Welcome to Shades of Migraine, a podcast
series created by the Association of Migraine Disorders. Migraine isn’t black
and white it’s blurry and shadowy, but there are many forces at work trying to
change how we think about and deal with this disease. We hope you’ll enjoy
listening to a wide variety of voices including the perspectives of both
people living with migraine and those that are trying to help. Each will share
the unique shade of migraine. We once again have the pleasure of speaking with
Katie Golden – a self-titled professional patient, as well as migraine and pain
blogger, writer, patient advocate, speaker and ambassador. Today Katie will discuss
some pretty emotional topics including the impact of migraine on her career and
her relationships as well as national issues like the opioid epidemic, Headache
on the Hill and finding a cure for migraine disease. My name is Katie Golden
and I have chronic migraine disease. When I was five years old I had my first
attack. I was on my way to my friend Sarah’s birthday party and all of the
sudden I couldn’t see. I had an aura which I now know was an aura, and
the pain, the head pain that came with it and the nausea and the sensitivity to
light and sound. And I remember vividly, even at that young age, crying
uncontrollably for hours. And this happened another time and so my parents,
who neither one of them had experienced a migraine attack, they took
me to the doctor and I was diagnosed with migraine disease. It was pretty
easy to be diagnosed because I had an aura. So for me an aura is like a
zigzagging shape but it’s kind of in a crescent moon. And it starts small then
it gets bigger and bigger and bigger until it goes out of my field of vision. So growing up I had migraine attacks.
They were very very sporadic. Sometimes I’d have one a year, sometimes one a
month, sometimes one a week. And then as I got older, it was right before my 30th
birthday I had a migraine attack and it never stopped. That was six years ago… This hurts this hurts my entire body. The symptoms that go along with it would take me out of school for not just one day during the attack but for
two or three days because I just, my whole body aches… feels, I think the best
description is I feel like I got hit by a truck. So it took some time, took a
few days to recover. So I mean there were times that I missed a lot of school
because of it. And then when I had this migraine attack six years ago that has never stopped I thought, okay, well I’m gonna figure this out. It can’t last forever. There’s no there’s no way this can continue. So maybe, maybe this
okay, it’s been a month now but I’m changing my diet. I’m on a new medication.
I’m doing this and that. And then two months in it’s still not going away and I still couldn’t return to work. Then I started to get concerned and then in the three month mark my doctor finally said, Katie you’re you have chronic migraine.
What ,what do you mean chronic? Like I didn’t know that was a possibility… that that even existed. The technical definition is if you have chronic migraine you have fifteen days or more a month where you experience migraine. I’m for me it’s 30 days. II’s 24/7, 365… To minimize my pain I do yoga. That took
a long time to be able to do. When you have a chronic
illness no matter what it is it’s very hard to get up and get moving. You know I credit to my lovely partner ,my better half,my boyfriend Kevin. He kicked my butt and was like enough is enough. You need to be able to walk down the
street without getting winded. So I was lucky enough to be able to have a
personal trainer who really helped me. It was rough. It was really, really
rough. But having some physical strength, gaining some of that back, makes me feel stronger. And it makes me feel a little bit more in control of what’s happening to me. For example, earlier today before I just was starting to go downhill, meaning pain level was spiking and I was just not in a good place. So I stopped, I rolled out my yoga mat, I went outside, and for a good 20-25 minutes I
just focused on the breathing, and the movement and tried to wash away everything else. And it rejuvenated me. I think that exercise in any form…
gentle stretching, walking, I think it’s so important for anybody with chronic migraine to do, and I know that it’s very hard… I was the youngest vice president at a
small community bank that I had been with for eight years at the time of my
diagnosis of having chronic migraine disease. I loved my job, I loved
the people I worked with. I was in commercial real estate lending. I would lend money on hotels or construction loans for subdivisions, and had people working under me. It was just a really, really great environment. and then all of a sudden, literally in a day, my life turned upside down. Of course I didn’t know it at that… on that day… My company was extremely, extremely
helpful through throughout the entire process which is not the norm. All too
often I hear stories of people who try to work because they don’t really have
another option and employers are not as as great. So I tried to work for two
more years. Literally I would… it got to the point where in the morning I would wake up and to see how I feel and I would email my team and say I’m coming in today or I’ll be in at noon, or I’ve got to work from home today or I’m in bed don’t even think about calling me. And so after a while that wasn’t fair. It wasn’t fair to my co-workers, who had to pick up my slack. It wasn’t fair to my clients.
And I was very upfront with my clients, what was going on because, again, a small
community bank you know you’ve developed great relationships, and they all knew what was going on so they gave me a little bit of slack, but it just wasn’t fair. And it wasn’t fair to me because my health wasn’t getting any better and it was just a… it was a horrible cycle of me either working or being in bed , and I just wasn’t making any progress. And so after two years my doctor said you really have to stop working. I am NOT one to just sit around and say
woe is me so I found a website, migraine.com which is a great place
for people to interact. They had writers talking about their own personal experiences and I’d found it a really great resource and a great comfort to me at that time. And I said you know what, I can write like that. So I literally wrote three articles. I emailed their general email inbox and said, do you need writers? They said well… I got a call like two days later. They said, normally our writers already have a blog . They’ve been in the space. You
know. They’re not newly diagnosed, but we think that what you’re saying has… you have a different voice that you can add into the mix. And so they took me on and
from there life has changed dramatically. I mean it has absolutely just given me a
purpose that I didn’t think I would I would be having. So I’ve… writing for migraine.com. They have over almost 200,000 Facebook
followers so I get feedback all the time from what I write, and people are asking
questions or commenting, and it has just really opened up my eyes to how this affects so many people, and not just their lives and their work, but their personal lives, and you know that everybody has varying degrees of the disease. So writing then really turned into
advocacy for me. I couldn’t really stay quiet about things that I was
seeing going on that just didn’t… just people need to be more educated
about migraine and it’s so cliche but it’s not just a headache. Writing is definitely my brain’s yoga. It’s very cathartic. There are things that I write that I probably wouldn’t tell somebody in person, and that took a little while to get comfortable with being that vulnerable. But again, the feedback it’s like well somebody… somebody needed to hear that because they say, oh my gosh! I thought that was just me! I thought I just felt that way… or, I didn’t know that this was an actual symptom of migraine. That it, but it’s all related and so that’s what really keeps me going. But yeah, I definitely find that
writing not only… it helps ME tremendously to get it out. But yeah, it’s amazing when you see that it’s helping other people. Headache on the Hill is an event that’s put on by the Alliance for Headache Disorders Advocacy. It’s a two-day event once a year. In 2017 they just had their 10th anniversary. People from all over the country flock to to Washington DC. Day One we all gather together to understand some of the issues that we’re facing in migraine, and they educate us about how
to talk to our senators and congressmen who we are gonna meet with the very next
day, and ask them for certain things. “The asks.” it’s called an “ask” when you go
into an office and you have an agenda so we get educated on what those asks are. The most recent asks are obviously more funding for migraine research. There are 36 million Americans who have migraine and with NIH funding we can only get 25 million dollars in funding. That’s less than one dollar of research
funding per person who has this disease. That’s mind blowing! There are other
diseases that have a much smaller population of people that it affects, and they get 200 per person or 300 dollars per person. It’s just very disproportionate and it really goes back to the stigma that’s attached to
migraine, and you know people who don’t get it… just you know don’t realize entirely how it can affect you, so that is you know number one the big big push with Headache on the Hill We go into the into the offices and sometimes you meet with a senator or the congressman or woman… but most most the time you’re talking about like their health legislative person. And so we have materials to leave behind but the really amazing thing is that we get to tell them, everybody in our group, you get to tell them your story and that seems to
be what really gets them excited or thinking more about… oh… well. nobody…. you’re not on our radar we’re not even thinking about that but now that I just realized that you can’t you literally cannot work because of this, or you know a friend you know that I’ve met he’s like you know I pass out at work
because I have cluster headache… you know when you hear those stories I think they finally gets.. They’re like, oh alright, maybe we should pay attention to this. I’ve been three times and is probably the most exhilarating experience and it was
definitely my first foray into advocacy. In a year 31 billion dollars will be
lost in productivity due to people who have migraine. 31 billion dollars…! We get 25 million in research…. If you put more money into research the economy is actually going to do better because…. Because those of us who have this will be able to be more productive and contribute more to society. My main squeeze, my boyfriend Kevin, we
met at a house party seven years ago and at that time I was episodic. I had them every once in a while and I actually do remember being at his house and I had a migraine attack and I didn’t use that as a ploy but like I really could not drive back home… so I was stuck on his couch for a little longer than he anticipated… But then then I became chronic within eight or nine months of us dating. It’s amazing… it’s seven, you know, six years later since I became chronic and that guy over there… is pretty spectacular. The fact that he stayed around… I hear too many stories of people whose relationships marriages break because of this. He goes to doctor’s appointments with me, he researches things, he sends me articles… he came across this or have you heard about that… He’s my partner. He’s… I wouldn’t be where I am if he hadn’t pushed me, you know, he hadn’t pushed me to get off the couch and you know start to exercise and get stronger. I wouldn’t be here if he wasn’t like, you
know what? You CAN reinvent yourself. Forget about what you used to do and
embrace the writing, and the connection that you can have with people, and the education that you can bring. And he’s my biggest cheerleader. This one Christmas my mom wrote wrote Kevin a card and it said, thank you so much for taking care of our “defective daughter”. It’s still on our refrigerator to this day
and so he’s kind of a saint. My name is Kevin Lana burg and I am the
boyfriend of Katie Golden. We met about seven years ago at a house
party and very quickly started up a relationship, very passionate, fell in
love. We were off to a tremendous start. And then about eight months into our relationship, her migraines, which had been episodic, something that would pop up every once in a while, you know, once every few weeks, knock her out for one two three days maybe, they became chronic. She started having them every single day
and that was quite a change in her life, a change in my life, a change for our
relationship. It was a challenging situation when we got the diagnosis of chronic migraines. And for a long time it was not accepting that this was going to be a chronic condition. It was: we’re in this together because we’re gonna find the cure. We’re gonna find the thing that fixes you. And I remember I had these thoughts and we’d have these conversations where I said, I’m with you here. I want to support you through this. I am supporting you through this. I don’t think I can do this indefinitely but don’t worry I’m not going anywhere anytime soon. And in my own head I would always think like, I don’t think I have another year of this in me, but then we’d get to that year point and our love was still strong… is still strong… and we just always found a way to push through it and eventually came to accept that this IS a chronic condition. This is who she is… what she has… but she’s really reinvented herself in an amazing way and our relationship has changed in a way that we make it work. We find a way to take advantage of the good times and support each other through the rough times. It’s amazing seeing someone who has gone through such a personal transformation as painful as it is… as much as you would never wish migraines on anyone. The fact that she has completely changed. Katie has gone from being a banker and focused on a career in that field, to now she is a writer, she is a patient advocate, she is a fierce defender and promoter for those that have this
condition, and fighting for more research funding and hoping that eventually better cures can be found. It’s truly inspirational to see that
journey that she’s been on and to be a part of it with her. I believe that eventually a cure will be found for migraines. I believe in the power of science. I believe in the research that is being
done. Currently, I know there are a lot of new things on the horizon that we’re
excited to try out in the coming years, and as science continues to advance
at a more and more dynamic pace I believe we’re gonna find cures for this awful condition. Working in healthcare communications it’s really been challenging to see how migraine disease is perceived by the broader public. They think, oh it’s just a headache that you get every once in a while. They don’t understand how truly incapacitating it is for those who have
this as a chronic condition… The four million Americans that have chronic migraine disease and so there’s a real need to educate the public to better understand the severity of this and the impact that it has on our country and on the world. One challenge of being a caregiver is caregiver fatigue which is when you reach that point where you are the
primary resource that your loved one relies upon and well largely you’re driven by empathy and understanding you reach a point where you realize you just don’t have as much to give and I think it’s important to to allow yourself to accept those moments and do not self judge too harshly and to acknowledge, okay I’ve reached this point of caregiver fatigue. it doesn’t mean I’m a bad person, it just means I’m at that ropes end and we need to expand the network of caregivers that we call upon. So when Katie and I reached those
moments we say, okay, instead of it just being about us and within our own relationship and providing the caregiving that way. Let’s reach out to family members and friends and rely on them. and so I really encourage people
to never get in a situation where you are the only one who is providing
support to someone who has chronic needs, Be a primary caregiver but also make
sure there’s a network that’s backing you up, that can be relied upon in times when you yourself need a break and a respite from your responsibilities. Early on in my diagnosis I found I was,
you know, on the internet just trying to find things and so I came across The Spoon Theory. The Spoon Theory was created by a woman named Christine and she has a blog called ButYouDon’tLookSick.com. She actually has lupus. So The Spoon Theory applies to not just those with chronic migraine disease but with any chronic illness. The basic point was that she was with a friend at a restaurant or something and her friend said tell me what it’s like to have this disease and Christine was like, I’m and give you the regular answer I give everybody else. And her friend was like, no no I really
want to know and understand. so Christine grabbed all the spoons she could in the restaurant, and you have one… is there one more spoon over there? All right I’m gonna give you… okay, so I go through my day and we each have three
spoons. I’m chronic. I have a chronic illness and
Kevin doesn’t, so when I was working, if I would get up and go to work I would be exhausted at the end of that…. I had to get up, take a shower, put my makeup, on dry my hair, drive all the way out there… and so to me spoons is like currency. How much energy does that take for you to get up and go to work? Zero spoons… maybe half a spoon? That cost me a spoon so I only have two for the rest of the day. He’s got three so then I have to go to work and you know deal with all that
entails and then come home and so that took a whole… that maybe took more than one spoon, and so then I’ve got one spoon and it’s six or seven o’clock at night. What am I gonna do with that? Because how many spoons would it take for you to deal with work? ONE spoon. I still have two spoons left. Yeah, yeah your stressful job. That definitely cost you a spoon but then I gotta got home and we
need to eat. I don’t like cooking and you’re a good cook but sometimes
we’re both exhausted. You know we’ve lost spoons so it’s do I
make dinner? do I do laundry? do I go to a yoga class? Even though that’s a
wonderful thing for my body that’s gonna cost me a spoon. That’s energy so what am I going to do with this last one? And in a relationship we talk in spoons as in, okay, I only have one left you have two. These are the things we got to get done.
Who’s doing what? It’s really a great metaphor for when we talk with our friends and family. We’ve all shared this story where they come to understand, okay, it takes more energy for Katie to do certain things. She has a limited number of spoons and so they’ll say, oh, I understand you don’t have enough spoons for this, or do you have enough spoons for us to do this. It’s just a really great way of helping people to understand the limitations and have a way to communicate back and forth that resonates and it really facilitates better
communication. Yeah, yeah, my family, my friends have all really, really adopted it. It’s pretty good. Again, I really thought when I got the diagnosis that I’m gonna find a cure, I’m gonna, I’m gonna, find whatever it is, I’m gonna
change my diet, I’m gonna do this and that, and then it’ll just stop, it’ll justgo away, but then I realized there… is no cure for migraine at the moment.
Hopefully… I am hopeful in the future that there will be and so it became less
about trying to find the cure and more about how to manage my pain and my
issues and all of the other, you know, symptoms that go along with it, and so
once I was able to go through the grieving process and actually reach
acceptance it made it… that also gave me a little bit more power in feeling like
I had some control over it. First of all I would say to someone who
has migraine, you need a specialist. Your general practitioner is going to be a
great resource it’s going to be a great person to, you know, first diagnose you
maybe, but to really manage your disease you need to find a specialist. Headache.
specialists are in high demand. There are only 527 in the US that specialize in… they’ve taken as an extra year of study, so that their focus in medicine is on
migraine, headache, cluster disorders. So that is really, really important but I
know it’s very hard because you could live in a rural town and your nearest
one could be a flight away, but I think it’s important to get to the right
person. Also I think the patients need to understand that they, the doctors, work for them. You can fire your doctor. Do it! If you’re not happy, if you don’t think that they’re listening to you, if they don’t believe you, if you feel
degraded and demeaned by them… That’s the wrong fit and that’s not your fault, that’s their fault so please get second opinions. I think that’s just really important. I think a lot of people don’t push back on their doctors and I didn’t at first, you know. I didn’t…. you know, in other situations but then I got educated and then I found the right doctors who want to… it’s a partnership. And that’s the way it really should be. You should never walk out of a room saying, I have no idea what…why… we’re going down this path, you know, with this new medication. Or come back in three months and we’ll just you know see how it goes. If you don’t understand what’s happening don’t leave the room, you know. It’s hard because they are patients, you know, in the waiting room but you waited your turn too and so you’re deserving of their time. So when I became chronic the pain is SO intense… and it’s crippling, it’s crippling even if you just have one migraine a year. I don’t wish that on anybody but when it’s
a constant thing when it is an everyday: here I am, I’m hitting you, I feel like I
got hit with a board upside my head, or there’s the ice pick… The pain is ridiculous… I can’t really… it’s… there are no words to really describe it. And so there are a multitude of different ways to manage that pain. I believe in a balance of self healing measures like yoga and meditation which I practice. Other people could do biofeedback and cognitive behavioral therapy but then I know that there are medications out there that really do work for me. I’ve gone cold turkey on things… on everything… and that was pure hell. One of the things that I do have to use,
which I use responsibly, is I use opioids. It helps if I’m going into a social
situation and or I have an event to speak at, you know sometimes I might take
a half of one and it will give me a little bit of boost a little energy and it will take the edge off. For me, they don’t make me sleepy. Everybody reacts differently to them, and I work very hard ,with my doctor
you know, she’s fantastic about… you know, parceling them out and I’m
good and responsible about using them. But what’s really important I think
overall is having more research so that opioids are obsolete. That there are
other pain medications out there. I recently had a friend pass away from an
overdose. He was originally using opioids and then that went to heroin and he was a businessman. He was in his 30s… He was married with two wonderful children and the opioid epidemic… is it’s real but there are people… there are people who… there aren’t many other options at this moment, and…. you know, there’s it’s just
such a fine line… I I don’t want to see another person die from… I don’t want to
see another family go through what my my friend’s family went through… To find outmore about Katie you can visit her website goldengraine com. In an upcoming episode we will be
hearing from Dr. Robert Shapiro, a neurologist who specializes in headache
disorders. He is also a professor of neurological sciences at the Lerner College of Medicine at the University of Vermont. Dr. Shapiro will be talking to
us about the financial burden of migraine disease, increasing pain
research funding, Headache on the Hill, and the opioid crisis. Thank you for tuning in to Shades of Migraine. For more information about migraine disease please visit migrainedisorders.org.

8 thoughts on “Spotlight on Migraine – Episode 2 – Katie Golden: Living with Migraine Disease”

  1. Thanks for making this video Katie – I have chronic acephalgic vestibular migraine – 24/7 365 ebbing and flowing of every kind of aura. It has taken a long time for me to accept that this is chronic and it isn’t going to go away. We are trying new meds with my neurologist trying to get it under control so that I can continue working – I am a coder and I write software for libraries. I really resonated with so much of what you said! I am still “on the couch” – I used to be a gymnast and run 10Ks every weekend – and now I can’t even walk up and down stairs without someone holding on to me – the physical fitness I have lost is so evident. It is humiliating having to put my hand up at work and ask for someone to assist me downstairs so that I can go to the toilet. When I tell people I have migraine they always say “oh I get migraine too” or “I know someone with that” and when you ask them about it it turns out they have self diagnosed their occasional headache as migraine and are now imagining that what you have is the same thing – when it is so different. The stigma is based on people trying to equate it to something they understand – it is based in empathy, but it is really impossible to understand a chronic condition if you do not have one or know someone very closely who has one. Thanks for being an advocate for greater understanding xx

  2. It's hard for me to even walk and I hate it. My dad can't afford the help I need and my migraine hasn't gone away since last year. It's such a lonely feeling knowing that no matter how hard I try, my best isn't good enough and I can't control the pain. I wish I had a simple headache cause at least it would go away. Thankyou. I really needed to hear this.

  3. Thanks for sharing…I am from India… sorry for your pain but feels good that there are people apart from your self who truly understand your pain….I have chronic migraine for quite a while now and everyday feels like hell…it's like you want to go out and be free but no matter what you can't find the way out..and it's frustrating… it's very hard to explain to others what it feels like especially to someone who don't have any experience…I don't even remember if in my entire life was there anyone who didn't said to me just rest and it will go away but no one understands that how hard it is to even rest and wait for that pain to even get reduced a little…

  4. Thank you for sharing! I experience migraine attacks as well & they're HARD! I've been in bed all week. I haven't worked in almost a year and I had to discontinue going to college, in which I've incurred fees…it's truly depressing when there's no income & when no one REALLY understand or try to understand my experience. At times, I just wanna be alone because it hurts to talk, breathe, just to live a simple life is hard. I'm at my wit's end…I'm going to do all I can to change my diet, exercise (as much as I can)…I'm claiming relief & healing for us all. 💞💞💞💞

  5. Been dealing with migraines most of my life. They come and go,but when they come like Katie is saying your body aches,nausea, dizziness, can't stand noise or light. The worst part other than the handicap and pain is people qho have never experienced migraines of sny kind do not understand. God bless people who have to deal with this pain and I pray for your relief.

  6. Omg umm in the USA you can fire your doctor!?? In Canada you get 1 to zero doctors and you can't upset them or else you are black listed and can never get another doctor! Don't go behind your doctors back. A second opinion will get you no health care. You can't be picky in Canada.

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