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Chronic Pain: Living with it, and empathizing with people who have it.

by - 8:42 PM

This is a post I wrote a couple years ago that I originally only shared with friends and family. I'm sharing it with you all today in hopes that it can provide some clarity and understanding for those of you who may not experience chronic pain, and help those who do. 



August 25, 2015

I'm not writing this to gain your pity, or to rant (ok, a little bit to rant), but mostly because I think people need to try harder to have empathy for one another. Whether it's culturally, politically, in the workplace, or when speaking about physical and mental health, we all just need to care a little bit more, and actually try to understand.

For those that I'm close to, you probably know that I've suffered from chronic migraine since I was about 10 years old. For those that I'm not, you probably had no idea, and just thought I was a major flake, or work from home too often. If someone suffers from chronic migraine, it means they experience symptoms 15 days or more per month. I'm 23, but have lived as many healthy days as most people have at the age of 16. I've hit rock bottom, and I'm at a point where I'm ready to try anything to get my life back. Which is probably why I paused Jillian Michael's to sit down and write this, at 9 pm on Wednesday night.

I actually vividly remember my first migraine. Samira's 4th grade birthday party, I left the movie theater and puked up the entire contents of Samira's goodie bag. My parents came to pick me up, and I'm pretty sure my dad gave me a mini car speech which included his go-to lines: "Too much candy, Tays!" and "make sure you floss tonight."

That was the beginning. Then there was our family friend Jake's bar mitzvah (my dad was actually pretty bummed about missing the sundae station on this one, he still brings it up today), 5th grade overnight field trip (puked on boat from the 1800's, how many people can say that?), Girl Scout camping trip...migraine three years in a row (I'm pretty sure that deserves some kind of Brownie award), picture day, and countless others.

These are the big days- the one's that I vividly remember. There were also hundreds, probably thousands, of days where I was unable to study for a test, go to gymnastics practice, was dry heaving for 10+ hours straight, unable to get out of bed or open my eyes.

They started getting worse throughout college. My preventative medicine stopped working, I missed social events, classes, parties, and days in bed would turn into Urgent Care and ER visits. I've seen multiple neurologists, had 4 inch needles poked in my head, done physical therapy, tried botox, had blood tests, gone gluten-free for a year (never knew how much I appreciated a good bagel), acupuncture, chiropractic work, massage therapy- you name it.

For those who have never experienced a migraine (a true debilitating, throwing up, ER kind of migraine), you're one fucking lucky human being. When people ask what it feels like, I literally have no words to explain it. I'm so grateful that I have an amazingly caring best friend who grew up with a mom who experienced chronic migraines. Seeing her mom go through what she did, she has an idea of what it's like, and has been there to take me to the ER every time, knows exactly what to tell each doctor when my head's in the trashcan, and got me a leopard cover for my hot pack (that I use to put on my head as temporarily relief) for my birthday- that's how you know a friend truly gets you. Not gonna lie, that was one of the most exciting, and thoughtful birthday gifts I've ever received.

But the worst is when your family, roommate, significant other, or in my case, random people on the internet... just don't get it. I've had boyfriends who tell me to drink water and it will go away (you're funny), or ask to Skype 5 minutes after I told them I had a migraine (as much as I'd like to see your face, it probably wouldn't look as cute on a vomit-covered computer screen.) This isn't their fault, it's hard to feel what someone's going through if you've never felt it yourself.

But if you're someone who experiences chronic pain, you know that it's the most degrading, belittling feeling when someone doesn't try to recognize, or empathize with the pain that you're going through. 

Recently, my best friend (leopard-hot pack-birthday-present-best-friend), found out that she has a fractured spine, which basically means her sciatic nerve sends horrible pain down her back and leg, and sometimes she can't walk.

I have no idea what she's going through. The closest thing to "back pain" I've experienced is when you fall asleep on a yoga mat for too long and feel like you're 90 years old when you try to stand up.

This is obviously nothing like what she's going through. I try to make a conscious effort to continuously put myself in her shoes, learn what helps and doesn't help, and be aware of what I'm saying. 

Let's take words like "I feel you" and "I'm sorry" out of our vocabulary, because are you actually? You might be, but for someone experiencing chronic pain, we usually quietly say thank you, but inside are upset, alone, and frustrated, because those are the words that you're trained to say.

Instead, take a minute to try and put yourself in someone else's shoes. Literally- go in the bathroom or close your eyes, sit there, and think. If you're having trouble imagining what they're physically feeling like (which is really hard), empathize with the fact that someone you care about is going through something really shitty.

Sometimes the best thing to do is to not say anything. I feel like that's a cliche quote I've probably run across on Pinterest, but really... try it. Hug them, be there for them, and do things that show that you're trying, because the smallest gestures are what makes the biggest difference.

Let them know that you're trying to imagine what they're going through, and ask them how you can help, or how you can better understand.


Whether it's someone's health, religion, or beliefs, try to embody being empathetic.  It's something that I continuously work on. I truly believe that empathy has the power to heal wounds, help prevent war, and allow people to more effectively communicate, because when we're empathetic towards one another, we get it. We are consciously making an effort to hear someone's story, and learn how they feel, or why they believe what they believe. We have a new perspective that allows us to internalize, and begin to process what someone, a society, or a culture is going through.



If you experience debilitating migraines, I'd love to hear what's worked for you. If you experience chronic pain, be communicative with your loved ones about what's helpful, and what's really not. At the end of the day, they want to be there for you, they usually just don't know how. 


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53 comments

  1. Hi Taylor,

    My dad had cluster migraines when I was growing up. It was horrifying to watch. My brothers and I would have to sit there quietly while he screamed in pain and even said let him die when it hit. Back then in the 80s and early 90s, they gave him oxygen tanks and shots that would knock him out for a whole day. Thank God those stopped about 20 years ago. Just reliving those moments breaks my heart so hearing your story hits so close to me. I too suffer from migraines but not to your extent. I offer no advice for relief but just positive prayers and support. It's brave to share your story when no one asks for it. You don't owe anyone an explanation but it's powerful to read. Much respect to you and your YouTube channel. I hope you have much better days ahead. - Elise @mettaworldelise

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    1. Hey dear, I already left you a link on one of your videos months ago, but I'll try again... What worked for me is this https://www.amazon.com/GEOMETRY-DIVINE-SPARK-Serena-Alba-ebook/dp/B006IH6RWO I had ER-type of migraines from year 11 to around 16/17 as well as ordinary headaches in between. Nothing that official medicine offers was helping so my mum and I went along the line of alternative one... most things there didn't work either but this book was finally something that did. I suppose you won't believe it, but give it a go.

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    2. Well said Elise. I'll be sending prayers your way also In hopes that yours doesn't get any worse my dear.

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  2. Really well said, thank you for this.

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  3. I was diagnosed with Lupus a couple of years ago so chronic pain is a way of life for me. For as long as I could remember I was always sick or something hurt. I was told "you're too young to be feeling that way. Go get some exercise and you'll feel better." I'm 36 but most days I feel 96. I am a single mama of two little ones and I have to push through the mind numbing joint pain and swelling. I'd like to say that I've found something that has helped with the pain but I haven't. But you are an inspiration, Taylor and you are extremely brave for sharing this with your baerittos.
    XoXo
    Amanda M.
    Florida

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    1. Thank you, Amanda. So sorry to hear that you have Lupus, I have friend with Lupus and we used to bond over Spoons. Hope you have all your spoons tomorrow. <3

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  4. I have fibromyalgia and pretty much everyone in my life doesn't take me and my daily pain seriously. It's seriously takes every ounce of effort in my body to get out of bed and I've contemplated suicide way too many times. I've never had migraines, but I understand what it's like to have chronic pain and be in and out of hospitals and drs offices. I'm glad you posted this and hopefully it helps people be more open minded and not so judgemental. ❤️

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  5. Sister in suffering here... I know different strokes for different folks, but what has worked best for me is to head them off at the pass. As I am sure you are familiar, it has become very easy for me to distinguish a headache from a migraine. At the first inclination of a migraine I have to pop some Treximet, go into a cool, dark, silent room, and get into the "tornado drill" position on my bed. I apply pressure to the back of my head and maintain that position until it passes.

    Sometimes it's fairly quick if I catch it early enough. Then again, it can seem like an eternity before it passes. My longest stretch of just kill me now hurling/dry heaving pain was 12 days. I'm 37, & it has taken many years of suffering to get to the point I'm at now. I hope that you can find a method of control that gives you some relief.

    Love your channel, I can always count on you for honest transparent reviews & I appreciate that! Much ❤️

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  6. Hey Taylor. First off I just want to say thank you for sharing this. I always just want to hug you through the computer screen when you tell us you're having a bad migraine day.

    Second. It's not the same as physical pain. But I have crippling depression. I've had it for over 10 years. So I get what you're saying to a point. I've had about the same number of good days as you have. I'm high functioning yet people just don't seem to get it when it's a bad day. They say get over it, don't let something hat happened in the past ruin what you have now, it's time to move on. What they don't understand is it's not something that I can just get over. It's not something that I get to control. It's a mental illness and I have to live with it every single day of my life. I have to tell myself when I wake up to have a good day. I have to put in more effort when it comes to social situations. I have to remind myself to not be obnoxiously happy or don't be sad.

    Just because it's something that others can't see doesn't mean it's not there. ❤️

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    1. I suffer the same, and you put everything I wanted to say.

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    2. I am suffering from depression too and your words are so true ❤️

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  7. The people who have never had migraines (let alone chronic migraines) don't know what they are talking about. "Try this", "do that", "stop being a drama queen."
    I had my first migraine when I was 14. And I suffered for YEARS because my birth mother is a migraine sufferer, but because she didn't start getting them until she was 27, she didn't believe me. Refused to take me to the dr or to get treatment. I remember having to have her pick me up from school one day because I was in so much pain I couldn't open my eyes. We lived 4 min from the high school and we didn't make it even half way home before I had to have her pull over so I could throw up. I have spent more days and nights than I can count, sleeping on the bathroom floor (the only room in the house without a window) with the light off and a towel covering the crack under the door because the light is so painful I can't stand it. I worked in the kitchen of Burger King during high school and I had to wear sunglasses while working during my migraine days because I couldn't function at all without them. I would throw up in the break room, wash up and basically crawl my way back to my station.
    I'm lucky that now at the age of 26, my migraines have finally gone from about 2-3 a week to about 3 a month. Chiropractic visits, massage, a mixtures of SEVERAL medications (preventative, as needed on set, nausea)and other methods (heating pads, oils, tiger balm etc) work for me. It took 12 years to get my migraines under control. And I know that they are only under control "for now." I know that my migraines could flare up at any moment. So until you experience chronic pain or illness, don't tell others what to do or try or dismiss their struggles. Listen. Be understanding. And be grateful that you are blessed enough that their struggle isn't your struggle.

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    1. one thing you said about your mom not believing you resonated with me. it actually made me remember a lot about when my migraines first started. my mom didn't suffer from migraines but her mother did. she always hated that her mother would spend day in and day out in a dark room and lost it if someone made noise or turned on her light. my mom thought that she was just a bad person. just a bad mom. she just didn't get it. and of coarse at this age she shouldn't have. her mom made the mistake of just sitting down and giving up. this was back in the 60's and 70's so they didn't do much for her migraines except throw her some vallum (sp?) she ended her life when my mom was 12. I started getting migraine so early... I'd say around the age of 12. My mom still didn't understand them so she refused to get me help. she went through it with me for years telling me to just drink some water and take some Tylenol! until she finally realized what her mom went through.. then realized that's what I was going through. took her years to believe in my pain instead of thinking I was lazy. but now she has more respect and understanding to her mothers situation. full circle kind of thing.. you know? sorry for the long story I just had to get it out because I really hadn't even thought of what I went through as a young teen and struggling with migraines. thanks for sharing your story

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  8. You are an inspiration to all. I appreciate everything you do for those of us who don't even know you personally, and hope you have the opportunity to live life pain free. Thank you!

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  9. I've put off giving health advice/suggestions because well, you get a shit load of tha. But given you asked.....

    Has someone checked you for PRO aka
    Patent Foramen Ovale? It's a type of hole in your heart and has been linked to migraines. The research has been around for only 10ish years now and it's still mixed. However a family member who had suffered migraines for years (and I mean put you in hospital make you lose your memory migraines) had the operation to have it fixed. Initially he didn't think it worked and they were worse than ever, then a few months post surgery it stopped. It's now been a few years since he had a migraine. If it's not something you have ruled out already it might be worth looking in to. It won't work for everyone, nothing ever does. But you/your Dr has to know about it to eliminate it.

    If it's something you have heard of before and already had eliminated sorry for the repeat and sorry it wasn't your solution. I do hope one day they work out what the hell is causing them for you.

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    1. Saving this and looking into it. Thank you!

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  10. I've had chronic migraines since middle school as well, and I am in college now. The only thing that works for me is to take Benadryl, and lay down with an ice pack on my neck and head. For some reason heat makes mine so much worse so ice is my friend.

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  11. I do not have chronic(more then 10 days out of the month? I think) migraines. But, I do have one at least every week, if not more often. Some are worse then others, and it's been getting worse and worse as I get older, but that's it the point I was going for. Rambling. Anyways. As a child and teenager I was constantly plagued with headaches(which became migraines at least twice a month, I literally felt like I always had a headache, and still do), my friends used to poke fun at me saying "You just had a headache yesterday, do you just not want to be around me or what?" When I would turn down plans, and it took them years to realize that I'm no fun when I have a headache/migraine. When I was younger I would cry and cry because my friends would get so irritated with me for never doing anything. It took a long time for them to realize I wasn't a flake. I think when people hear "Headache" or "migrane" some think of the everyday headache as what I'm talking about.

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  12. Hi Taylor,

    I truly empathize with what you're going through- my story is very similar to yours. Not to beat a dead horse or take away from your story, I just wanted to stop by to say what happened to work for me. I hope you can find something that works for you soon love- and until then i hope others begin to show you empathy for the immense pain you deal with everyday.

    My migraines started at 11 and stopped when I finally was prescribed celexa at 17. My neurologist had me on a 40mg dosage for 1 year then gradually tapered me off, and have been migraine free for five years! I know you've tried everything under the sun- but just wanted to mention what worked for me, in case you haven't tried it yet. (Imitrex was my original breakthrough migraine medication but was taking it constantly.) once I was prescribed to celexa I would rarely need to take any breakthrough medication.

    My migraines were categorized as chronic with auras- my vision would completely go black then I would get hit with nausea and migraine pain in the back of my head and neck. The days after were just complete soreness, almost like I had been hit with a baseball bat- especially when bending over.

    I hope someday you will find relief- sending you love and constant support ❤️

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  13. I suffer from chronic migraines as well. Its so hard to explain to people who think it is just like a regular headache. Working fulltime hasnt been something I could do for years now. And even as part time I have to alter my schedule weekly to get in my hours around my pain. I am thankful to have a wonderful workplace that allows me to work when I can with no set schedule except to be there 30 hours a week. And as a Canadian I have free healthcare as well so I am thankful to be able to show up to an ER, get treatment and come home without paying anything. The one thing that is working for me now is 30mg of amitriptyline every night as a preventative step, after 8 month (a long time to wait) it has finally settled them down to about 3 per month. And my worst one every month when I start my period is now 1/3 as bad as it used to be. There's hope out there, clinical studies are making vast improvements and hopefully once FDA approved will be able to give us our lives back fully. My thoughts are with you.

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  14. Invisible illinesses are never easy to talk about. People see someone who looks "normal" and assumes that because they dont have something that can be physically seen its not there. Its hard talking to people about a pain you cant see or be fixed. I dont suffer from headaches but i suffer from PCOS. Ive been found on kitchen and bathroom floors passed out because cycsts rupture and cause so much pain i think im dying. Talking to doctors doesnt always help because its just a "symptom of PCOS". Having pain so bad that you litterally think your insides are exploding is something that only fellow people that suffer from your same chronic illness will get. Ive stopped complaining because although my insides fee like a bomb is going off, they cant sympathize. They dont understand or dont want to undstand. Chronic pain shouldnt be treated as sometihng that can be easily cured because guess what? MOST of us that have a disease or chronic pain have done so much research that most of the time i school doctors on my disease. Dont give up hope. hope i think is all i have left. I cant imagine having migraines as bad as yours as im sure you cant imagine having to deal with PCOS. but people are rooting for you. Im rooting for you. Dont ever stop trying to find a cure, its what keeps me going most days. Love from Vancouver, Washington. -Sommer

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  15. I have suffered chronic migraines and was diagnosed with fibromyalgia + more since I was about 10 also. I have different symptoms with mine but I can relate on so many levels. I am 18 now and still suffer from migraines. I like you have missed school days, parties, family events because of my migraines and pain in my body. It's tiring having to justify yourself to others. I had to write papers for PE at home when I was in school instead of participating because I physically couldn't do it. But by looking at me you wouldn't be able to tell that I was in pain all the time. People, even my friends, thought I was lazy. They didn't understand. It was an emotional roller coaster because of this. I agree we need to have more empathy and compassion for other people and what they are going through. We can only feel our own pain, but that doesn't mean that somebody else's pain doesn't exist, and it may not always show. I feel like you don't need to explain yourself to anyone because there will always be haters, but love overpowers hate, and you have so many supporters �� I know it's hard but try not to let those few mean people commenting on your videos get you down. they aren't in your body, and they don't know how it feels to be you.

    Bow, WA. ~Reagan

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  16. Taylor, what you've written is so honest so thank you. I'm just sorry you've experienced something that's pushed you into sharing something that was never intended to be in the public domain.

    I grew up with a Mum who suffered with Chronic Migranes and unfortunately still does. And whilst I had an amazing dad who would distract us by taking us out when we're little (mostly because I think we were just being too loud) I soon learnt what it meant when mummy had a headache. But there's been many times where Dad has been working away when my super human mum has had to push through her pain to make sure we got to school. Sure there was a method in her madness because to have the tiny humans looked after by someone else for those hours between 9am and 3:30pm was a godsend. But this also meant that we got very used to holding her vomit buckets in the car haha! As an adult I can now appreciate how almost impossible that must have been for her but she still managed it.


    We as a family have used humour to our advantage when we talk about Mums triggers and the fact that she's often in bed for 3 days if it's really bad. Her's can be triggered by foods so we often joke about needing to take mum a snack pack or at functions (like my wedding) ordering her a personalised meal which hopefully won't trigger a migraine.


    I'm not going to offer any advice - because personally I think that migraines are all so different that I'm not sure it would be useful. Plus it seems like you know your triggers - as much as you possibly ever could.

    I totally agree with your stance on empathy and it's also something I work on personally everyday. My view is that we are all humans first. It doesn't matter what our difference are, humans deserve to be treated with respect. And as fellow humans we to seek to understand them and what's important to them.

    On a fan girl note now- I've been following you for years and you're my go to for trusted reviews especially for acne/pale skin. To the point that if I say to my partner "but Taylor thinks it works" he knows that means I've found a video you've done about a product I was thinking of buying. I don't often get involved in social media because of my job but know the burrito fam has silent members too who appreciate all your hard work.

    Love Sam ������

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  17. Hi Taylor! Just wanted to comment that you are not alone. Since birth, I have been in pain. I have a genetic disorder that causes pains in my joints (they don't actually know why) and muscles. I have had two open heart surgeries. I was diagnosed with Chronic pain and fatigue. I have had 5 back injuries as a nurse, and my most recent one has left me with 24/7 pain. It's a non-stop burning sensation that can escalate to the worst pain ever and has left me crying on the floor in a fetal position. I also have Fibromyalgia, and juvie arthritis. (these all have been diagnosed yes). I used to have Chronic Migraines, just not as bad as yours. I've thrown up a few times from them. I remember once having a bad reaction to a med (I can't take typical migraine meds because of my heart condition) and had what the neurologist called ice-pick migraine. It was centered over the right side of my head/eye, and was the worst imaginable pain ever. I couldn't eat, talk, sleep, or work without pain. I had to wear sunglasses to make light bearable even inside.

    I think more people definitely need to learn empathy. I'm 32 but have the body of a 90 year old (I'm actually having two hip surgeries in the upcoming months/year). I find I bond better with other spoonies. They understand, to a degree, what it's like to live with stuff that prevents you from living.
    <3 I hope one day you find something that really helps. Or that science finds something that stops them altogether.

    On a fan girly side: I LOVE your videos! You are my go to as a pale princess for all things makeup wise lol.

    Much love and hugs from a Canadian fan <3

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    1. Have you ever heard of Ehlers Danlos Syndrome? Your symptoms line up with the classical and vascular form of EDS. I too suffer from chronic pain in my joints, back, and neck. I was diagnosed with vascular EDS last year after I had a small arterial dissection. There are several forms of EDS ranging from joint related to vascular and everything in between. It is rarely diagnosed and very commonly misdiagnosed. It is diagnosed through a genetic test to find a collagen mutation. Your symptoms struck a cord with me and sounds so much like my family's history. Good luck to you!

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  18. In my 27 years, I've experienced 2 full on migraines. Pain wise...a miscarriage and those migraines have so far been the worst experiences for me. My last migraine was about 2 yrs ago and I'm still traumatized! I just pray I never experience anymore. Pain is terrible...I can't imagine how tough it is to deal with unbearable chronic pain. Just had to say I appreciate you sharing this, it is truly inspirational in many ways. By sharing your story, you also touch the hearts of those insensitive/ignorant people..who must clearly not know pain. Some people don't consider their possibility of living in pain or seeing a loved one live in pain...empathy is important. This will continue to be in my thoughts and prayers. My high hopes are that you become pain free. Keep doing what you're doing.

    You're amazing! ❤️❤️❤️❤️❤️❤️❤️

    ~Yece

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  19. I have migraines and the only easy thing to do that I've found is getting in the shower with the water on as hot as I can stand it. I let that super hot water beat down on my head. I'm probably under the water like this for at least 30 minutes to an hour. Something about that very hot water on my head really does take the edge off. It doesn't take the pain away completely but it's the only relief that I can find at this point. I'd say when my migraines are at a pain level of 10 that hot water takes it down to like a 5 (no kidding). Unfortunately the pain level rises back up again a few minutes after getting out of the shower. I'm actually seriously considering getting a hot tub, I've heard good things about heat therapy online and want to give it a try. Heat packs work somewhat, but I wonder if submerging in hot water at the start of a migraine would help.

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  21. I will make time and go through all the comments later, but for now I just wanted to say - Thank you all for sharing your experiences. I actually don't know a person with such severe pain but the lesson is nevertheless the same - practice empathy.
    And the last sentence is very true - people just don't know HOW to help. I, myself, would say something like 'I am truly sorry you are going through this. I hope you'll feel better soon', because what else is there to say? I know these words are not enough and probably sound shallow, but what else could I say to express empathy?

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    1. The fact that you even are asking is everything. It's being considerate, kind, loving, and making an attempt to be understanding. For me, if someone just lets me know they are there is immeasurably appreciated. Just saying "I'm here." Letting someone know they aren't a burden may be helpful too. In the past I've been angry and defensive because of the immense guilt I felt at not being able to be as good a friend/sister/daughter/employee as I would like. Someone letting me know I'm loved just the way I am and never a burden would have been nice during my darker days. I have a 2 year old son and the guilt can be overwhelming when I think about having to scale things back to accommodate my symptoms.

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  22. Hi Taylor! I've also suffered from migraines since I was about 12 (I am now 27). I only recently brought this up to my doctor within the past year. My mom always gave me Tylenol and never looked into it further. I'd work long days, starting at 2:45 am and as soon as I got home, my husband would say "I can tell you're in a bad mood from the smug look on your face." A) yes, a jerk thing to say on its own B) it was because I had a migraine all day and nearly every day. I've tried B2, allergy medicine and blood pressure medication (also used to treat migraines) with no relief. I also got the piercing (the name is slipping my mind) with only about two weeks of relief. I have two girls, 6 and 8, that fortunately let me sleep for a half hour because that is the only slight relief I get

    I want to assure you, I have been on Accutane for 9 months, this has not changed my migraines! Headaches are a side effect, but for me personally, it has not worsened them. I stopped for a month to see if the migraines improved and no luck. I think you will love the Accutane results, but be prepared for very dry skin.

    I hope you find some relief soon. Don't give up! Can't live like that!

    - @makeupbyjenpalmatier

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  23. migraines run in my family on my fathers side. my grandmother gets them to the level that she has a prescription for shots at home. they go in the side of her neck and she told me that the shots hurt every bit as much as the migraine but they r the only thing that dims the aura for her. if she is aware enough to feel it in the first five minutes when the aura begins to shimmer and gets a shot it reduces her down time by 75%, i kid u not. i feel very luckyu that i only get a migraine 2-3 times a year but when i do i would prolly crawl over hot coals and then dance over broken bottles just for 5 seconds of release. mine have a high sensitivity to smells. certain odors have sent me into a migrain nightmare tailspin so fast i cant even blink. my daughters are light sensitive as im thinking it sounds like yours are. my poor grandma gets whacked in the face with every single sensitivity all at once, sound, light, smell, movement. it makes me cry to see her that way. just as i can see in her face that she has one i also see in the set of ur jawline when u have one. i hope they soon find a test and cure for this agony. so... moral of my story is, "im sorry, i know how u feel". LOVE YOU LONG TIME

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  24. I've had chronic migraines my whole life too. And I can vividly remember my first one as well. I was playing with my friend outside when I was in first grade and then all of the sudden my head started hurting so bad I had to go lay down and couldn't move the rest of the day. I'm actually a recovering addict (10 years clean as of June) and part of my addiction was fueled by my migraines bc I just wanted the pain to stop. That being said I try not to take narcotic pain killers (but I do when I absolutely need to). I have found that Coca Cola actually helps when I have a migraine. Idk what it is bc coffee or any other soda makes me feel worse. Something about it helps take the edge off. Everyone thinks I'm crazy when I tell them about it!!


    I've tried every preventative medicine and the only one that kind of helped made me hallucinate and sink into a deep depression. My migraines have always come in phases, some months are better than others and some years are better than others. I try to just stay consistent in my sleeping and eating habits. I work out regularly. I eat gluten free bc of my migraines and l try not to eat much processed food. I've found that when I'm really taking care of myself that I feel my best.

    Not sure if that will help but just know you aren't alone in this.

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  25. Hey Taylor, my mom has suffered with chronic migraines for as long as she could remember. went to multiple doctors for help and didn't really find an answer until within the last couple of years. her doctor informed her about Arnold Chiari Malformation. its where your skull doesnt fully develop around your brain and therefore part of your spine actually presses against it. causing the pain. i would research it for yourself and see if maybe it's something you could have too? my mom is on abunch of medications and nothing takes her pain away completely but at least she knows what she's dealing with.

    hope you find answers soon.

    jackie d

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  26. Hey dear, I already left you a link on one of your videos months ago, but I'll try again... What worked for me is this https://www.amazon.com/GEOMETRY-DIVINE-SPARK-Serena-Alba-ebook/dp/B006IH6RWO I had ER-type of migraines from year 11 to around 16/17 as well as ordinary headaches in between. Nothing that official medicine offers was helping so my mum and I went along the line of alternative one... most things there didn't work either but this book was finally something that did. I suppose you won't believe it, but give it a go.

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  27. Some people, unfortunately do not and likely never will understand just how debilitating chronic migraines can be. I've had them as long as I can remember. I'm 41 and I have 2 kids (20 & 12) besides missing out on a lot of my own things growing up, I have missed out on many of their things as well. And having to make my daughter take my son to his dr appointments (he has high functioning Autism-Aspergers....he's just like Sheldon from Big Bang theory. Lol. And ADHD) or a school function because I can't do it sucks and makes me feel like a horrible parent!

    I had the opportunity to work from home for about 12 years doing animal rescue and running an online store, so stopped bartending and took it. When my sons father and I split up, I started working outside the house again. I am very fortunate for the job I got because it's truely a job people would give up a limb to have But its LOUD and there are off the wall scents and rusty dust and shit all around here and it's also very stressful! If I make a wrong move, someone could very well die.

    I've done alllll kinda of things to see if anything triggers it. I've kept logs of my days for months down to a sip of water at 2:30...etc. the only triggers I have that I know for sure are cigar smoke, heavy floral scents and anything vanilla scented. As much as I love bath and body works, I can NOT step foot into one of their stores EVER. But fruity scents like blueberry, strawberry or for example....yankee candle in salted caramel or chocolate layer cake....I'm perfectly ok with. Vanilla scent and cigar smoke will both cause an instant migraine but vanilla is so nice to me that It also makes me vomit in a matter of minutes. Other than those things I've got no reason for any other migraine I get.

    I keep excedrin migraine, 500mg naproxen, and imitrex on me at all times. I keep a few pieces of dark chocolate in my work bag in case I feel (just a headache) coming on cause sometimes that can help a little. My dr suggested topamax but I'm very hesitant to try it considering my job and what could happen if t effects me in a bad way. So I'm looking into other solutions currently. Fortunately, for me, the imitrex doesn't do to me what it does to you. I get no side effects from it. But unfortunately, I think it's stopped working for me because Tuesday morning the migraine that started Sunday that I tried to "ride out" got so bad I had to go to the ER. And I used to sometimes be able to sleep them off and that also no longer works! It's now Friday and I can still feel it in my temples and my 12-16 hour work days 4 days in a row does NOT help. Lol. But I was telling a co worker what a migraine felt like cause he said he's never had one (lucky fucker!!) and the best I could come up with is someone standing on your head jabbing ice picks into your eye sockets and temples. I think that got my point across.

    Anyway, I think I've rambled enough. But I do want you to know that not everyone is a cold hearted asshat. I truely have sympathy for what you go through. And I hope someday some genius comes up with a cure for this shit!! Maybe it'll be my over-intelligent, super socially awkward adorable son. Lol. Or my daughter who is in nursing school. Hey, one can dream ��

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  28. My heart goes out to you and all of the other commenters who suffer from chronic illness. I don't, personally, but I try as much as I possibly can to empathize with those who do because my mother suffers from both physical chronic illness (herniated/slipped/ruptured/bulging/you-name-discs -- her spinal structure is a train wreck) and mental illness (debilitating depression, which is of course exacerbated by the constant physical pain).

    The best advice I can give to other loved ones of people who are suffering from these things is this -- love shows up. There is a world of difference between saying "Let me know if you need anything" and showing up with/for things you already know they need. Don't wait for them to ask. When Mom can't get out of bed, I make sure she has food and clean laundry and I take care of her cat. When she can't stop crying over the dark thoughts that plague her, I hold her hand and I let her talk it out if she wants to -- and if she doesn't want to, it's romcom-and-popcorn time because that's usually a mood-lifter. It's all about trying your best to anticipate the needs of the person you love.

    I'm so sorry that you have to deal with rude, hateful comments. Anonymity enables cruelty. Please know the rest of us love you and support you and are endlessly thankful for all of the hard work you do for your channel and for us. ♥

    ♥BexLogic

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  29. Hey Taylor.

    I too have chronic migraines. I'm 42 and have been dealing with this since I was 13 or so. I have something called a chiari malformation in which my brain extends into my spinal cord.
    I've tried so many things to help manage the migraines and the only notable things for me is cutting out meat, massage therapy and taking treximet. I know the meat thing sounds impossible or annoying, I thought the same thing. For me, I noticed that the less meat I ate, the 'attacks' weren't as often. Massage therapy and treximet help with the pain and other symptoms.
    I'm sorry people feel the need to tell you how you feel and to act like its nothing. They have no clue! Me and the rest of our #baerrito family love you and support you xo

    Shannon

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  30. Hello Taylor,


    Four years ago I had a fall that lead to back pain. The pain was severe and drastically limited my range of motion in my spine. I saw a doctor about it who took some X-rays and said that everything looked fine and referred me to a chiropractor.

    Once I went to the chiropractor, he did more X-rays and again said everything looked fine and continued with therapy.

    After a while the therapy wasn't working so I stopped going. By now my vision was being affected, I was having numbness in my arms, and I started having migraines several days out of the week.

    The migraines had no mercy and always came at the worst times. I have a small house with only one bathroom. It never failed that there would be guests over when I would have to run to the bathroom and puke. Then I was have to walk back by the guests to seclude my self in a quiet, dark room where I cried until the migraine finally subsided. Side note, I NEVER puked, I always did everything I could to keep it down, so I knew something had to be going on.

    A year after the initial injury, I was no better and was now having all these other symptoms so I decided to have further testing. An MRI showed an old compression fracture that the other doctors had missed and other health conditions that required surgery.

    As it turned out, part of my brain was obstructing my spinal canal, and my cerebrospinal fluid was unable to circulate (chiari malformation). I had a very large cyst on my spine (syringomyelia). The doctors were surprised that going to the chiropractor did not paralyze me.

    After the surgery my migraines and most other symptoms have improved almost entirely. I gave gained almost all motion of my spine but I still have back pain.

    I went to have a follow up MRI of my spine and was told that everything looked good and was completely healed; therefore, "my back didn't really hurt anymore, it was just a mental thing". A radiologist literally told me that I just THOUGHT my back still hurt.

    I don't know which is worse - knowing that I will probably have to live with back pain my entire life, or the fact that others think I'm lying about it.

    I have to sleep on a heating pad every night. I don't want to take pain pills because of the negative connotation associated and the possible side effects. So, 4 years after the initial injury and 3 years after surgery, I'm just trying to accept the fact that this is something I just have to live with.

    Just know you're not alone, Taylor. I wouldn't wish migraines upon anyone. Only you can truly know how you feel. You can try to describe it, but only you can feel your pain. For someone to try to tell you that you're exaggerating your pain is almost worse than the pain itself, but I hope you can look past those people.

    Thinking of you,

    Chelsea

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  31. I'm sure you've heard all of this a million times...I started having migraines when I was maybe 12 or 13. I would look at someone and only see part of their face which is obviously scary at that age. I would have auras for an hour, then debilitating headache for an hour, the vomit for an hour. Then repeat. My mom is a pharmacist so I tried all the meds out at the time but usually had to go to the ER or clinic for shots to knock me out. I went through college still having these episodes at everyone just thinks your hungover if you can't go to class because you have a headache. After I was in bed for a week my mom sent me to a neurologist. We had always thought they were hormone related before. They found my sinuses completely blocked. So I had surgery and they hoped this would lessen my migraines. By this time I was on the Imitrex nose spray and that helped a little but I was still dependent on the ER and ice pack and a dark room for relief. Thankfully now after 20 years mine have actually subsided greatly which makes me think that hormones did play a slight role. And thankfully there is Maxalt which I am lucky works well for me. Unless a person has had one of these monsters they truly don't get it. I wish you all the best and hopefully some relief :) Thanks for making me laugh and realize I'm not too old to learn how to use makeup!

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  32. Hi Taylor. I've recently been diagnosed with complicated migraines/hemiplegic migraines which cause the right side of my body to go practically numb and emulate stroke-like symptoms. I also get the aura on my right eye and can't see. After all this has happened, the migraine comes in and it's the worst feeling in the world. I have to pretty much call it quits for the rest of the day and just stay in bed while running to the bathroom in case I have to puke.

    I know exactly what you're going through and I'm incredibly sorry that people are not more empathetic about what it's like to live with this. I'm lucky that I don't get these migraines very often but when I do, it's the most horrid feeling in the world. You're not alone Taylor and you have people who follow you and enjoy watching your presence online so much! I only hope and pray that modern medicine can advance more in the next few years so that some sort of cure can be found.

    Until then, rest in the comfort that there are people who know exactly what you're going through and understand why you say the things that you do in your videos. You're one of my absolute favorite people on the internet and I wish you the best in every aspect of your life.

    - Anais

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  33. Taylor,

    I am just this year, at age 44, starting to gain some ground over chronic migraine. In my case, Botox is doing the trick (the second time around), but it's a slow process and I feel so fortunate, as it doesn't work for everyone. I'm so sorry it didn't work for you.

    My neurologist is a headache specialist who is leaving clinical practice to concentrate on research. She says that there are treatments on the near horizon that are more effective than Botox and with far fewer side effects than triptans. Please hang in there! I know (like, intimately know) how hard it is, not knowing what to expect on any given day and not being able to escape not only pain but a whole host of other symptoms.

    I admire your spirit, your humor, and your work ethic. For every asshat out there who speaks up, there are very literally thousands in your corner, hoping for the very best for you.

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    1. Oh, and here is my current regimen, in case any of it helps you. My neuro is with Columbia University, where they have a team devoted to headache. The vitamin/mineral supplements I take are recommended by them based on fairly recent research (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4359851/ as an example).

      Botox every 3 months

      daily: 500mg magnesium
      daily: 400mg riboflavin (vitamin B2)
      daily: a B6-B12-folic acid combo tablet

      triptans as needed, up to twice a week: Imitrex nasal spray or injection, Axert tablets

      NSAIDs as needed, up to twice a week: Cambia or ibuprofen


      Delete
    2. Oh, god, I am spamming you. I'm sorry! I forgot to mention promethazine for nausea. It has some effect on headache, too, so it's my current nausea drug of choice.

      I will shut up now. Chin up!

      Delete
  34. Thank you for writing this and sharing with us. I've been watching and enjoying your videos for a while now. I knew you suffered, but had no idea that it was too this extent. I used to suffer from horrible migraines (the lay on the floor in a dark room throwing up for hours kind), but no where near your frequency. I'm one of those people who, when someone's hurting, never has any idea what to say. So I just want to say thank you for all your hard work.

    This probably won't help at all, but, like I said, I used to suffer from terrible migraines for years. However, it really wasn't too big a deal other than like one or two episodes a year. My mom also had migraines, more often than me, so I considered myself lucky. Then it got so much worse and I was having them multiple times a week and would have to run out of work as soon as I saw an aura starting. I saw doctors, had scans, the works, and no one knew what was wrong of course. Then, a funny thing happened. My apartment complex redid the landscaping. And I stopped getting migraines. I didn't make the connection until I was telling my mom over the phone that the apartment people finally got rid of these trees that leave a horrible mess when they bloom with these little yellow puffball flowers. My mom responded, "Oh I hate those kind. I get a headache whenever I'm around them." Sure enough, I discovered my trigger. I've avoided those trees whenever they are in bloom (and sometimes that involves running through a parking lot like a crazy holding my breath or just avoiding places all together when they are blooming) and I haven't had a migraine since *fingers crossed*

    I hate that you have to deal with stupid comments. But there's also a whole group of us who love and support you! And I'm so glad you have a medication that is helping provide some relief.

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  35. This comment has been removed by the author.

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    1. Hi Taylor-

      I'm a longtime viewer/reader for more than one reason. You inspire me as a fellow sufferer. I was diagnosed at age five, and my migraines and pain have continued to spiral out of control despite working with a top researcher. It breaks my heart to know I've fought this battle for three decades at this point. It feels like an unwinnable war- but it's people like you that make me feel a little less alone.

      I'm not going to recommend medications to you. Your physicians are better qualified. I've also ran through so many of the rescue medications. Imitrex was my savior for 10 years until one day the receptor was no longer doing anything. I've been through Imitrex, Maxalt, Rizatriptan, and right now Zolmig has been working well for me. Thank goodness Imitrex has started to work again a bit as well, but I'm terrified to take too much. I've also tried Cambia. When the Zolmatriptin (Zolmig) fails, the most horrifying part is waiting the 24 hours before starting a DHE infusion (terrifying when I think about what it does). I'm also on multiple preventatives, but am hypersensitive due to other medical issues. I'll admit that my doctor's insistence on supplements has at least helped my energy levels.

      More than anything, I want to say thank you. I'm so sorry that you're dealing with people who lack empathy and insight. I admire that you've managed to forge your own way, pain be damned.

      I've struggled as a professional because of my pain. Because I can't always trust my eyes. And I have a visual job. At first, people are somewhat sympathetic. Then they start to think you're making it up. I started 2016 with 89 straight migraine days that took hospitalization and multiple infusions to break the cycle. I honestly wondered if I'd ever see another day without pain. Even now, and with aggressive treatment, if I have only 3 days per week that's a great week.

      You're not alone. Thank you for sharing your voice. Please know that there are so many of us who lack our own.

      Delete
  36. I've watched you for years now and have always admired your work ethic. When I was 12 years old, I began getting migraines. I couldn't walk, see, do anything besides throw up. Thankfully, after a number of doctor visits, I got glasses shortly after I turned 13 and the migraines came to a halt. Now it's once in a blue moon that I'll have one. I still suffer from daily back pain (thanks for that one, DDD-cup boobs) and headaches, I'm sure it's NOTHING like what you go through. And since I'm sure you've gotten your vision checked throughout your life, I have no real advice to give you. But for those of us who care about you and see what you go through, we will understand when pain gets in the way of life. And we're here for you. Whether you need a break from social media or just a place to rant, we'll be here with whatever we can offer you. You have created a community that deeply cares for you and your well-being. I sincerely hope you will find relief and live your life exactly as you wish, pain free.

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  37. I have Hashimoto's thyroiditis, an autoimmune disorder. I struggle with debilitating fatigue every day. There was a point that I couldn't stand for longer than 2 minutes, hair falling out, insimnia to the point I would wake up every 15 minutes, weight gain of 60 pounds, cystic acne, and low periods of depression with short bouts of hyperactivity and mania. I'm 33, symptomatic since my late teens. Years went by with family members telling me to "suck it up" or "if you don't at least try your entire life is going to pass you by." Can you believe how utterly and devastatingly CRUEL that is to tell someone?! WE KNOW OUR LIVES ARE PASSING US BY ASSHOLES, THATS WHY ITS SO MUCH MORE THAN PHYSICAL PAIN OR FATIGUE. We have to press pause on LIFE with zero choice. Even now I wrestle with resentment towards others who get to have normal days- waking up feeling rested, working a full work day, enjoying your children, exercising. Most people have huge dreams and aspirations, I long for normalcy more than anything. I don't know you personally Taylor, but I'm here. You are a joy to watch and bring happiness and contentment to so many people. I know you do for me and I thank you. Thank you Taylor.

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  38. This is amazingly well written and I actually felt like my "invisible disease" was understood while reading it. It's a brave move to open up about your health and it is greatly appreciated. I have suffered from chronic migraines and fibromyalgia for years. Two illnesses that are often written off because otherwise its sufferers appear as healthy functioning people... at least on our good days.
    I too have seen multiple neurologists and rheumotologists, gave up dairy and gluten and everything under the sun looking for an answer. Shots and pills and home remedies... it can feel never ending. Like you, I am still searching. You mentioned a fast acting shot in one of your last videos and I was wondering if that is still working for you?
    Thank you so much for sharing. From your confidence with your skin and sharing the message of body-positivity to opening up about your struggle which is a topic that isn't really talked about all that much - I greatly appreciate your work as a content creator. You feel Like an old friend when I watch your videos and someone I can relate to.
    I hope you find something that works because this search for relief is incredibly frustrating. If I ever do, I'll be sure to share.
    Thank you for your message. I am going to share it with friends and family.
    - Elodie

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  39. I vividly remember in the introduction to one of your videos you had woken up feeling good and you said something to the extent of, "I can't believe that this is how so many of you feel on a daily basis." I had a good chuckle at that, because I've thought that a few times on the rare occasion I feel like a normal human-being. This post speaks to me on a spiritual level, so much so that I'm going to share it for my family and friends who think that 'a glass of water' or 'a bit of fresh air' solves all problems.

    I suffer from chronic migraines in conjunction with complex partial epilepsy, and chronic pain and fatigue as a result of an auto-immune disorder. After visiting some of South Africa's most renowned neurologists, I finally found one who managed to reign in the migraine monster just a little bit. He did so by putting me on a high dose of daily beta-blockers and courses of cortisone injections in my neck when I relapse.

    In 2015 we had a country-wide shortage beta-blockers and I relapsed within a week; that was when I truly valued just how well they work for me. My neurologist mentioned its often a course of treatment that so many doctors overlook. I'll still suffer a migraine once or twice a week, but if I catch them early I take a Maxalt (the drug name is Rizatriptan) and head for bed. If you haven't already tried beta-blockers, it may well help you!

    I am in awe of the way in which you continue to do what it is you do despite suffering on a daily basis, when on so many occasions I can't even get out of bed to face the day ahead. But I hope that this also serves as a reminder that it's ok not to be ok, and on those days, you need to take the time to look after yourself before you worry about any of us.

    With love and admiration,
    Tayla Stephen
    Cape Town, South Africa
    xxx

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  40. Since I was around 16 years old (34 now) I've suffered from both migraines and cystic acne. I struggled from that point forward with a rollercoaster of "advice" and "treatments" from countless numbers of people a lot of which was unsolicited.....and I don't even have a blog or a youtube channel. I admire that you can get bombarded with advice on the daily and keep a positive mind frame.

    Personally, I found relief 1.5 years ago when I found out that I have Mast cell activation syndrome (histamine intolerance). This condition is grossly overlooked by many doctors as diagnostic criteria was only proposed about 7 years ago. After taking Zyrtec daily, for 3 months I was able to get my symptoms under control....maybe 1 migraine a month and 1-2 pimples a month. I then moved to a low histamine diet and was able to identify trigger foods/ingredients which caused flares for me. The combination of low histamine diet and Zyrtec has kept me migraine free for 7 months and counting. I still get occasional pimples but they are not the deep painful cystic type so I can deal with that....I hope you find something that works for you!

    --Alexis--

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  41. As someone with chronic migraines and other chronic pain conditions, my heart goes out to you. What has helped for my migraines is nortripyline and topomax.
    I saw that another poster suggested getting checked for Chiari Malformation. I would highly recommend you doing that as well! An upright CINE MRI is the best imaging you can have done to get a really good look at the area in question. I suffered for years before finding out that Chiari was causing so many of my problems, and that is far too common for a lot of chiari patients.
    There are 9 top chiari neurosurgery specialists in the US. I'll list them below for you in case you're interested in contacting one of them. They might have a recommendation for a neurologist who is knowledgeable about chiari near you.


    Dr. Fraser Henderson
    Spine Team Maryland - Specializes in Problems of the Craniocervical Junction
    http://metropolitanneurosurgery.org/...
    8116 Good Luck Road, Suite 205
    Lanham, MD 20706
    (301) 654-9390/91/92
    (also has an office in Bethesda, MD)

    Dr. Faheem A. Sandhu
    MedStar Georgetown University Hospital - Neurosurgery
    https://www.medstarhealth.org/docto...{}
    10401 Hospital Drive, Suite 101
    Clinton, MD 20735
    (301) 856-2323
    Also has offices in: DC; Prince Frederick, MD; Chevy Chase, MD

    Dr. Michael J. Rosner, MD, FACS, FCCM
    George Washington University Medical Center - Neurosurgery
    http://www.gwdocs.com/physicians/mi...
    80 Doctors Drive, Suite 4,
    Hendersonville, NC 28792-720
    Primary: (828) 684-1076

    Paolo A. Bolognese, M.D.
    Chiari Neurosurgical Center at NSPC - Specializes in Complex CMs
    https://nspc.com/physician/paolo-bo...
    1991 Marcus Avenue, Suite 108
    Lake Success, NY 11042
    pbolognese@nspc.com
    (516) 321-2586 | (800) 775-7784
    Known to do video consults for $300; prefers upright MRIs.

    Dr. Jeffrey Greenfield
    Weill Cornell Brain & Spine Center - Specializes in Pediatric NS, but does take adults.
    https://weillcornell.org/jpgreenfie...
    1305 York Avenue, 9th Floor
    New York, NY 10021
    (212) 746-2363 | (646) 962-0118
    Known to do second opinion consults online for $300 and phone consults for $500.
    CSF Presents “Chiari CARE” - Dr. Jeffrey P Greenfield

    Dr. Anthony L. Capocelli
    Ortho Arkansas - Orthopedics & Sports Medicine
    http://www.orthoarkansas.com/capoce...
    10301 Kanis Rd.
    Little Rock, AR 72205
    (501) 604-6900 (800) 264-5633

    Dr. Eric Trumble
    615 E. Princeton Street, Suite 540
    Orlando, Florida 32803
    Phone: (407) 236-0006 (Julie)
    Known to do free email consults for dx’d Chiarians, if they intend to use his services.

    Dr. David Frim
    University of Chicago Children's Hospital (known to also treat adults)
    Pediatric Neurosurgery
    5841 S. Maryland Avenue
    Chicago, IL 60637
    Office Phone: (773) 702-2475
    Office Fax: (773) 702-5234

    Dr. Gerald Grant
    Stanford University - Specializes in Pediatric NS, but does take adults.
    https://med.stanford.edu/profiles/gerald-grant
    730 Welch Rd. Mary J Johnson Bldg 2nd Fl
    Palo Alto, CA 94303
    (650) 724-4270

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