Sick, I Swear
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Sick, I Swear
Hammer To The Head: Deena Migliazzo On Chronic Migraine
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Deena shares her powerful 25-year journey with migraine from her first symptoms at age 3 to becoming a leading advocate for migraine care and awareness.
Misdiagnosed early on, her condition turned chronic by age 20. Deena endured decades of medical gaslighting, so many failed treatments, and endless battles for care before discovering relief.
She now leads The Migraine Network, offering community, support, and advocacy. Her work spans from running support groups to pushing for policy change on Capitol Hill, giving a voice to millions living with this invisible disease.
Learn more at TheMigraineNetwork.com or follow on Instagram/Facebook @TheMigraineNetwork
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Happy Healing, babe!
Dina's Childhood Migraine Beginnings
Speaker 1All right , Dina , it is so good to have you here . Thank you for taking your time to come talk about your advocacy and your journey .
Speaker 2Well , first of all , thank you for having me here . I'm very excited to be here to share my story . My journey started when I was three years old . I had early bad stomach ache that would result in just hours of vomiting , which then my parents would rush me into the ER . At that time there was no family history of any symptoms that I was experiencing . In parallel , my brother , who was only two years older than me , so roughly around five , would get these episodes of light sensitivity , severe head pain and then vomiting . So there would be two kids getting rushed into the ER at the exact same time , and we were gaslighted a lot . Growing up we were told that we're seeking attention . Every medical test came back negative and eventually doctors started thinking maybe it's epilepsy , because they would . Both kids would puke a lot . We were tested for epilepsy and were diagnosed with silent seizures and were put on anti-seizure medication and life went on Around . The age of 15 , head pain came into the picture for me , and my brother slowly just stopped having the symptoms he had . As a child .
Speaker 2I was revaluated and diagnosed with episodic migraine , which is just a migraine that comes here every once in a while . It's not considered chronic . Chronic is more than 15 episodes a month by . By the age of 20 , my migraine turned around . I went from completely functional to 100% debilitated , and that was the beginning of my chronic illness journey .
Speaker 2At the exact same time , my mom collapses , becomes paralyzed in the side of her face and gets rushed to the hospital and four years later is diagnosed with hepalegic migraine , a migraine that mimics a stroke . So up to this point , like there was just no family history of anyone having migraine . And then my mom becomes debilitated , I become debilitated , all while my brother just kind of I consider like outgrew the disease . He just doesn't have migraine anymore . So from there it just was like an uphill battle for both for my mom , because I became a caregiver and then also a patient with migraine and the next , the first four years of my 20s , was just a uphill battle traveling to three different states for second opinions , be gaslighted , be told there's nothing else we could do for you . You're too symptomatic to medications for us to be even willing to try something else . So it was just a journey . I'm going to pause there . That was a lot shared .
Speaker 1So is there like a theory as to ? Do you guys have a theory , do doctors have a theory as to why , all of a sudden , your mom then became debilitated . Around the same time , migraines just popped up .
Speaker 2So when we were evaluated I grew up in California my brother and I were evaluated by Stanford Children's Hospital and at the time we thought we had epilepsy . They were very confident because for kids that are just , in general , anyone that has migraine . You will have an abnormal EEG . It's just one of those things . But back in the 90s migraine wasn't really researched in children as much as it is today , wasn't really researched in children as much as it is today . So there's just that huge education gap . But one of the doctors we saw said , told my mom and I remember it was the first appointment we ever had with this doctor he said this is a genetic disorder .
Speaker 2You or your husband will end up with this disease , probably in your fifties . Your son will most likely outgrow it and your daughter will get worse . My brother outgrew it by the time he turned 15 . My mom turns 50 . And like two weeks later she's in the hospital and I turned 15 . And then I started experiencing head pain and as I continue to get older it just got more and more debilitating . Now , like what we know about migraine , hormones for women play a big factor . So it kind of correlates my journey with , like , how your body changes over time with hormones and the same thing for my mom going through like menopause . That might've been just the trigger .
Speaker 2But looking back , my mom , like my mom , was never educated on migraine . Because no one told my mom your kids have migraine , it was always epilepsy . So my mom did all this research on epilepsy . So what she got diagnosed with migraine like we just got a different picture of the disease , meaning that migraine looks very different for everyone . My mom has stroke-like symptoms .
Speaker 2I have head pain , very asymptomatic , like very atypical migraine symptoms that like nausea , light sensitivity , but my mom has paralysis on the side of her face , can't walk , uh . So then we started doing research that I like clicked for my mom that , oh , like I've always had head pain , like throughout my life , but like it wasn't that bad , I could just take a Tylenol and it would be okay . And then my mom's an immigrant to this country and my grandmother spoke very broken English and my mom remembered growing up that her mom would say like she needed a dark room and that her head hurts , just like give her some quiet time . Um , so it is genetic , like it . Then it clicked for my mom and me that oh , my grandmother also had migraine . It's just like we weren't educated on migraine . I had it since I was three , but no one ever took the time to explain what the disease looks like and how it's so different for everyone .
Speaker 1Of course it's the women , I mean . I guess the hormones play a part in everything .
Speaker 2And in my mid-20s my menstrual cycle changed really drastically to where I started having severe pain , to the point where I was like the pain was worse than a migraine . So I was . I saw a few OBGYNs and I was diagnosed with adenomyosis and that's just scar tissue on the outside of your uterus . So once we our like , the doctor's theory was let's stop your menstrual cycles to hopefully stop your pain and the disease getting worse . By doing so , within three months my migraine intensity decreased , but up to that point I had no idea I was having menstrual migraine .
Speaker 1What did they do to stop the menstrual cycle ?
Speaker 2They put me on a continuous birth control okay , which meant that , like I , would just take the pill every day so it would stop the cycles . It took around like three different pills to find the right one . But once we did that like when you're told that you have migraine you're going to hear over and over , you need to find your triggers , identify it . It is impossible to do . If you're going to hear over and over , you need to find your triggers , identify it . It is impossible to do . If you're at a pain level of seven every day and you go to nine , it's like what caused me to jump up by two because I was already bad . So it's like once I was able to eliminate , like , the menstrual component , then I was able to identify , like certain triggers that make my migraine worse . But for five years I had no idea . I just lived at a chronic pain of a seven and dealt with it because it was just nothing else for me to do .
Speaker 2So it's a unique situation that , like I , had other conditions that slowly started to kind of unfold as I continued to get older . I also had two major surgeries on my sinus and I think that also contributed a lot to my migraine in my early 20s because I had complete blockage in both sides of my sinus and it was creating constant infections both sides of my sinus
Genetic Nature of Migraine Revealed
Speaker 2and it was creating constant infections . I went to five doctors before one would even take me serious because they look at my chart and they see migraine and they said , oh , you're just having a migraine . It was like this major red X that no one wanted to touch me because I was a liability risk . So once I got the surgery , the first surgery , I went like one month without ever having a migraine and was like whoa , like this is life-changing Insane .
Speaker 2Like what , this is what it feels like , and eventually came back . But it's just sad that it took me 12 months of bouncing from one doctor to the next and then when I did need the surgery , my insurance wanted to prove it because I had other doctors submit that there was nothing wrong with my sinus . So luckily I had like a really great doctor that would call my insurance over and over again , redid all the scans and tests , but it took 12 months of like fighting my assurance to get the surgery because I had other providers say there was nothing wrong with me .
Speaker 1Yeah , I feel like in my experience to fighting the insurance , especially when it came to migraine , was like the worst of it all .
Speaker 2And then there's like I live in a state that doesn't require the step back , meaning like your insurance could tell you to do medications before they will cover a certain one . So , luckily , like I've never had to do . When I did turn chronic , I already lived in Washington state , so I didn't have to go through that process , but I still had a fight with prior authorizations and the denials and just to get a medication . And all the new migraine medication are over a thousand dollars . Yeah , there's one that's just 10 pills and it's over a thousand dollars and it's like that's expensive , like for some people that's majority of their paycheck for a month and they need this medication . But we have a medical system that makes it like jumping through hoops to be able to get something covered jumping through hoops for sure .
Speaker 1I think that's . I think that's one of the most frustrating parts . When it came to migraines for me , my doctors knew like , okay , botox was going to help your migraines . Like we just know that , however , insurance is going to make you go through X , y and Z literally the whole alphabet before we'll get to cover Botox . So it was like a year , maybe almost two years , of starting my journey with other medications to have them fail , just so we know that , like Botox works , but I couldn't get it until I had so many failures . And that is , I mean , that's just classic example of jumping through hoops and how broken the medical system is , especially insurance . So I feel you on that and I think that that's a very common experience for a lot of people , unfortunately .
Speaker 2I always say having a chronic illness is a full time job . If it isn't the insurance , it's fighting to get , just to get in to see your doctor , because there's just such a big shortage of medical professionals and I also think it's very hard to find a good medical professional that is empathetic and also is willing to help you , validate you . Yeah , like when you do find that doctor , it's like I have a problem but oh , they can't see you for two more months . It's like okay , like can we do this over my charge ? Or something like I need help now . So it is just a full-time job and anytime I have to call insurance .
Speaker 2I know I'm just going to be in a terrible mood for the next , but the rest of the day I'm just going to be absolutely livid that I had a new assurance with a new company I went to and I don't know what was wrong . But every time my doctors say they sent something in , I'll call them . They would say they never got it and it was just like this back and forth that I felt like they were just lying to me at that point . It's like it's been six months and you're still saying you're not getting this paperwork when I have the copies that my provider is sending to you paperwork , when I have the copies that my provider is sending to you and it's like literally debilitating head pain Like this adds more head pain .
Speaker 1Honestly , it's just a pain in our ass to have to deal with all this Going back to like medical gaslighting and like you having to go through so many doctors to take you seriously . What's like one thing that really stands out to you when it came to the medical gaslighting .
Speaker 2I was three when I first got admitted to an ER and as a child , when you go through trauma , you tend to block out things that are traumatizing to you was like all these memories just flooded my brain that I just did not remember ever . Like conversations happening , you're just seeking attention , you know definitely you're a child and like every test is coming back negative . And I was complaining like I have stomach pain , not head pain . So the first I come to doctor's mind it's anxiety , trying to get out of school , avoiding something . Bad home life . It's like all those memories of going into the ER to advocate for my mom just came back . And the worst part is my mom was so gaslighted .
Speaker 2I got in a fight with an ER doctor . He said there's nothing wrong with your mom . She's having stroke-like symptoms , but it's not a stroke , so we're just releasing her . And I just snapped because this was the second time we rushed my mom into the ER and I just like we're not releasing her . There . She can't speak , like she can't even get one word . Out's something wrong . And then the next four years was a fight because everyone kept saying it's a stroke , but it's not a stroke , until we found a provider that said no , this is just a tipillegic migraine , so there's just . There was about a 12-year gap , and yet the gaslighting was exactly the same in the ER . It's like nothing has changed , and that's really sad .
Speaker 1It's so sad and I'm like getting tear . I'm getting so emotional for this because it's like I've like empathized with that so much and like the fact that you were what ? 15 , you were young and you had to advocate not only for yourself but for your mom too , for all these doctors that aren't taking anything seriously it . It's that's a hard teenage emotional thing to deal with it was .
Speaker 2And then , like I was admitted into the hospital when I I think I was 23 , um , I flew to Chicago . I was seeing a really bad specialist in Seattle that gaslighted me a lot and told me I was advocating like I'm not doing well , like I need , I want to see a new doctor , could you refer me out ? And his response was I don't think you're chronic enough for me to give you a referral to see someone else . I called my old doctor for advice that I trusted a lot . He's like go go to Chicago . There's a headache specialist like a headache hospitalization center there . Take a bag . They may have met you . They may have not met you .
Speaker 2At that point I was having it was nine months of zero relief at a seven or higher pain every day . So I was admitted into the hospital and that was the first time that at that point I had migraine for 20 years that I ever felt , heard and understood like . The doctor was so thorough , going through all my medical history and I was experiencing a lot of symptoms . That doctor said that it is migraine symptoms , but he was the first doctor that says I think it's actually your medication that's causing some of your symptoms , like we're going to take you off these medications but but we're going to admit you win and we're going to do it very slowly . And I was on that medication since I was five , by the way , and I was 23 at that point . So like I was very like , no , don't you dare take me off this medication Anytime . I've tried getting off of it . I can't see I get really sick and he's like it's symptoms of what you're experiencing . And sure enough , he was right .
Speaker 2Like it was the first time I was ever educated that there is a difference between a neurologist and a headache specialist . A neurologist could be a headache specialist , but a headache specialist goes through extra training and goes through certification
Battling Insurance and Medical Gaslighting
Speaker 2to really treat headache disorders , goes through extra training and goes through certification to really treat headache disorders . I was also educated at that point that there are food triggers , weather patterns that could affect your migraine . No one ever took the time to ever educate me , even though I've had the disease for such a long time that you should maybe keep a journal or be more mindful of these certain types of foods that could potentially be a trigger may not be a trigger for you , but could make you sick . I was also taught on like how to use my acute treatment more effectively . So it's just like it's really sad that it took me going out of state into a hospitalization center just for migraine and to learn about my migraine disease .
Speaker 1So do we feel like it's just lack of information around or there's just not enough specialists that are in the headache world ? Why ? Because same world .
Speaker 2Why ? Because same . There's two reasons . One in med school it's only about four-hour coursework on migraine , so that's issue number one , and most people will go to their primary care doctor first and say I'm experiencing a lot of head pain or nausea . So if your primary care isn't educated on , like some red flags of oh , this may be migraine , you're never going to receive the right treatment . So that prolongs getting the correct treatment . The second piece there's only roughly between 700 and 800 addict specialists in the United States and there's a lot of people with migraine . So most people go to neurologists or get treated through their primary care . But even neurologists don't have a full textbook on how to treat migraine , so there's just a lack of education in the schooling piece that leads to poor care the ratio doesn't add up .
Speaker 1correct , correct , that's exactly it . What ?
Speaker 2are some of your triggers ? Um , so uh . I wasn't able to identify triggers until we treated my hormone issues and once we did that , like that was a bigger , a huge trigger . Um , I got off my birth control just because I kept having breakthrough periods and we wanted to try a new medication . I was debilitated , like I was trying to do two months without it . I said , give , like I took it within four weeks after and like just two days on the pill , like my migraine just simmered down , which is just insane to me . It's like I don't know what's ever going to happen , like if it's going to continue to get worse as I get older or if it's eventually going to get better . But I know my menstrual cycle is a huge trigger .
Speaker 2The other thing is MSG , but only small volumes . I could have like a bag of Cheetos , but if I go to Chick-fil-A I die . For like a week . Chick-fil-a loads it with MSG . That's a waffle prize and I had no idea that they use MSG until I was on Instagram and a reel came up and someone talks about it and at that point , like I ate Chick-fil-a . 30 minutes later I was driving home and I was like , oh no , like I , I need to pull over . I get to my house , so like I can't even walk out of my car , so my husband come gets me . And then , like days later , I'm on Instagram and someone's like do you know , chick-fil-a has so much , so much MSG . I'm like , oh , that'll do it . That explains it . Like it was 30 minutes after I ate it and that's how I know if I like I have a food trigger , it's within a 30 minute ratio of when I eat it .
Speaker 2Um , and then the weather is the other thing that really triggers my head . But ever since I did my sinus surgery I did two different parts of surgeries the weather doesn't impact me as much as it used to be . It used to feel as like if my head was going to burst into a billion pieces . Now it's just a typical migraine . I don't have that bursting feeling of my cheeks are going to explode , my head's going to burst . So those are just my three things . And then sticking to a routine if I don't get eight hours of sleep , I'm going to not be functional . I'm someone that needs at minimum eight hours , ideally nine hours , but I can't . I'm not someone that could like do an all nighter If I get out of a routine . One day . I know the next day I'm probably gonna have to be taking a nap by noon because I'm not going to make it through the full day .
Speaker 1So you're allergic to homophobic chicken , you can predict the weather and you need a lot of sleep . Basically , oh my gosh , For somebody that has never experienced like a lot of head pain , a lot of headaches , migraines how would you explain that to someone ?
Speaker 2I always start off saying like it's different for everyone , so like for me , what happens ? Imagine you're kind of in the Alice Wonderland , like you're there , but everything's like moving past you , kind of slow pace or fast pace , um , and it feels like someone grabbed a hammer and just started hitting you on the side of the head . Uh , words become like if you're really drunk and you're having a hard time putting words together , that's what it feels like . Or it's just like difficulty comprehending , um , and then there's just a level of fatigue , as if you did an all-nighter and you had a whole bunch of fun , but like you're just drained the next day to where you need sleep . That's what it feels like a walking zombie of , like I'm here , but I'm not really here , um , but it does look different for everyone . Everyone's symptoms are very different . Just for me , it just feels like a hammer hitting my head and that I see the world moving by , but I'm just not present .
Speaker 1I'm not there . You said that beautifully and for me it's like there's a big inflated balloon in my head and there's like zaps and yeah , everything is different for everyone , but I think the hammer to the head seals the deal .
Speaker 2It also used to feel like I used to use the balloon analogy as well , and it felt like someone kept pumping up the balloon and it's like at that very thin spot before I just burst . That's how it would feel in my cheeks really bad in my cheeks , to the point like it was more painful in my cheeks than my head , but it was like my whole body , my whole face and head felt that way . I'm like it's going to burst . I just don't know when it's going to burst .
Speaker 1Racing against the clock here . Do you have tmj symptoms ? No , I do not . Okay , I mean , that's nice , at least so you don't have my things coming from the tmj no , I I do experience neck pain .
Speaker 2Um , it used to be like severe neck pain back . If I'm having a really bad attack , my neck pain just spikes it . When I was in that chronic state of a seven . I'm now , like today , at a four and I'm using a pain skill of 10 . I don't have neck pain , but if I go to a seven I will end up with neck pain and that just makes the migraine worse .
Speaker 2But I know the neck pain . I think it's like when I sleep at night because I'm in pain , I'm like hunching my shoulders or something , and I think that's what causes the neck pain , because I wake up with it . But I also , like used to tell the doctors like I'm sleeping , but I'm not sleeping , like I don't know how to describe it , but it's like I slept 10 hours . I feel like I slept for 30 seconds and I have no energy and my body is so much pain that like I don't want to move . Um , so it's just . Migraine is a weird disease that like it just comes with so many things that could also like the hardest part is like migraine symptoms are the same symptoms of medications , so it's like which ?
Speaker 2one is it what's what , and that's why I got so mad at my doctor when he told me oh , we're taking you off this . I think your blurred vision is coming from your medication . I was like I've been on that for almost 20 years and you want to take me off this . I don't know how I feel about that , but he was right . I didn't have blurred vision , which is a symptom of migraine . I just had side effects from the medication .
Speaker 1I could imagine there was probably a lot of anxiety when it came to coming off a medication , especially since have history of like withdrawal symptoms with other medications yeah , I have a lot of anxiety around medication .
Speaker 2So , like , if we get back to like , the journey of like , when I started to get better , um , then a new medication just came out and I have tried every new medication for migraine that has hit the market and I will always try new medications , but I break out in hives or I end up vomiting from medications or I just get some weird side effects that aren't even listed on the side effects list . I went through 40 medications and I tried the newest one and I'm telling my doctor I'm like I'm experiencing vertigo . I have never had vertigo in my entire life . I'm either getting vestibular migraine or it's a side effect from this medication . He's like you just need to try it for three months , just give it a chance . And at that point in time I just felt like my body was telling me can't take anymore , like it just was a very clear sign that I'm out of gas with this disease and it's like it's affecting my body in so many different ways that I just stopped medication . I actually stopped all my preventative treatment and I actually started to get better .
Speaker 2Ironically , and so wild , I think , at the same time I just had my second surgery on my sinus . Um , I was around six months on birth control , so my hormones were hormones completely became flatline . I think just those two things combined just helped me get back to some level of being functional and my symptoms that I would have . I was always nauseous and I was like it's a migraine symptom , so it can't be medication . I would get these dizzy spells and I would be more fatigued than I am today . I'm a naturally high fatigue person , but I was like mentally just drained every day and as I became like started withdrawing off medications , I just became better and that's actually how my pain went from a seven to a four is that I got off my medications . So now , whenever the doctor's like , oh , let's try something new , I'm like terrified and like I could probably achieve a pain level of zero .
Speaker 2There's a certain medication that works very well it's only for acute , though , and my insurance was willing to give me 15 instead of 10 . And like my doctor's idea was like take it every other day , but it triggers other illnesses . I also have irritable bowel syndrome , so or IBS , so like taking that triggers another disease and then I'm sick with the other disease . So I'm like I am content at where I'm at that . I am functional at a four and , yes , there's probably like four or five days that I hit a high note and it may just linger for multiple days , but I'm not as bad as I was and I just don't think I'm reactive . I'm very reactive to medications
Treatment Failures and Lifestyle Adaptations
Speaker 2and reactive in the bad way of I just don't do well with them , and it's that way even with antibiotics . Whenever I need antibiotics , the doctors will say , oh my God , like you're allergic to everything and like I know , so like there's only two antibiotics I could take without giving me hives . So like I have anxiety even around antibiotics , because my body just doesn't react well .
Speaker 1So you're managing your migraines currently without any medication or treatment .
Speaker 2Yeah . I do feel , though , my birth control should be considered a preventative treatment , because I know , the moment I get off of it , I'm in a really bad space , and I'm probably taking acute medications two to three times a week , which is probably more than it should be .
Speaker 1What are your acute medications If you don't , if you're not ?
Speaker 2Yeah , I have one painkiller that I take it is Catafam is the generic name of it that I take it is catfam is the generic name of it and then I take you roughly only if I'm just like in a really bad space . You probably will cause an IBS attack for me . So , like I have to weigh my odds of like which . Which illness do I want to flare up ? Because you probably could get me to a pain zero , a pain level of zero , and it's very effective for me , but it does not settle well with my gut have you tried nertec ?
Speaker 2yes , I've tried all the cgrp medications and they were either not effective or they were effective and just stopped being effective for me . Um , yeah , I've tried the nasal sprays as well , and all the tripans , all the , the whole list yes , I've tried them all .
Speaker 2Like triptans were really never effective for me me either . So , like I , I think I've only tried like two or three of them , and I don't know how many there are . I think there's five . But I kind of just said let's like move past that . Uh , I used to do a lot of injections . Um , there's a drug called DHE I don't know how to say the medic medical term but when I was in pain level of seven or higher , like I would take that probably twice a week through . Um , but also I used to do a lot of Benadryl injections because that would help me as well . But now that I'm like at a more stable rate , like I've been able to get off kind of what I consider like the harder duty medications that it did affect my body quite heavily , those types of meds and doing injections . So I try to manage really heavily through lifestyle changes . That's been very effective for me ?
Speaker 1What kind of lifestyle changes have you done , so when I got to a really bad spot .
Speaker 2I just started my career , I was working in office and then the pandemic hit . And like the pandemic was kind of that saving grace for me because I started working from home . And then I was like , oh , wow , like this is back before . I was like I was still in all these preventatives and still really struggling . But I noticed that I got better by working through home . So my company I was at forced everyone to go back right away . So then I switched companies and then I just kind of continued to do that anytime I forced back into an office and I tried to make it work because I was like , oh , maybe I should try .
Speaker 2I'm at a better state now to see how it works . And it's like instantly not being able to control my environment is just a really big trigger for me . And once I and I have intractable migraine . So that's when you get a migraine and it lasts more than 72 hours and it's usually resistant to medication . So like I have to not get to that spot of a really bad attack because it doesn't stop for me within a couple hours , it lingers for days . The other things are like I've done the surgeries on my nose and my sinus has been super helpful . And then just having a routine . I am a very routine person that I have to go to bed at the same time and wake up at the same time . Even if I go to bed later , I will still wake up at the same time because Even if I go to bed later , I will still wake up at the same time , because that's what works well for me the biological clock .
Speaker 1So I mean Botox isn't a lifestyle change . I mean maybe for some people it is , but you never tried Botox .
Speaker 2I did . Oh , you did . Yes , I tried Botox . I tried almost every common treatment and Botox is what ended me into the hospital for 14 days . Wow , the first round I felt like it was pretty effective . I felt better .
Speaker 2Second round , I started telling my doctors I'm getting this neck pain , like I can't move my neck and I just don't feel good . When I went in for my third round , I was probably at a pain level of eight and I was like my medications I'm taking daily is not working . I don't think Botox is helping me . He gaslighted me and said we're going to do Botox again , took me off of medication I had severe side effects . So within 48 hours he put me back on to the old medication I was on . So my body just went through like an insane withdrawal and then I just scared it off , basically Ended up in the hospital for 14 days to try to break my migraine cycle , because it was just at that point .
Speaker 2It was so severe I couldn't even stand . My legs turned completely . Jello , the room was spinning . Um , I would start hallucinating because the pain was so severe . And after that I was like I'm not doing Botox again , like it just basically stopped me from like having any movement in my neck . It didn't really feel any like pain in my face , it was just like my neck just turned completely stiff and that is a symptom of botox and in my medical chart I said this in every appointment . He never wrote down that I had neck stiffness . When he asked me and I was like interesting there . So my husband too , and he's like after the third time he's like I think you need to go find a new doctor , like this guy does not seem to like have your your interest in his best interest here how do you manage your , your lifestyle now ?
Speaker 1When you are in a flare , what do you do to kind of calm that ?
Speaker 2I'm from home , so I have a lot of flexibility during my day and I usually work in the dark and I have a bed right next to my desk , so if I need to just stumble my way through I do that . I've also just become more self-aware of like something's off , like there's a mind shift that needs to happen , of like there's this fear that oh my God , I only have five pills left for the month . I don't want to take them , so then you delay taking them and then you get really sick and then it's too late because you missed that target . So I got over that Like I will take them when I need them and when I feel off . And the other thing is like my husband's probably significantly better at identifying something's wrong with you than I am , and I don't know if it's like something happens to my face .
Speaker 2I always , as a kid , I always would be told why is your ? Why do you have such black circles under your eyes ? I remember going to the grocery store and someone pulling my mom aside and saying your daughter , eyes are too black , you need to try putting cucumbers on her eyes . So like I give really dark circles and like maybe I kind of look like a ghost or something , I don't know . But he will tell me he's like you need to go lay down or drink some water or you don't seem okay . Are you okay ? You do check-ins with me , which has really helped .
Speaker 2But it's getting over that mindset hump of like if I don't feel 100% , I'm just going to take it , and if I don't need it , okay , but if I do need it , great , and I caught it ahead of time . Hopefully it won't escalate . So it's just getting over the fear of running out and being just more proactive , of I'm going to stop this the best way I know how , and that's maybe recharging or just taking my medications with recharging and see how it goes girl , I feel that so hard .
Speaker 1I'm like rationing out my ubral v like so carefully and it's like , is it bad enough that I need it ? But normally , yes , it is .
Speaker 2I didn't say , if you're , that's when you need to take it .
Speaker 1Good answer .
Speaker 2Yeah , like what helped me a lot is what . So after I got released from the hospital , I was around 23 . And I was in a really bad headspace . I became very depressed . Part of that was because I was on an antidepressant for 12 years and they took me off that and that meant like my entire childhood I didn't really feel emotions very much . And then I get released and like I would just start crying Like I was just in one . I was having really bad PTSD from the hospitalization .
Speaker 2I would wake up in the middle of the night drenched in sweat , thinking that I'm getting Benadryl through an IV and anyone that's had Benadryl through an IV knows that it's just so painful and it felt like an elephant sitting on your chest , acid burning through your veins and I would just wake up like hyperventilating and I was not in an okay spot . I just wanted everything to end . So I started doing research . I'm like what could I do to find support ? And that's when I found support groups for people with migraine and it was life-changing my first support group . I don't think I even said a single word and I just sat there and listened . I felt so validated and so understood and also just empowered that like , yeah , I've gone through really hard stuff harder stuff than most people ever go through in a lifetime and I'm still here . Stuff than most people ever go through in a lifetime and I'm still here . But like it gave me the perspective of a glass half full versus half empty and that was the beginning of a mind shift change for me , which I say that's also been a big lifestyle change for me .
Speaker 2I stopped giving control to my migraine on my mental health . That like , yes , I have bad days , yes , it sucks and my life is 100% different than what I ever expected it to be , but it's also really great . I've also met such incredible people through my disease and I do feel that some of my best qualities comes from having migraine . So it's like that level of acceptance and that I could do this pain from being surrounded by other people that have also gone through something similar . Everyone's journey is different , but everyone has gone through the same gaslighting or medical challenges with insurance or doctors like that is you . That is very common for everyone .
Speaker 2So I just felt like I changed my mindset of like I could do this , like I've gone through hard stuff I don't know how hard , how much harder it's going to get , but I will figure out how to get through it because I always have . So just finding that community also changed my life , because I don't know if I would I didn't think I would live another year like it was that bad of a space mentally and just also physically with my migraine , and then I did . And another year like it was that bad of a space mentally and just also physically with my migraine , and then I did . And I have continued to do that each year . So I do think finding your community , your people that you meet with like on a regular basis , is just so important .
Speaker 1I have chills like that's again . You said it keeping the mind at the positive mindset is really such a huge game changer and it makes such a difference . You are grieving who you were before you completely lost . I mean you started from a very young age . I mean your story might be a little different , but you're grieving the life that you think that you were going to have , or the life that you had . And I think the grief isn't talked about . Well , it is talked about , but it needs to be talked about more , because there's so much grief with chronic illness and luckily there's a lot of us now that are really sharing our stories and our voices and having those conversations . What do you do to manage your grief ?
Speaker 2I think it begins with just acknowledgement that grief is linear and one day I may be going through five stages of grief all at once . Then the next day I may be at acceptance . It's being kind to yourself that it's okay to have a bad day . It's okay not to be okay . It's okay to rest when the rest of the world tells you you need to be productive . It's , honestly , just stop caring what other people think . And that's a very hard thing to do , especially if you're a people pleaser or care a lot about what other people think .
Speaker 2It is hard to turn off that part of your brain of I'm doing what Dina needs today and if the rest of the world doesn't agree , who cares ? Like I need to prioritize myself and I struggle a lot with pacing because I every day I'll make a
Finding Community and Support Groups
Speaker 2list in my head of things I need to do and I've caught myself lately like doing the balance act okay . Like if I go do this , I already feel that I'm not very good . I will be out for the next two days . So like I've started to do the pros and cons and became better at pacing myself , but that took a long journey to get there . Like I'm now in my late 20s , like my full 20s , like I barely ever would that like do this or don't do this because it's going to cause an attack . So just being kind to yourself and understanding that your life does look different and grief is okay , like it's okay to grieve what you have lost or what you've hoped for . But the moment you let the grief control you , I feel like that's when your migraine just gets control over you and at least that's like how it happened for me . It's like my grief was suffocating me and I felt like I felt like I was going to lose my career . Like I just met my husband at that time and I told him like you , you could leave , like you did not sign up for this , like I think , like two weeks after we met , he was taking me to my first Botox appointment . Like that's like how much like in he went and it's hard to .
Speaker 2There's so many different sides of grief . There's the grief of wanting to protect your loved ones and not wanting them to see how much you're in pain . So you put on this smile and you pretend like the world is okay , when you're just suffering in silence because you don't want anyone else to feel what you're going through . And then there's the internal battle of brushing your teeth is just getting harder and harder every day , like .
Speaker 2Like that mental mindset is really hard and that's where I think support groups just come in handy . Like , I joined a lot of Facebook groups and I just found those not effective . I found getting in a room of a very small group of people and just talking like what we're talking about right now , and hearing how other people handle what they're going through and learning from other people , it was just so empowering and it's still very empowering to me . I lead three support groups now , four support groups now , and I absolutely love it . Like , even though I'm leading them , I'm learning just as much in every support group as everyone else that's attending and I've learned more about my disease from my support groups than I did from any doctor .
Speaker 1You have such a powerful voice . You create content which , by the way it is laid out , so nice and I've learned so much about migraine as well , even though I lived through it and it's very educational and informative and , like I said , very powerful voice . You cover so many different areas and layers of migraine . What inspired you to start sharing your journey online ?
Speaker 2It was the moment I got in a room full of people with migraine support group when I started my career . Someone told me . One of my mentors told me don't ever come to me with a problem without a solution . I don't care if it's the shittiest solution , you come to me with a solution . And I view that way .
Speaker 2With chronic illness , we could all complain how awful it is , how terrible insurance is , but if we're not doing something to change that , then we're kind of also part of the problem , right Like we're suffering in silence versus being loud . So I started advocacy Like the moment after I joined the support group . I learned about all these different nonprofits that I drowned myself in the work because that's what I needed to survive living with migraine . I needed a purpose . I did not get a choice on what cards I was dealt , but I do get to choose how I play the game and I choose to continue to raise awareness . So I have gone to DC the past three years and advocated on the Hill for policy changes .
Speaker 2I started sharing my story publicly and if my story just impacts one person , I view that as a win . I am not going to change the medical field there's a lot that has to happen . But I'm one additional voice that is raising the same concerns that everyone else is , and I do think there's power in telling your story . I feel like I achieve acceptance by telling my story , and it was very hard for me to watch my brother outgrow the disease and then watch my parents have this false hope that I too would outgrow this disease and it just kept getting worse , like each year , like it was not getting better . So once I achieve acceptance , I feel like I also helped the people around me also see that like this is it . Like I'm not probably ever going to be migraine free . If I achieve episodic Like it will be a miracle . But today that's not it . So I am going to share my story and I'm going to raise awareness . That's not it .
Speaker 2So I am going to share my story and I'm going to raise awareness , because it's also the story of my grandmother , who could not speak english to explain that her head would hurt . It's a story of my mother who , at the age of 50 , became completely debilitated and then I had to watch bits and pieces of her just deteriorate . So like to me it's let's share our stories , because together we're stronger and more powerful . But in order to share your story , you'll have to also be ready to tell your story , because for many people it is not uh , it's very emotional and it's not something you talk about without crying or without feeling all these different levels of emotion .
Speaker 2But advocacy and sharing my story has also been part of my treatment plan and there was a doctor that told me you need to make advocacy part of your treatment plan because it gives you a purpose and I feel very strongly about that . That I tell people in my support group . You need to make advocacy part of your journey and I got an email yesterday from someone saying , like how do I get involved with that ? Because see where I can like . That's a good feeling of like this person , when they first joined , was in a bad spot and now now they're ready to share their story , they're ready to go on a big forum . Maybe the big forum is just wearing a migraine t-shirt , like it doesn't have to be something like going to dc .
Speaker 1It's just starting to feel accepted enough to wear sunglasses inside a building or wear a shirt that has migraine or whatever disease you have yeah , you're speaking up for people that couldn't , especially when it came to like your grandmother and your mom , and I feel like that probably gives you a big sense of purpose . Obviously , a lot of other purpose when it came to like your grandmother and your mom and I feel like that probably gives you a big sense of purpose . Obviously , a lot of other purpose when it comes to a lot of other things too , but along with the sunglasses thing , I , yeah , wearing sunglasses indoors was like really awkward and weird for me at first , and now , like I have to go to like concerts and light shows and I have to put my shades on and I have to wear the caps to like the medical centers and stuff like that , and it's just like finding your little little things that work for you . What is the biggest thing you've learned as an advocate ?
Speaker 2It depends who I'm talking to . If I'm talking to someone that has no idea what migraine is , is to assume good intent . And there are two types of people in this world that those are the ones that don't know and don't care . And then there's the ones that don't know but do care . For the ones that don't know and don't care , don't waste your breath on them . Smile and walk away Like you're going to . You're going to try to advocate and educate , and they're still going to believe that Botox is just an excuse to get it covered by insurance . Yep . So , like you know , there's going to be people you can't change their mind , don't ? Your energy is limited , so don't waste your time with someone that's not going to want to change . The second piece is for the ones that do care but just don't know better . Like that's your chance to speak up . So if someone says , well , have you tried yoga ? Like you could respond saying you know , thank you for the suggestion , but yoga doesn't actually cure migraine . It may just like help me relax during a high pain , or like you could have something formatted , but like that's your chance to educate someone . So always know what that person's intent is . And if you do not know that person's intent , you make the judgment call Is it worth your energy or be quiet ?
Speaker 2The other piece is be proud of your story . Don't compare your story to someone else's . My mom and I genetically related to different types of migraine , to different types of treatment , to completely different symptoms . What my mom goes through is my mom's journey and what I go through is my journey . Just because she's in a different place does not mean that I am failing or that I am behind . I am on my own journey . So don't get caught in the loop of constantly comparing yourself to other people . When you hear their stories online that oh , dina achieved a pain level four by treating poor hormones . That's not everyone's journey . That is just unique to me on how my life played out . So be proud of your story and don't compare it to anyone else's . Your story is worth just as much as my story , but it's unique to you and mine's unique to me .
Speaker 1This might kind of go along with what you've learned as an advocate , but with somebody that's really struggling in their journey right now , what advice would you give them ?
Speaker 2The most important advice is join a community . Find your people . You're going to go stir crazy on Googling and going on Reddit threads and maybe Facebook groups and you're going to feel overwhelmed or frustrated . Join a support group or join a community . Join a support group or join a community . I can't explain how powerful it is to get into a room of people that you don't even need to explain how you're feeling . They just know and they just do the head , not like it's okay , dina , like stay off camera .
Speaker 2Um , you will learn more from your community than you will from googling or asking your doctor , because they have been in the exact same situation that you have been in and every person that I have gone like I have been attending for a support group and I've been a leader . There's no one that has joined a support group and said like it was the worst experience . Most people will say it is the best experience they've ever had and it gave them the tools to add it to their toolkit and eventually they do find a treatment that worked and they maybe stop showing up so frequently to support groups , but they know they could always come back . A support group is just so powerful to be able to be validated and also empowered to keep going , because living with a chronic illness it doesn't matter what chronic illness you have it is hard , it is very difficult , especially if it's invisible . So to be able to be in a room where you could just be honest and say you know , today really sucked and I don't want to be positive . Like this is what's going on right now in my life and I don't know what to do with . Like this is what's going on right now in my life and I don't know what to do with my medical team . Someone in my support group told me Dina , you need to go find a new doctor . You have a really bad doctor . Get out Like if no one told me that
Creating Hope and The Migraine Network
Speaker 2I probably would have stayed because I was drinking the Kool-Aid . So there's just a power of like being surrounded by people that are honest and going to tell you we've been in your shoes , dina , it's not going to work out like you could continue being positive with this doctor , but there's too many red flags to stay .
Speaker 2The second thing is just be kind to yourself , like allow yourself to grief , allow yourself to feel whatever you're feeling , just don't let yourself drown in it , and that's where support groups come in handy of being surrounded by other people that could pull you out . Because even though my parents , even though my mom has migraine and my dad has had a migraine attack in the past , so he knows what it feels like , it's just not the same level of under like , maybe it's like the stigma , like when your parents tell you to do something versus your friends , but it's completely different when you're in a room of people you don't know , but then they become your long life friends and you may have never met them in person , but you know all about them and you know about their lives and it's just a different . You get to escape your reality for a few minutes and get into a different reality of people that just know what you're going through .
Speaker 1You get validated and understood and you can have the best support group outside of chronic illness , people that don't experience it friends , family but getting into a group of people that experience the same things as you , gone through the same things as you been gaslit the same way as you , it definitely hits different and it is very important . In the same things as you been gaslit the same way as you , it definitely hits different and it is very important . In the name of support groups , the Migrant Network , let's talk about it .
Speaker 2So I started the Migrant Network in January of this year . It's been an idea I've had for years but never had the nudge to just do it . Years but never like had the nudge to just do it . I also completed two years of being a support group leader through Miles for Migraine , and Miles for Migraine was my saving grace . I found it . I found them when I was in that dark , scary place and they pulled me out and they taught me how to advocate . They connected me . It was such a great community . But by leading a support group , I just I observe that there's still a need , a lot of need for education and just more support groups . Yeah , so I I'm going through certification right now to become a well , a chronic illness wellness coach , along with leading additional support groups through the Migraine Network and also through Miles for Migraine . But the Migraine Network purpose is really to offer support , validation and truly just a community for people with migraine and even other chronic illnesses .
Speaker 1Keep up the good work . And you're so educated and you have so much knowledge . I mean you have . How old are you ?
Speaker 229 at the end of this year , so I'm 20 28 26 years of experience of this .
Speaker 2It's been a long journey and it's kind of wild how much it has changed and like how other chronic illnesses also just slowly started to come into play . Like each year , it's like , oh no , like what box am I opening today ? What's the meaning to my life ? Uh , like last year's diagnosis celiac disease and what's next ? It's like what's coming ? It's a good journey . It's also been a really hard journey but at the same time I'm a firm believer I wouldn't trade it for anything . Like I am who I am today because of the hell I had to walk through from a child , literally from three years old , saying my tummy hurts and hearing doctors say you are just seeking attention or blaming my parents for a bad home life . So getting in my 20s and then fighting the same battle I fought when I was three years old all over again . But there's been a lot of life lessons and I do feel like I've been able to create a life that I am proud of , even though it is very different than what maybe 15-year-old Dina thought her life would be .
Speaker 1What gives you hope and joy right now and for the future ? What gives you hope ?
Speaker 2The biggest thing is that there's so much noise right now around migraine , and in the 90s there was probably some noise , but not to the capacity it is today . Probably some noise , but not to the capacity it is today . Social media has been able to really put it on a megaphone of we're here , we matter too . Migraine is significantly underfunded in the US based off its economic impact to the economy , so it gives me a lot of hope on how much noise there is around the disease . And the second piece is like there's a lot of new medications . 2018 was the first time in migraine preventative treatment hit the market and there's continuing to be more treatment being released and in trials right now that I advocate for the future .
Speaker 2Dina , I confident if I have children , they're going to have migraine Like it is three generations in now , but I have more knowledge this time and I want to create a better future for the next generation , and it doesn't just have to be my kids , it's literally anyone that's diagnosed with migraine .
Speaker 2Like I don't want them to feel how I felt , whether that was as a child , that I was labeled as a sick kid or the weird kid in school because I would miss so many days of school , parents would tell my mom your kids are contagious . It's like no like . At that time we thought we had epilepsy , but like , epilepsy is not contagious , like it's . I don't want anyone to feel the way that I felt and even though I had a very incredible family , I still hear the things that I was told as a child , whether that was from classmates or doctors . I just want to create a better tomorrow and I have hope that , with all the loud noise that's happening whether that's through social media or in DC , with advocacy groups going and really pushing for change that eventually there will be more change .
Speaker 1But I'm excited that there's more treatments in the trial phase that maybe hopefully , you know one of them will be my saving grace or at least saving grace for many other people it is absolutely batshit crazy to me that so many of us have experienced the same thing , like I had really truly no idea that there was this many of us , which is like it's not a good thing , but the community of it is nice and I can assume that it's also doing a lot of healing within yourself , within talking about this , especially younger you . You're showing up for her and getting loud for her , and that's really beautiful and powerful .
Speaker 2It is . I saw this quote the other day that , like the younger version of you would be prouder for all the things you've gone through . And even if you don't feel that now , she is proud of you . And I feel very like , I felt very connected to that saying because it's like it's true , I have gone through hell , like I went through hell before I turned like 21 . And then it just continued to get worse . And it's like I have survived 100% of my hardest days and I will continue to do it .
Speaker 2And I think it's really hard when I hear sad stories of like people that couldn't make it through because of the medical system or not finding treatment . I was told last week that one of my migraine community people committed suicide and that shattered my heart . I remember this person in the first support group I ever attended and I was just like wow , that is so sad . So that is why I speak up , because there's so many more people like that that have not found maybe they do have acceptance , but they are still in such severe pain that they never got to where I'm at , of being able to still be functional . They're functioning at the highest point of pain and it's just no relief ever to them . So that is why I do what I do , as I want to be a voice for all the people that lost their voice , and hopefully someone will hear the story and I will . They will go into migrant research or chronic pain research and , you know , be the change that the medical field needs .
Speaker 1If you can save one life , that enough like speaking out , getting the voices out , hopefully helping other people , which you are clearly , um , but I won't keep you any longer . Thank you for being here . Where can we find you ?
Speaker 2yes , uh . So I'm on on Facebook threads and Instagram under the Migraine Network and if you're looking for migraine support groups , you could check out the migraine networkcom . Currently , right now , we only offer two support groups , but this summer we're going to be expanding , so please join . Even if you don't think the times work , at least get on the list where you could be notified when more times come up that work better with your schedule .
Speaker 1And I will say , for people who are listening , your content I said it before it is seriously laid out , so nice and I've learned so much as well . And even the pain scale post that you posted the other day that really broke it down when the pain scale is so different for a normal person , for a chronically ill person , and it's just little things like that that really make me feel seen , validated , and so many other people , and it's very educational .
Speaker 2So thank you so much for having me . It was a pleasure talking to you and also thank you for your advocacy work you're doing , too , on bringing people into the podcast . It's important to share people's story and you're doing a great job .
Speaker 1Thanks , dina . All right , we'll stay connected . Yes , thank you so much .
Speaker 2Have a good rest of your day , you too . Thank you Bye .