Worst Things To Say To A Migrainiac… EVER.

Woman and Woman Speech Bubbles

10. Did you take your meds?

Whenever I tell someone that I have a migraine 9 times out of 10 their first reaction is to ask if I took anything. To be honest, I have even caught myself asking someone the same thing when they told me they have a headache. The problem, though, is that headaches and migraines are different. Maybe its just an automatic reaction and people don’t know what else to say or how to respond. But as someone who suffers from chronic migraines I can attest that the second I feel a migraine coming on the first thing I do is reach for the drugs. So asking me if I took my meds is kind of like asking if the sky is blue. It’s insulting and annoying AF.

9. Drink Water. You’re Just Dehydrated.

I admit that water does have great health benefits and I’m a believer that its always important to stay hydrated whether you are a migraineur or not. Dehydration is definitely a trigger for some people, but once a migraine strikes chugging massive amounts of water isn’t going to make it magically disappear.  Trust me, if it could I’d most definitely be using that method instead of pumping my body with medication. If water could cure migraines I️ think doctors would have stopped searching for a cure decades ago.

8. You Need To Exercise More.

   All migraineurs are not created equally. Everyone has different triggers and symptoms, however, there are definitely things most migraine sufferers can agree on. For me, if exercise had a Facebook account our relationship would be listed as ‘Complicated’. I love to stay active for not only my body but for my mental health and I truly believe that when I am consistently working I feel better overall. However, my workouts are severely limited because anything that remotely resembles high-intensity tends to trigger a nuclear war in my head and sends me into a days-long head-pounding bender. I mainly stick to workouts like pilates, yoga, barre classes and long walks in the park but some days even that is too much for me. When I am going through a tough period, most days I’m happy to get out of bed let alone keep up my low-intensity workout schedule. Once I get thrown off my routine, it can take me weeks or even months for me to get back into it. It’s a complete catch-22 that I am constantly trying to balance. So next time you think exercise and meditation can fix any situation, think twice before you nama-say the wrong thing. 

7. Don’t stress over it. You’re just making it worse.

Of course stress is a good breeding ground for migraines but telling me not to stress over something just makes me more stressed out and angry and therefore negates the whole purpose of your sentiment. It’s like when you tell someone to calm down. It just gets them more angry. So don’t do it. Because now you’re the one making it worse.

6. C’mon. You can push through it.

Most migraineurs end up learning how to push through their pain and sugarcoat their chronic struggles to make others more comfortable. They learn to live with pain everyday because they have no other choice. They are forced to deal with discomfort on a scale that no one should have to learn how to function with. So when a migraineur gets to the point where they speak up and can’t take it anymore, what they need is someone to be understanding and to tell them it’s okay.

5. Have you tried this…?

The answer is probably always most definitely yes. As someone who has been suffering from this disease for over 16 years now, I can confidently say I have tried almost everything out there or looked into every option and if there is some new treatment or medication waiting on FDA approval I probably know about it and am waiting with baited breath for it to get approved so that I can try it.

4. It’s just a headache. It can’t hurt that bad.

No actually. It’s not just a headache. And it’s thinking like this that gives people like me a reason to not want to talk to anyone about my condition. This is why I think it’s not worth explaining to people what I deal with, because of the stigma that comes with the word migraine.

3. Are you feeling better yet?

A migraine can last anywhere from 3 hours up to 4 days or even longer. I want to be able to attend plans with my friends and spend time with my family as much as they want me there but the added pressure to feel better makes me feel worse than I already do that I am missing out.

2. You don’t look sick.

Migraine is an invisible disease. It’s one of the reasons it has such a bad stigma associated with it. So while I do enjoy a good compliment every now and then, just because I may look well on the outside doesn’t mean that I don’t feel like a team of masons are laying bricks on top of my head one by one until my eyes will inevitably pop out of their sockets.

1. It’s all in your head.

I really, really wish this were true. Unlike those who use “I have a migraine” as just an excuse when they call out sick from work, keeping the stigma alive, when I do it its the real deal. I’m not playing hooky. I’d actually rather be at work. Instead I’m laying in my bed in silence… with the blinds drawn, lights out, cold compress on my head, hoping for a miracle and wishing it really was all in my head.

 

10 Ways You Can Tell You’re A Chronic Migrainiac

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10. You Give Zero Fucks

Before I ever experienced my first migraine I had a lot of different priorities. I worried about the same things many other 12-year-old girls cared about. Will the cool girls invite me into their clique? Does my crush think I’m cute? Can I talk my mom into buying me the newest Juicy Couture sweatsuit? What are the Spice Girls doing right now? Will my chest always be flat? While my love for the Spice Girls has not wavered — I am currently coveting the Victoria Beckham collection and am seriously concerned for the well-being of Mel B. — I can guarantee you post-migraine condition my priorities have shifted in a major way. I no longer care what people think of me. I try to take advantage of the few good days I get by living my best life the only way I know how and the only person that can define what that is, is me.

9. You Wear Sunglasses Indoors & You Are Not Anna Wintour

Anna Wintour is a badass. She  rocks sunglasses whether she is inside or outside and she rocks them like the boss lady she is. Some people may find it offensive when they see regular people wearing sunglasses indoors. They assume anyone who’s wearing them must think they are just too cool. Some people might be right. But light sensitivity is one of the most common side effects of migraine. When I’m having a migraine attack, the smallest sliver of light can feel like I’m camped out on the sun. A dark room may even feel too bright. The brightness levels on my phone and iPad screens are always set on the lowest possible setting and that’s not even enough to lessen the feeling that a tiny person is taking an ice pick and chipping away at my eyeball when I look at it. So next time you see someone wearing their sunglasses indoors, they may not just be making a fashion statement.

8. The Font On Your Phone Is The Same Size As Your Great-Grandmother’s

I can’t tell you how many times I’ve been asked about the font on my phone. I have 20/20 vision and yet the type-face on my screen makes it look like I am legally blind. I set up my phone this way on purpose. To avoid eye strain, and for the nosy people on the subway who would have trouble reading my texts over my shoulder otherwise… you’re welcome.

7. You Are A Walking WebMD

It was a while after I started getting migraines before I was officially diagnosed with chronic migraine disorder. When I first started experiencing excruciating head pain I wasn’t sure what was going on and I visited a number of different doctors and had lots of tests and scans done. It was scary. There was a lot of trial and error as I was prescribed different medications, and doctors used lots of terms I didn’t understand. I quickly learned the importance of research. Now before I take any medication I look it up and research the side effects, I read reviews and I make sure I know what I’m putting in my body. Before I see a doctor I look them up, I read reviews and I make sure I know who I’m entrusting with my care. When a doctor mentions a possible diagnosis I look it up, I familiarize myself with it and I learn what it means. I get second, sometimes third opinions. I receive newsletters from foundations and organizations that keep me up to date on the latest news and discoveries in migraine research so that I’m informed and can ask about certain treatments and findings with my doctors. No one is going to care more about your health and wellness other than you so it’s important to be proactive and stay informed when it comes to your health care.

6. Your Primary Physician Is Your Neurologist

I literally put down my neurologist as my primary care doctor when I fill out forms. What, like that’s weird?

5. You Have A Small Inner Circle

When your schedule is filled with more doctor appointments than social outings, you learn quickly who your friends are. When I was in high school I missed a lot of days because of my migraines and my once always-smiling, hyper self was replaced by a moodier, quieter, resting bitch face. I couldn’t wait to escape those halls and I almost didn’t because of the amount of days I had to miss. I had to bail on a lot of plans, but that’s okay because it taught me who my real friends were. I still have to cancel plans occasionally but because of the group I have surrounded myself with the only sense of guilt I ever feel is mainly my own. I know I’m not easy to be around or deal with when I am having an attack (or even on the days leading up to one or afterwards), but that is something I am constantly striving to improve upon. I’ve been through a lot more in my short lifetime than anyone should have to deal with and because of that sometimes I’m more reserved and slow to open up to new people, because those who don’t understand can be judgmental and honestly I don’t have time for that.

4. You Fake It Til You Make It

When your months are filled with more pain days than good days, you learn to cope and power through. I think I’m pretty good at faking it. Sometimes too good. After you realize how much you hurt the people around you when you can’t say the right thing, or when its time to adult and you can’t miss a day of work, you learn to compartmentalize and put on the act that you are well. The fact that this disease is an invisible one can sometimes lead to the stigma that you actually are faking the illness and not the fact that you are well. But make no mistake, its the wellness that’s being faked. The second that I’m able to I’m collapsing onto my bed, and shutting out the world until the next time I need to come out of my shell.

3. You Are A Professional Napper

If there was an Olympic sport in napping I would probably take home the gold. I have always struggled with some form of insomnia and I also have restless leg syndrome so it always takes me a really long time to fall asleep. Once when I was spending the weekend with friends, I got the nickname ‘Flounder’ because of the way I was flopping around in the bed unable to get comfortable. Lately, 5-10 mg of melatonin has been helping me before bed. Most of the time though, I am still exhausted when I wake up and I never feel fully rested. All of my medications list “fatigue” as a side effect. Napping is a great way to fight fatigue. In my opinion,  a nap is always a good idea.

2. You Run a Portable Pharmacy

I have learned the hard way to never be caught without medication on hand. In order to out-smart myself, I have strategically placed triptans and acetaminophen in every purse, bag, pouch, wallet, etc. that I own so that I never get stuck in a situation where I am without medication when a migraine strikes.

1. You Are A Warrior

I have been through hell and back but I’m still here. I’m fighting everyday against an invisible, misunderstood, debilitating disease along with 2-3 million others in the U.S. alone. Though I have to admit it has crossed my mind, giving up is not an option. Knowing you are not alone helps. Anyone who suffers from chronic pain is a fellow warrior and deserves credit for continuing to fight everyday.

Expectations Low, Hopes High

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It’s been a little over 24 hours since my first Botox for migraine treatment and though physically I am slightly bruised, mentally I am stronger than ever.

It didn’t start out that way though. Yesterday my morning began full of nerves and of course, a migraine. All the research in the world couldn’t keep my anxiety at bay. I didn’t want to take any triptans before my appointment though because I wasn’t sure what the protocol was, so I just brought some with me in case and decided to ask once I got there. Later the doctor advised me to take them before the appointment began since I wouldn’t start feeling the effects of the Botox right away.

My mom accompanied me to my appointment and even though I am now 29 1/2 and have been attending most doctor appointments on my own for quite some time now, I can’t tell you how grateful I was to have her there. As any migraneurs can attest, oftentimes you are not the only victims of your disease. Your family members and close friends become targets as well and my mom has been on this journey with me from the beginning. My reasons for wanting her there were twofold. First, I wanted her there as a second witness to listen to all instructions and explanations from the doctor in case I forgot anything. Second, I wanted her there because she has been my biggest advocate when I was incapable of being my own. I think its safe to say she has been looking forward to this day almost as much as I have.

Now for a little background info, my neurologist that I have been seeing for the past 7 years is named Dr. Green. Dr. Green does not accept insurance and up until recently charged $275 per appointment. I used to believe the cost was worth it in order to ensure that I get the best care, as Dr. Green is a critically-acclaimed expert in his field. But he recently raised his rates to $525 and although I do get reimbursed for some of my out-of-pocket costs when I submit my receipts to insurance, its just gotten to the point where its simply too much for me to afford. For that reason, I am currently in the process of trying to see one of his fellows, who do accept insurance, for my primary neurology care. Dr. Green works closely with his fellows and recommends them so I trust that I will be in good care. Plus, I watch Grey’s Anatomy and so I feel fairly confident enough to say that I know the difference between a fellow and an intern and I know a fellow has been in the game long enough to know what they’re talking about.

So that’s why when I won the battle to have this Botox treatment approved by my insurance, I decided to have Dr. Coleman, a fellow of Dr. Green’s, administer the injections. Because if Dr. Green were to administer the Botox it would be charted as an appointment with him and I would be charged the $525 rate by his office. Unbelievable.

When my name was called in the waiting room at Mt. Sinai yesterday my mom and I were met by a young Dr. Pace and another pain fellow whose name I did not catch. I was a little surprised not to be shaking the hand of Dr. Coleman, but I assumed these two were just going to get me settled into the room before she took over. Dr. Pace began asking me questions and then answering any that I had. She was very nice and made me feel comfortable. She went over what I should and shouldn’t do for the next 24 hours.

I was told not to exercise, bend over, hang upside down (they actually had a patient do a trapeze workout class once so this is a warning they now must give), sweat, shower (apparently water pounding on the face is a no-no), or rub my face for the next 24 hours. I was advised to get lots of rest. I took all of this very seriously as I did not want to end up with one eyebrow higher than the other or something crazy. So I canceled the workout class I planned for Wednesday morning and embraced the no-makeup, dry shampoo look.

Everything was going smoothly… until I saw her preparing the needles and I came to the realization that she was intending to stick me with them. I casually asked her how long she has been doing this and she replied by dodging the question and choosing instead to explain that this was a teaching hospital, she was taught by Dr. Coleman and is totally capable of administering the Botox.

I mean, I didn’t really know what to think. I’ve always been somewhat of a people-pleaser and I would never want to intentionally hurt anyone’s feelings. I also am known for being terrible at making decisions. However, I know when it comes to my health care I shouldn’t play around and need to learn to speak up for myself because no one else will. And as I stated before, I watch Grey’s Anatomy. I know what a “teaching hospital” is. And I have no intention of letting “007” or any of those other eager wannabe doctors near me.

I kept quiet until Dr. Pace completed prepping everything and then she asked again if I wanted her to do the injections or if she should go get Dr. Coleman. She continued to say she would not be offended either way about 6 times, all the while making me feel like she would most definitely be offended. I looked to my mom for guidance. She gave me nothing. I of course instantly questioned why I brought her. Forget all that nice stuff I said a few paragraphs ago. I felt my face turning red. the pressure was mounting. I again asked how long she had been doing this. She told me 4-8 times a day since July.

Now I’m no math whiz. Actually, scratch that. I don’t do math. Period. I tried to quickly calculate how many months ago July was. I know 4-8 times a day sounds like a lot. But I knew July was in the summer and it was currently still 86 degrees out. Still feels like Summer. So… in conclusion, it hasn’t been that long.

I did a lot of research leading up to this appointment. I watched reviews on Youtube, I read articles, I read blogs, I read Facebook posts — personal reviews, what to expect and how to prepare. The one piece of advice that remained constant in all of my research was that it really matters who is administering the injections. It could not be stressed enough that the person should be a doctor and an experienced one who knew what they were doing. It’s not that I thought this woman standing in front of me was unqualified or incapable. But God forbid something went wrong, I had a bad reaction or it didn’t work. I would always wonder… was it because I let the intern play doctor on me? So I made my decision. And after one long run-on sentence that included the word sorry at least 50 times, I told her I’d prefer Dr. Coleman. And with that, I think I definitely offended someone. But I don’t regret it.

Dr. Coleman came into the room and it was like a breath of fresh air. She was so warm and so friendly. You think this would make me feel at ease. However my nerves began to take over as I realized what was about to happen and the room got a little blurry and her voice became kind of distant and foggy. Once she had me get into THE chair and she had the needle in her hand, I can’t really explain why or how but suddenly and uncontrollably I burst into tears. Next thing I knew a tissue had found its way into my hand and Dr. Coleman was soothing me, asking me how long have I had migraines. Unable to formulate words through my tears, my mom jumped in and I was reminded why I brought her.

It was like my entire journey from 13 years old to now was flashing before my eyes. And all the doctor appointments, the tests, the missed days of school, the missed plans with friends, the strained relationships, the times spent in the dark and quiet, the pain, the effort to get to this appointment had all come to a head and was now showing itself. Dr. Coleman talked to me about hope. I have been trying not to have too much hope going into this appointment. I guess its hard not to though.

After I cried I actually felt even better. It was as if I needed that release. I was able to calm down, I took a few deep breaths and I was back in warrior mode. Whatever was going to happen, now I was ready for it.

Most of the injections were not that bad. Overall it was much less painful than I expected. The migraine I woke up with that morning was on my left side so not surprisingly, I felt the injections on my left side more. The ones at the base of my neck and in my temples were the most painful and the ones in my shoulders I barely felt. Dr. Coleman saved the injections in my face for last.

At this point I was sitting in a chair opposite my mom so we could see each other. The doctor was dabbing my forehead with a tissue and I noticed it was red which didn’t scare me but then I saw my mom’s face. Her eyes were bugging out of her head and she asked, ‘So… how long will she look like that… a few days? A week?’ That’s when I started to panic slightly, but was trying not to move, so asked as calmly as possible, ‘Um… what does it look like?’ And the doctor just said ‘Oh a few hours, maybe a day. Nothing to worry about.’

Later my mom described it looking like I had huge welts on my head, but by the time I even got out to the front desk to book my follow-up appointment they had gone down. This was another one of those, ‘did I make the right decision in bringing her’ moments.

By the time I got home my head was feeling very heavy and the left side of my neck and shoulder were really sore. It felt like I had been beat up a little. Throughout the day I ended up developing a migraine and my neck pain got worse. I took medicine and got in bed early. Falling asleep was hard. Not only because of the pain, but I tried to sleep on my back all night and I normally sleep on my side.

Eventually though, I  did fall asleep and this morning I woke up feeling better but still sore in my left shoulder and my neck. I no longer had a migraine but felt like it could return any second so I took meds to nip that in the bud. I looked myself over and found I have a bruise on my left shoulder, which is interesting to me because that was the least painful injection site. I guess that explains part of the soreness.  It’s also possible that I have bruising on my neck that I can’t see. I’ve been keeping my bra strap off of the bruise all day so it doesn’t bother it and expect to feel sore for the next few days. On my forehead I see the tiniest of red dots where the injection sites were, but the only person who could notice that is me and probably my mom but she’s no longer here so there’s luckily no one else around who knows what to look for.

The doctors said its possible I may start to feel a difference in about a week. I know I won’t be able to really tell if its working until after at least 3-4 sessions. I have my second treatment booked for January 2nd. Again, I don’t want to get my hopes up but its hard after all I’ve been through. So I’ve made a deal with myself. I have a new plan. Expectations Low, Hopes High. Let’s see what happens…

 

Thinking About Tomorrow

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Tomorrow is a big day for me. It is the day I have been waiting for. It has the day I have been working towards for over a year. Tomorrow marks the end of a campaign I started over a year ago, a campaign of epic proportions. Why then am I scared out of my mind?

Botox for migraine is currently the only medication for chronic migraine that has been approved by the FDA that is strictly for migraines. Sure there are the pills I take nightly but those aren’t actually designated migraine medications. One is used primarily to treat epilepsy, another to treat depression and another to treat high blood pressure. Sounds like quite the cocktail, right? Especially considering I don’t have any of those conditions. But I take them because as a side note they also have been found to maybe prevent migraines so I overlook all the other stuff in favor of a glimmer of hope that I may find some relief in them.

But with Botox for migraine comes an exciting new opportunity — the possibility of lessening the amount of medications I take and getting some real results. Finally I have something to thank my guilty pleasure, the Real Housewives, for other than just allowing me to escape my own reality every once and a while. Because believe it or not it was women who were getting Botox for cosmetic reasons who first discovered their added benefit. They realized that as a bonus to a wrinkle-free existence, they were no longer getting headaches. So then doctors did more research and found that Botox actually did treat migraines and the manufacturer began their pursuit of FDA approval and reimbursement for medical use.

After talking to my neurologist and deciding that I would be a good candidate for the treatment, he had one of his employees go ahead with trying to get approval from insurance. Now I know working with insurance is never an easy process. Trust me, when you have as many medical issues as I have over the course of my life you get familiar with it, but my doctor has an employee that’s entire job is dedicated to getting approval for and scheduling Botox appointments for his patients. An entire staff just for Botox approval! Maybe that should have been my first red flag. But never in my wildest dreams did I think it would take over a year to make this appointment happen. Honestly, I thought my medical history would speak for itself and maybe it would take a couple months tops. But with the hoops I’ve had to jump through and the phone calls I’ve had to make over this past year, it’s surreal that this day has actually become a reality. And now that it’s here I’m freaking out.

I mean… 31-35 injections in my forehead, scalp, head, neck and shoulders? Why was I fighting so hard for this again??

It’s actually not so much about the pain of the injections. That I think I can handle. I mean I live with chronic pain everyday. I have a pretty high tolerance as it is. It’s more so the reaction I may or may not have afterwards. The unknown. And what if it doesn’t work?

And of course there’s the fear of changing my appearance. I mean I know the only visible part the injections go in is my forehead. And many will say what a great side effect — a wrinkle-free forehead! But while I love watching the Real Housewives, I really don’t want to end up looking like them before I hit 30. And while, yes, my worries may seem irrational they are mine and mine alone. And because without them I would not be human.

I have to just keep reminding myself it’ll be worth it in the end… Probably. If it works. But I won’t know for at least 9 months as it usually takes 3-4 treatments to really tell so until then I just have to keep a positive attitude and low expectations. One day at a time. And tomorrow is a big day.