with treatment. They are typically very intense, causing symptoms such as nausea and dizziness in addition to head pain, and may require a hospital stay. Pain levels and symptoms may vary from day to day, but the migraine could last for months or years. Intractable migraine affects less than 1 percent of those with migraine. “ Chronic intractable migraine – a migraine that just keeps going and going and going. I have had this continuous brain pain for almost six months. Almost no pain medication helps and it has impacted every single area of my life.” – Ashley A. “ Intractable constant migraine, won’t go away regardless of treatment. Had the same attack for nearly five years and nothing touches it really apart from being stuck in the dark most of the time.” – Leanne H. Did you know? Like all other forms of migraine, there is no cure or “one-size-fits-all” treatment for intractable migraine. It can take quite a bit of trial and error and working with different specialists to find medications, therapies, lifestyle changes or a combination thereof that can offer some relief.

    Natalie Sayre
    Natalie shares the ups and downs of mindfully navigating life with chronic illness with the Mighty community.
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    Kat Harrison

    Seeking Balance in My Life With Migraine

    The last time it happened was in the parking lot of my local library. I was about to get out of my car to heave a few recent reads into the book drop bin when my vision grew cloudy. My stomach began to churn like one of those cruise-ship-vacations-gone-wrong and I could hear my heartbeat in my ears. After 17 years with chronic migraine, you would think I’d be emotionally numb to the spontaneity of an attack. But the reality is, I’m not sure you ever get “used” to it. Living with a chronic condition like migraine is one of the hardest things I’ve ever done. I’ve had to make an umpteen number of sacrifices — like working from home and limiting my social interaction — and have way too many weather apps on my phone (thanks so much, barometric pressure changes). It makes you vulnerable in all of the ways you didn’t want to be and cracks you open like an egg. Perhaps the hardest part about my life with migraine is the near-total loss of flexibility over your own life. I don’t get to plan a day and stick to it if an attack decides to blow through. I don’t get to avoid insurance claims or ignore the pros and cons of treatments. I am at my brain’s mercy. But as time has ticked by, I’ve figured out ways to cope and regain a bit of balance — choosing my neurology practice wisely, becoming a better advocate for myself and setting hard but necessary boundaries with my support system. There is also a lot of sarcasm involved. Another way I’ve gained balance is by putting the following mantra in practice: “No one knows my body like me.” When I feel especially overwhelmed, I repeat this to myself. It helps me self-soothe when guilt climbs up me like a vine. It’s a reminder that I know myself and my health best, especially when it comes to navigating treatment plans. Finding the appropriate treatment for myself is like an evolving art form. It takes patience, education and the right doctor — oh, and a hefty dose of grit. It’s taken me over a decade to be somewhat settled in my regime. I’ve tried a sky-high number of medication combinations, holistic treatments, lifestyle changes, massage and more. It took me about a decade, but I’m finally equipped with the arsenal I need to manage my condition. And the key ingredient to how I got there was through open and honest dialogue with my neurologist. If you live with chronic or episodic migraine, one treatment you could consider talking to your healthcare provider about is AJOVY ® (fremanezumab-vfrm) injection , a prescription medicine used for the preventive treatment of migraine in adults. Do not use AJOVY if you are allergic to AJOVY or any of the ingredients in AJOVY. AJOVY is a treatment which can help prevent migraine and is administered via an autoinjector or pre-filled syringe. AJOVY, a calcitonin gene-related peptide antagonist, is a long-acting (12 weeks) treatment. It can be administered quarterly (3 injections on one day every 3 months) or monthly (1 injection per month).These treatments can occur in either your home or your doctor’s office. AJOVY may cause allergic reactions, including itching, rash, and hives that can happen within hours and up to 1 month after receiving AJOVY. Common side effects of AJOVY include injection site reactions. For continued important safety information, please see below. Whatever you choose to pursue in your life with migraine (I see you trying!), it’s imperative to find the balance that works for you — between living and treating, between advocating and laughing. It may take some trial-and-error, but you’re not alone in that journey. I’ll bring the ice packs if you bring the sunglasses. And in case no one told you this today, migraine does not define your worth. You may feel powerless at times, but you still have the power to choose — who treats you, what they treat you with and yes, how many weather apps your phone should truly hold. IMPORTANT SAFETY INFORMATION Do not use AJOVY if you are allergic to AJOVY or any of the ingredients in AJOVY. AJOVY may cause allergic reactions, including itching, rash, and hives that can happen within hours and up to 1 month after receiving AJOVY. Call your healthcare provider or get emergency medical help right away if you have any symptoms of an allergic reaction: swelling of your face, mouth, tongue, throat, or if you have trouble breathing. Talk to your doctor about stopping AJOVY if you have an allergic reaction. Tell your healthcare provider about all the medicines you take, and if you are pregnant, planning to become pregnant, or are breastfeeding. Common side effects of AJOVY include injection site reactions. Tell your healthcare provider if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of AJOVY. For more information, ask your healthcare provider or pharmacist. Call your doctor for medical advice about side effects. You are encouraged to report side effects to the FDA at 1-800-FDA-1088. APPROVED USE AJOVY is a prescription medicine used for the preventive treatment of migraine in adults. Please see Patient Information Leaflet within the full Prescribing Information on AJOVY.com FRE-43032 September 2020

    Natalie Sayre

    52 Practical Ways You Can Help Migraine Warriors

    One of the most challenging aspects of living with migraine can be feeling a sense of total isolation and detachment from those around me, especially when I’m in the middle of an attack. Even more poignant when loved ones are “one door away,” and I feel worlds away locked in a pain vortex. Learning to communicate about what this experience feels like, and how to ask for help has been an incredibly long process for me. Migraine so often leaves me with feelings of being a burden, or guilt — and practicing articulating my needs or asking for help hasn’t always been something I’m comfortable doing. However, I’ve been deeply touched by how many of my loved ones are willing to listen, once I work up the courage to voice my needs. In opening the door to more honest and authentic conversations about what living with migraine is really like and how my friends and family can support me, my relationships have grown stronger. And, much more often, I receive the help and support I so deeply need on some days. I hope as you scroll through the list below, you feel seen and validated in your migraine struggle. Or, if you are a migraine ally who has found your way to this blog (if so, take a minute to know you are a wonderful friend, family member, co-worker, etc. for doing so!), I hope these ideas will give you practical, actionable ways for how to show up and support the migraine warriors in your life with more clarity and compassion. This list was compiled from the Mindful Natalie online community on Instagram (@mindfulnatalie), where I share my journey of endeavoring to live well while managing chronic migraine and several other conditions. Would love to have you come say hi and join the conversation, and wishing you a happy #migraineandheadacheawarenessmonth! 52 practical ways to be a migraine ally in action: 1. “I get so foggy during migraines that it’s hard to keep track of what medication I have or haven’t taken — my boyfriend helps me keep track with timers and apps on my phone.” 2. “Listen — even though you might not be able to understand what I’m going through, being able to talk about how I feel with someone who is curious and kind means a lot.” 3. “Offer to do household tasks.” 4. “It’s so hard to manage feeding myself when I’m in a multi-day attack, it is so helpful when family or friends ask if they can make me something to eat or drop off prepared food.” 5. “Be mindful of the environment and keep the lights and sound low when hanging out.” 6. “Offer to give lifts to appointments.” 7. “Picking up my kids from school and having them over for the afternoon when I have had a bad attack day.” 8. “Be flexible in case we have to cancel, and please don’t make us feel like it’s our fault if we do — we want to keep the plans and we already feel sad to have to cancel and let you down.” 9. “My family has my daughters over for regular sleepovers — this helps so much.” 10. “Big picture stuff. Supporting policy that helps people with migraine in your life — like increased access to health care, paid sick leave, increased funding for research.” 11. “Offering to accompany me to doctor’s appointments.” 12. “Set an end time when we are hanging out. Often, I’ll push through invisible pain because I’m not sure how to end things. At the beginning of our hang out, ask me how long I want to set a timer for to visit and then be the one to keep us both accountable when that time is up.” 13. “Just sitting with me when I have an attack.” 14. “Picking up medications for me from the pharmacy.” 15. “When you invite me to something, include a ‘but it’s completely OK if you have to cancel’ caveat. I feel so guilty every time I do have to cancel.” 16. “Sending me links for quiet and gentle podcasts to listen to.” 17. “Let me know it’s OK if I need to cancel plans and that you know I wouldn’t if I didn’t have to.” 18. “Generally be aware of loud sounds and light — if a situation seems like it might be ‘too much,’ tell the person if they want to move or leave you totally understand.” 19. “Offer to sit in on a telehealth appointment and take notes for me.” 20. “Keep inviting me to things even if you don’t think I’ll be able to come. It means a lot to still feel included.” 21. “Proactively ask questions about the environment when we arrive somewhere together or I come into your home. Is the light too bright? Music too loud?” 22. “Send regular check-ins via text message with no pressure to respond.” 23. “Acknowledge what a big role migraine plays in my life. When I’m well enough for us to spend time together, don’t ignore it or be afraid to bring it up. I actually appreciate it more than you know when you ask questions. It makes me feel like you care.” 24. “Offer to come by my house and help with dishes and laundry when I’m bedbound.” 25. “Turning down the music and dimming lights at gatherings without me having to ask.” 26. “Offer to drop off cooked dinner.” 27. “Reassuring me out loud that you understand when I have to cancel plans, acknowledging the fact it is something that must be so hard for me to do, especially so often (ex: I’d love to spend time with you, but I totally understand, I hate that you’re hurting and know you hate to cancel. Rest as well as you can and know I totally get it).” 28. “Ask if there are any upcoming appointments you need a buddy for.” 29. “Follow social media accounts that talk about and accurately portray living with migraine so you can get a glimpse of what my life is like without me having to explain more.” 30. “Ask if there is anything I need from the grocery store when you’re already going (ex: is there something I can drop off for you on my way home?).” 31. “Notice if I start going downhill when we are together or at an outing. Ask if I want water? Meds or ice packs? Need to go lie down alone?” 32. “Be interested in the treatments and medications I’m currently using. Ask questions that show you are curious and let me share in detail about my experience.” 33. “Offer to switch seats if I’m facing the TV or a bright window.” 34. “Be the one to ask the waiter if the music can be turned down.” 35. “Making phone calls on my behalf to schedule appointments, deal with insurance issues, refill medications, etc.” 36. “Switch seats with me if you notice the sun is in my eyes.” 37. “Opt for dimmable or tabletop lights instead of overhead lights.” 38. “Offer to take my dog for a walk.” 39. “Keeping up with the newest research and treatments to help me talk through my options.” 40. “Validate the severity and intensity of migraine to others so I can take a break from self-advocacy.” 41. “Make sure you are not wearing perfume when around a friend who experiences scent triggers.” 42. “Offering to make food and drop it off with no strings attached (don’t even need to answer the door!).” 43. “Offering to stop by for distanced porch socializing at the drop of a hat.” 44. “Hold space for my experience. When the pain is unbearably high, let me melt down and cry without trying to ‘fix’ how I feel — then sit with me until I’m ready to remind myself it’s going to be OK and I can get through this.” 45. “Offering to take you to the doctor or for bloodwork.” 46. “Cues making accommodations less disruptive to social flow (ex: subtle hand sign if too loud).” 47. “Being sensitive to light and noise in common living spaces, not insisting on things being bright and loud.” 48. “Offering company for a short walk around the block.” 49. “Not turning on all the lights when you enter the room.” 50. “Offering to run specific errands (like pick up medication).” 51. “If there is a social gathering, offering to come early to help with set up and/or clean up (non- C OVID-19!).” 52. “Offering to help take care of pets or walk the dog.” You can join our Instagram community at Mindful Natalie.

    Community Voices

    What are some unexpected things that trigger your migraine?

    <p>What are some unexpected things that trigger your <a href="https://themighty.com/topic/migraine/?label=migraine" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce9c00553f33fe997c0a" data-name="migraine" title="migraine" target="_blank">migraine</a>?</p>
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