Expectations: The Good, The Bad and the Worst

8:29 PM chronicmigraineellie 0 Comments

As I'm learning to navigate my life with chronic migraines, I've realized that it's really hard to talk about what you're going through without people having the expectation that I just want sympathy. It's actually the opposite. I don't want sympathy, and I definitely don't expect anyone to take care of me. What so many migraineurs want to hear is that someone is there for them. Not that they're sorry, not "oh wow your life must be so hard." I appreciate people who recognize my struggle but understand that I am a person too, who just so happens to have a chronic illness. To me, it is more important to have someone realize that my migraines are a part of who I am, but they don't define me. I have amazing friends who I can talk to and they support me, whether they can relate to my problems or not. With my friends, I'll be very open about the fact that I didn't sleep, or make jokes about how I'm a human barometer, but to others it is very difficult for me to feel like I can explain what I go through without feeling like I'm burdening them.

Migraines come with immense guilt. We feel guilty that we can't make plans, that we are unable to function sometimes, or that we are letting down our families and friends and racking up expenses. It took me almost 3 years and starting this blog to realize that I am not a burden. I am not someone to feel sorry for. In fact, I've learned a lot from my experiences. I have more medical knowledge than most of my friends so I can help them take the right pain killer for their problem or teach them some of my tricks for functioning while extremely nauseous. I know how to give myself shots and I have an insanely high pain tolerance. But most of all, I feel like I have a greater understanding of other people's problems because I know what it's like to struggle.

As finals week is quickly approaching, I've been reminded of the daily struggle that I go through. I was very luckily migraine free for 24 days (24 whole days!!) an that ended this week when I had a two day migraine. I got very lucky and was able to function decently well through them, but it still was disheartening to realize that no matter how hard I try, this will always be a part of my life. While that may suck sometimes, I also realize that it's taught me a lot. For example, my time management is great, because when my head is working with me I get so much done. I also am great at functioning when feeling terrible, and realizing when it's time to take a break. I also realize how important it is to open up to people and talk about things in my life so that I don't get a migraine from not having my emotions in check.

As my first semester is starting to come to an end, I'm very thankful for my friends, who have encouraged me to open up about my migraines so much so that I trust them so much and am not scared of judgement from them. I still do downplay my condition when meeting new people, but I've realized that in order to educate others I need to open up about my condition. Change will never happen if you stay silent. If you or someone that you know has migraines, remember that it truly is an invisible illness and oftentimes I will go around with pain and not tell anyone. Remember that everyone has their own struggle, and that no matter how okay that a person may seem, they may be two seconds away from breaking down. Personally, I try to have a "look good, feel good" motto where even if I'm feeling absolutely terrible, I'll take the time to put on makeup and dress up a bit so that I can feel a bit better about myself. It's the small things that get you through the day, especially when you have a support system of people who love you and care for you more than just for your migraines.

I hope everyone has a stress-free finals week, Happy Chanukah and a wonderful rest of the week!



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Gluten-Free Thanksgiving

5:03 PM chronicmigraineellie 0 Comments

Ah! It's been so long since I last posted, and I am so sorry that I've been MIA! School and a capella have been taking over my life and it's left very little time to blog. It's almost time for finals so this will probably be my last post for a little while until I'm back home for winter break.

I thought I'd talk a little bit about my first gluten-free Thanksgiving and the how it was. I am in no way endorsing the products that I'm going to talk about, this is just what I've found to be the best for me! I was with my family, and Thanksgiving was 5 days full of family and food. I was a little bit worried that I was going to struggle to find things to eat, but we ended up going to my savior and holy grail,Whole Foods, which has some of the best gluten-free items I've ever had before. I started off by grabbing my favorite brand of gluten-free bread, Canyon Bakehouse, which is the most bread-like gluten free bread on the market in my opinion. That loaf of bread got me through numerous lunches where otherwise I would have just been eating deli meats by themselves. I also grabbed Udi's double vanilla muffins, which we also get at my college.  I also love the double chocolate muffins too! These were my breakfast for the week, which was wonderful because they taste like regular muffins and not like cardboard.

Moving onto the actual Thanksgiving feast, my wonderful mother found gluten-free cornbread and proceeded to make an amazing stuffing out of it with lots of veggies. When I brought back leftovers for my friends at college, they gave it their stamp of approval.
Our turkey and cranberry sauce (a recipe that has been passed down through my family) were both gluten free and staples in any thanksgiving meal. It wouldn't have been a true thanksgiving without sweet potatoes with marshmallows, so of course I loaded up my plate with that.
Walking into Whole Foods last Tuesday, I was worried that I would not get dessert because there wouldn't be any gluten free pies or cakes. I was very wrong, and I strongly encourage everyone to try the Maine Pie Company's pies. We got both pecan and pumpkin pie, which turned out to be amazing.
What everyone in my family failed to realize was that these pies were not pre-baked, so when dessert rolled around, I was surprised to find soupy pies in the wrapping! With some quick thinking, many of my family members stepped in and helped me to bake the pies so that I would be able to eat dessert within an hour! I then proceeded to eat half of the pumpkin pie by myself for the next day and a half.

I also tried local gluten free bagels from a bakery in New Hampshire, which given how most gluten free bagels taste like cardboard, I had very low expectations. I was pleasantly surprised that these tasted more like regular bagels and that I could finally have my bagels and lox that I had been craving since I went gluten-free.

All in all, it was a great Thanksgiving, filled with family, friends and food. Unfortunately I forgot to take pictures of all of products that we used but that will be a task for next year's Thanksgiving. Did you have a favorite gluten free food or recipe that you want to share? Comment below or share! I hope everyone had a lovely, migraine-free Thanksgiving vacation, and that you all have a lovely couple of weeks. Good luck to everyone who has finals!

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A Pain in the...Thigh? How I Got Over My Fear of Shots

12:10 PM chronicmigraineellie 0 Comments

I've had migraines for 5 years, severe migraines for 2 years. I've come into contact with a lot of needles, whether it was for blood draws, IVs or abortive shots. Until this past week, I was completely unable to give myself a shot because I was terrified (and rightfully so). I convinced myself that I was always close enough to the doctor's office to have them give me the shot, even when I get completely needle-phobic and start running away while migraining. Yet something changed this week when my doctor told me that I would need to do 3 shots a day for 5 days to break this migraine cycle. Maybe it was because I was in college, or the fact that my mother was 3,000 miles away, whatever it was, I sat down Wednesday night, broke the DHE ampule and started filling the syringe. This was much farther than I had gotten in any of my other attempts to give myself shots. I realized, however, that I could prep all I wanted but if I was going to do this alone, I would never get it done.
So I called one of my friends, who miraculously still likes me, even after he spent an hour calming me down so that I could actually administer the shot. I also called my dad who also helped. The saying "it takes a village" is so  pertinent to that situation. But in truth, I was glad that I had support. A year ago, I would never have been able to give myself a shot. There was something that switched in my head that made me realize that I needed to do this, or else I wouldn't get better. While giving myself shots isn't fun, I realized that I could either take my health into my own hands and get over my fear, or go to the hospital for a week to recover. The thought of a long hospital stay scared me, especially with school going on and falling behind in my classes looming over my head. So i did it, and I am now on day 5 of my shots. My legs are bruised, my muscles hurt, but I am better. I can function and I'm happy.
Maybe it was the thought of stabbing something sharp into my leg that was counter-intuitive, but I learned a lot about myself that Wednesday night that I gave myself the first shot. I learned that I can take my treatment into my own hands, and get over my fears. I think that I finally realized that I can conquer my migraines, that I don't need to be scared of things because I am a strong person. I push through things in order to get them done and that is exactly what I did with my shots. Surprisingly, it was a lot easier than I thought that it would be. As long as I stayed calm, they went off almost without a hitch, except for the cursing as I would try and walk off the stinging of the DHE. For non-migraineurs, DHE is a wonderful old drug used to treat migraines (very effectively!) but it hurts like heck when injected intramuscularly.  I feel like I should apologize to the person living above me because after I do the shots there usually is a lot of shouting curse words as I try to walk to get the medicine further into my muscle.
As I write this, I'm smiling to myself. It's kinda funny, because learning how to give yourself shots is not a normal 19 year old thing to do. But I'm so proud of myself, for being able to conquer my fears and start to recover. For me, giving myself a shot is the first step to truly living my life in the "real world."
While this has been a bit of a rambling post, I wanted to give some words of advice. Never be afraid to conquer your fears if it will make you feel better. If you're struggling to give yourself a shot, I have a couple things that help me mentally and physically prepare. The first is to ice your injection site, it hurts less when the site is numb. Secondly, have someone there with you who will not leave until after you do the injection. You will definitely go through all 5 stages of grief, (at least I did) and attempt to get them to leave, but they should be steadfast in staying there. Third, who needs some pump up music? For some odd reason, "One Step, Two Step" by Ciara ft. Missy Elliot got me to actually put the needle on my leg as I was singing out the lyrics. Whatever works, right?
It's all about finding the small things that boost your confidence in order to help you actually get it done. Whether it's the idea that you are going to feel better, or how proud your mom is going to be when you tell her that you actually gave yourself a shot, know that this is for your benefit and that it is totally normal to feel scared and unsure.
Wow! That was a lot of rambling, and I'm going to post this anyways because this is what I'm feeling right now. I hope that anyone who has been struggling with shots or other procedures gets a little bit of confidence from this, and that it helps to show that there are other people who are struggling with the same thing!
I hope everyone has a wonderful, migraine-free week!

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Telling "My Story"-Navigating Dating and Friendships

9:18 PM chronicmigraineellie 0 Comments

I've come to realize how terrifying it is to tell people about my migraines. What people don't realize is that my migraines are a very personal, painful and current part of my life. Especially when things could possibly get romantic, it terrifies me to think that someone might leave me because of my migraines. Even if someone is just a friends, it terrifies me because I feel like I have to filter what is going on with me so that way I don't freak them out or make it seem like I'm some sick person who needs their sympathy.
It frustrates me, because sometimes I just need someone to talk to about my problems. I'm very lucky to have friends at home who were very involved and supportive of my illness. Yet uprooting and moving across the country has created a whole host of new issues. It's definitely hard when I'm just starting to get to know people to feel comfortable talking to them about what's going on in my life. Frequently, I find myself putting on a mask and pretending that I'm better than I actually am or downplaying symptoms. While I know that this isn't healthy, it reinforces the loneliness that I feel. I recently joined a Chronic Migraine Support Group on Facebook, and it''s helped a lot in providing visibility into other people's struggles. Yet even though I know that there are other people who struggle, the number of people in my life who personally suffer from migraines is very small, especially to the severity that I experience.
Having migraines is very anxiety-inducing, and even the most calm people will feel stressed and impacted. There is an overlying notion of the unknown which affects every part of your life. You never know when the next migraine will hit, when it will stop, or how long you'll feel the side effects. The unknown is the most terrifying part, because you can be relatively stable and enjoying life and the next moment you're lying in bed in pain.
As I'm writing this, I'm personally stressed out as I've had energy problems for the past week and an increase in frequency in my migraines. I'm working out transportation to go see my doctor at Yale on top of my class work and everything else that I have to do. And to be quite honest, I'm absolutely terrified that I will snowball again and become so sick that I can't function again. It feels weird, because this is so personal and I wouldn't tell this to half the people that I know. But it is accepting this vulnerability and showing it to others that informs people, and lets them know what is going on with migraineurs. As my parents have told me, communication is key. I am the only one who knows how much pain I'm in and how much I'm impacted, and if I don't say anything about it, I only suffer in silence. To everyone out there, migraineurs or not, it is important to convey how you are feeling, because you will feel better talking about it. I feel better even writing this post.
This is not to say that I don't have fears about dating and friendships, but I know that out there somewhere, there is going to be someone who understands and supports me. Sometimes, it's important to show that vulnerability. Sometimes it's important to hide. It's all based on how you feel, but always know when to ask for help.
I hope that this post made sense, as I'm quite emotional and tired. I hope everyone has a lovely migraine free week! And who knows... this may not be my only post for the week!

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Aches and Pains

1:48 PM chronicmigraineellie 0 Comments

To many, the actual migraine may be the worst part of having chronic migraines. While it is true tthat it is the most excruciating and the worst pain in the world, its the side effects that are what is the worst and most stressful for me. After a migraine, everything is heightened, which makes even going outside seem daunting. My sense of smell, my sensitivity to light and sound, but most of all my aches and pains. I usually feel like my joints have been pulled apart and stuck back together, and my back and neck sometimes are so stiff that I can barely move. What's worse is that usually I have to go about my day pretending that nothing is wrong, smiling through the insufferable pain that makes me want to lie in bed all day. It's never fun to deal with any type of pain, especially when it just pops up out of no where. For example, as I am writing this, my back and neck feel as if someone punched it in and kept their hand there. It's not a fun feeling, but I've learned how to make it better for myself. So here's some tips to alleviate your aches and pains from yours truly.
1. STRETCH
Yes, it will hurt. Yes, it's not fun at all. But thank my mother for telling me to do this even when I would almost cry from the pain. It helps! I do some yoga usually,  very simple poses in order to try and loosen up my muscles. I usually start with child's pose, really trying to stretch out my shoulders and lower back. Them, the cat/cow pose on your hands and knees where you push your belly out, curving you back with your head up, and then breathe out, lowering the head and creating a bend in your back. Then there's also neck rolls, which are very helpful in loosening up your neck. While these will definitely not take the pain away completely, they will help you get to a point where it is possible to get out of bed. Furthermore, taking a bath or a hot shower where you slowly stretch you muscles to try and get them to release under warm/hot water.
2. Breathe
You may be surprised to hear this, but when I am in pain, I have to make conscious decisions to breathe. It's not that I forget, it's just that the pain takes over in my head and I forget to take deep breaths in and out. This can also help to alleviate the pain but also to calm you down and get to a point where you can think rationally.
3. Massage the places where it hurts.
If you don't have someone who can do it for you, you should try as much as you an to do it yourself. It doesn't have to be a lot, just enough to move the muscle a little bit to give some release.
4. Remember that the pain is temporary
It may seem like the pain goes on for hours, but always remember that at some point, this will go away.  Sometimes it is hard to remember that you aren't alone, that you don't have to put up a front, I am guilty of that too. Reach out to close friends and family for positive reinforcement, and remember, that whatever you can get done that day is amazing.
Lastly, remember that I am always here if someone needs to reach out. I know how lonely this struggle can be, because I'm living it too. You are not alone, even though it may feel like it. There are many places online where spoonies and migraineurs can talk about their problems and get advice from other spoonies and allies.
I hope these tips help, and I hope that the rest of your week is migraine free!

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Spoon Theory-Why it's Important for Non-Spoonies to Read

4:38 PM chronicmigraineellie 0 Comments

I had heard of the Spoon Theory before, and many people with chronic illnesses refer to themselves as spoonies (myself included!). Yet I read the actual article this past week, and I felt that it was so important to share with everyone because it struck a chord in a very deep personal place that I had been struggling with. After a couple of rough weeks, I finally stopped having migraines daily for the first time in about two weeks.  I was up to my neck in work, struggling to get everything done and trying to prioritize. While some of my friends can pull all-nighters and stay up until 3 or 4 in the morning, I can't do that for risking a migraine or even my possible functioning the next day. As I am currently trying to navigate how I live my life, it was very hard for me to see other people work and live their lives in such a normal way. For as much as I have come to terms with my migraines, I still feel like such an outsider. I have a couple friends here who I can talk to, but overall I feel unable to talk to people about my problems without making them feel bad for me. I don't want to make them feel bad, I just want someone to understand what I'm going through. Reading the Spoon Theory, it made me think of all of my friends that I wish that I could talk to about my daily problems. I think it is very educational, and necessary for understanding someone who has any chronic illness. As I am writing this, 4 days gluten-free again, and just grateful that I can focus,write and sleep again, I remember how lonely I felt and how lonely I feel when faced with explaining my migraines and my daily life to people who can never seem to understand it. I'm going to look into starting a chronic illness support group at my university, because it's important to build up a network of people who understand what you're going through as well as educating people who can become allies in your time of need. 
So here's the link to Christine Miserandino's blog, "But You Don't Look Sick." Her blog is truly amazing and worth the time to read her articles. 
Finally,  if you are reading this in support of someone with a chronic illness, I encourage you to read her article, and even test out the spoon theory with your loved one or friend who is suffering, to really understand what they are going through. For all my spoonies out there, remember that we can live our lives,  one day at a time.
I hope that everyone has a wonderful migraine-free week! 

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Update- My Life and other Ramblings

4:40 PM chronicmigraineellie 0 Comments

I'm so sorry that I didn't post last week. My life has been a little bit crazy in the past two weeks, partially because of migraines and partially because of college. I did, however, end up in the ER two weeks ago for a really bad migraine, something that I had hoped was never going to happen, or at least not so soon. It was terrifying to be so unstable for that week. But being unstable and having to navigate my life actually made me more confident that I am able to handle the flare-ups that happen in my life. My professors are some of the most accommodating people, and it made me so happy to be able to talk to them openly about what disability resources I would need and attendance. I was on a 5 day push of three abortive medications, but that's what ended up breaking that flare-up. I'm writing this update because 1) I don't have time to write original material given the essays that I have to write soon, and 2) because I doubted myself and what I am capable of doing. I think that it is important that I realized how vulnerable I am, but also how strong I am at the same time. It is amazing that I can have a migraine and then drag myself out of bed the next morning and be able to be somewhat coherent in class. We migaineurs do not get enough credit for what we push through, so this is a statement of that. For anyone who is struggling right now and needs to talk about how they are feeling, please know that I am always here. I've lived through a lot, and am still learning about my condition every day. Migraines are a trial and error illness, between triggers and medications, it is trial and error learning how to navigate life through this.

For everyone out there struggling, I am proud of you. I am proud of you for looking forward and knowing that someday, this will pass. That one day, your migraines will become manageable and you can truly life your life to the fullest. Also know that even if you cannot, you are still important and your life is worthwhile even during times when you are sick. I know that this is a sappy motivational point, but it is so often that people focus on our illness and not on our daily accomplishments. It's important to feel proud of yourself if you're able to get out of bed on a bad day, and if you can get ahead in your work on a good day. It's the small things that matter, and the most important thing is that you believe in yourself.

I promise that next week I will have an actual post, I just felt like this was necessary. I hope you all have a lovely, migraine-free week.

-Ellie

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I Just Want to Be "Normal"

7:08 PM chronicmigraineellie 0 Comments

Living with a chronic illness can often make you feel like you are the farthest thing from normal. From canceling plans to staying home from school, the chronic unpredictability takes a toll on our mental states. While I've been a victim of this mindset, I've also realized that the definition "normal" is independent to every person.
While I wasn't a person in high school who was going out every weekend and hanging out with friends all the time, my "normal" was learning how to live with my migraines and still enjoy my life. Now, in college, it's trying to manage all of my activities while also managing my migraines. For other people, their "normal" might be completely different than mine, and that's completely okay.
It's important to realize that even if you don't fit the mold for a cookie-cutter student/employee/person, that's good. You have something that makes you an individual, even though it can sometimes hinder your general quality of life. For me, my silver lining of my chronic migraines is that I've become an extremely strong person who can deal with a lot of problems thrown my way. I've also learned how to advocate for myself, deal with people who don't understand my illness, and recognize when I need to ask for help. For me, that has made me a better, stronger and more mature person.
Now, it's taken me almost 2 1/2 years to come to this mindset, it doesn't come just overnight. I've spent many nights crying because I felt like I wasn't normal and I wasn't following the "track" of my fellow students. This just lead me to realize that while no one says it out loud, everyone is on a different track. Everyone, whether they have illnesses or not, struggles and needs help. If you look at it this way, everyone is normal, because there really is no definition of "normal." My normal is waking up, taking 4 pills in the morning, doing what I need to do, taking 2 more pills at 7:30, doing whatever else I need or want to do, getting ready for bed and taking an oral solution of another medication. It sounds intense, but this is what helps me to function. There is a set routine of what I do and what I take, even if my day deviates into becoming a "migraine day."
The word "normal" is independent, it takes on a different meaning for each and every person. In a society where trying to conform is applauded, it sometimes makes it hard to realize that no matter what you are going through, you are "normal." There are other people going through what you are going through, and you should never feel ashamed to take a personal day or to make excuses for your illness.
Become confident in your "normal," in your own routines. Become comfortable in what you need to do to make yourself healthy and happy. It's a hard journey, one that even I'm still struggling with. However, by struggling and accepting this, dealing with your illness will hopefully become easier because you won't feel like an outcast in society.
Enjoy your week, and comment below what you think your normal is whether you have an illness or not!
Have a lovely, migraine-free week.
xoxo- Ellie

0 comments:

The College Transition

11:44 PM chronicmigraineellie 2 Comments

College is hard. Everyone tells you that it'll be the best time of your life, but they forget about the transition, and how hard it can be on your body.
My orientation and first week of classes were amazing. I loved every second of it and made so many amazing friends. But emotionally, it was so hard for me to keep my head up, especially when I had two migraines a couple of days apart. I felt like I was losing control, like I wasn't ready to go off to college. Thoughts like this can consume anyone with a chronic illness, because life is so unpredictable. 
For days, I put off telling my new friends about my migraines, until I felt comfortable enough sharing what was going on. I felt very out of control; I had a new environment, new triggers, my sleep cycle was changing. All of these pointed to me being terrified that I couldn't succeed.
Now that the first week of classes is almost over, I know that I can do this. I needed to have a migraine in order to realize that I can do this by myself.
It creates pressure trying to venture out on your own with an illness that is so hard to control. During the past two weeks, I've felt helpless, tired and confused. But never give in to those emotions that tell you that you can't succeed.
I've found that telling myself to break it down helps a lot. I use planners, to-do lists and calendars to help keep everything in my head straight. I'm enjoying college so much, and I'm so happy here. Sometimes, it's okay to admit that you aren't okay, just so you realize it and can keep moving forward. Never let your chronic illness, migraines or other, keep you from doing what you want in your life.
As a way to sign off on this semi-emotional post, I have two mantras that I have written in my room and that I say to myself.
1. Don't forget to breathe.
Whether it's a migraine, test or social situation that is giving you anxiety, remember to breathe. Breathe in, hold, breathe out. Do this five times and it'll help you calm down and focus.
2. You can do this.
A little bit of positive affirmation can really go a long way, especially when you say it to yourself. Say "you can do this," and you are one step closer to actually doing it.
And finally, a quote that I put on a whiteboard bubble in my dorm room by Jimmy Dean:
"I can't change the direction of the wind, but I can adjust my sails to always reach my destination."
I love that, and hopefully these speak to you and help you through all of your days. I hope everyone has a migraine-free lovely week!
xoxo,
Ellie

2 comments:

So Many Emotions? How Do I Deal?

12:34 AM chronicmigraineellie 0 Comments

As people with chronic issues know all too well, feelings of defeat and hopelessness battle happier feelings, and win most of the time. It's hard to feel happy when you feel like the world is crashing down on you and you can't seem to do anything "normal." How do you deal with this mentality when it seems every doctor and sometimes friends have given up on you?

My first piece of advice is to find something small that makes you happy. Whether it's lighting a candle or incense, cuddling with a cat, or making a pot of your favorite tea, find something that truly makes you happy. It's the small things that make the biggest difference in your mental health. Personally, I love taking bubble baths and watching my favorite tv shows. There's something so relaxing about being in a bath that for a second, it takes away your pain.

If you feel like you cannot talk about your issues with some of your friends or family members, the simple answer is don't. People don't have to be in the loop all the time about your medical issues. If you are constantly explaining your condition to everyone around you, you will be reliving all of your pain every time. Find a short summary of your problems to tell most people if asked, and keep the details for your family and trusted friends. Not everyone wants to hear about that procedure that you had done and how you hope it will help you. That being said, if you have a trusted friend or two who actively support you, talk to them about what you're worried about.

If you find that talking about your problems is helpful, talk to a medical professional. Therapy is amazing at figuring out your true emotions during such a  time where you could have twenty different emotions bouncing around your head. Therapy helps to put perspective on your struggle, and help you deal with what is going on.

Make a playlist that you listen to when you're feeling down. For me, it's helpful to have a go-to playlist that can cheer you up even a little bit when you're feeling terrible.

Another tip is to eat something that makes you feel better. This could be a cookie, a cupcake, a piece of fruit or nuts. It doesn't matter what it is as long as it makes you feel the tiniest bit better.

Finally, remember that you are "normal." Having an illness does not make you any less normal. Migraines are an illness that impact quality of life, but you have the ability to make your life as wonderful as you try to make it. Listen to you body and make smart decisions. However, if you are stuck inside on your own volition because you're worried, you have the ability to face your fears and live a little bit. I've found that if I keep myself in my bubble of comfort, I don't try to take advantage of the opportunities around me. If I listen to my body and go and hang out with friends and leave when I get tired, I've made my life a little bit better and happier without hurting my health. Take care of yourself, but have fun too.

It's important to note that talking about your issues can help you feel better. There are people, friends and family, who support you and want to hear about your problems. Your mental health should never be impacted by your illness, and you can help prevent feelings of helplessness and depression by talking to a friend or a medical professional.


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5 Things to Do When You Have Food Sensitivities

11:30 AM chronicmigraineellie 0 Comments

As someone who is gluten "light," cannot have soy, tyramine and aspartame as well as rapid rise yeast, I know what it's like to sit in a restaurant and worry about hidden ingredients. I've been gluten-free without much change, and I've sat through many conversations about my different intolerances with people who have no idea what they are talking about. Here's some tips on how not to get upset or angry when someone doesn't understand your sensitivity.
1. Own your sensitivity
 There is no need for you to feel embarrassed about it. A lot of times I've felt embarrassed to ask and subsequently have gotten migraines because I have assumed that there would be nothing problematic in my food.
2. Do not be afraid to be nosy about the ingredients
If you feel like you're asking too many questions, you're not. Remember that this is your health, and that a couple questions that could unveil a hidden ingredient is worth more than feeling terrible for the rest of the day. (Or for a couple days after depending on how long that specific migraine lasts)
3. Make sure that waiters/staff actually check with the kitchen if they are unsure.
This past week, I went to a frozen yogurt store. Soy can be hidden in frozen yogurt, so my first question was if there was any soy. There were two girls working behind the ice cream bar, and the first one immediately said, "Everything has soy." I'm used to not being able to have things, so my boyfriend got some yogurt and as we were paying and about to leave, the other girl says, "Oh actually, none of them have soy." I was so confused, and I soon became agitated. While I appreciated that the second girl checked, I was extremely unhappy with how the first girl had acted, making me feel upset about my sensitivities.
That one incident aside, some waiters (not all) say that they check and actually don't. Just make sure that you ask, and if they don't come back with an answer, ask again.
4. Allergies are taken more seriously than sensitivities
At many restaurants and other dining establishments, waiters and other people will understand an allergy better and take it more seriously than a sensitivity. For me, it is easier to say that I am allergic to soy than to explain that it can trigger migraines. After a while, it will become much easier to say that you have an allergy than explain your medical problems to a stranger.
5. Keep a log of foods that trigger you
Sometimes, you'll try new foods which is really awesome. It's not so awesome when you try that new food and trigger because of it. Take note of what you can and cannot have, and how it can present itself in menus. For example, I can't have aged cheese. I've learned that I don't need to avoid all cheeses, just the ones that have been aged for more than 6 months. Keeping a list on your phone is very helpful, or looking up ingredients in a dish can help you figure out what you can and cannot eat.

I hope that these tips were helpful, and that you have a lovely, migraine-free day.

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My Background

12:12 AM chronicmigraineellie 0 Comments

I realize that I should probably talk about my story so that you all have background when reading my posts.
I got my first migraine the spring of 9th grade, almost 3 1/2 years ago. At that time, I was an episodic migraineur, meaning that I was having less than 15 migraine days a month. At this point in my life, my migraines did not impact my life. However, the next spring, my 10th grade year, my migraines started becoming more impactful. I saw a neurologist who prescribed me Imitrex and Cambia. I could still function, but I was having memory and word-finding problems. I had to stop playing soccer because my migraines messed up my training schedule and my ability to be a part of the team.

My migraines escalated in my junior year. I was diagnosed with chronic intractable migraines, meaning that I was having more than 15 migraine days a month that did not respond to medication. I was then diagnosed with status migranosa (migraines that don't stop and continue for at least 72 hours) and stopped going to school for 3 months and I actually lost all memory of that time period. I had significant neurological damage during and after my migraines. At this point, I was prescribed different medications like Elavil, Propanalol ( which gave me bronchial spasms), the sister drug to Propanalol, beta-1 selective blockers (which slowed my heart rate down too much) and a couple other drugs that I forgot. I was also shuttled around to 4 different doctors, who mostly prescribed a different medication and shrugged their shoulders and said that they couldn't do anything. Finally, I found a doctor who was willing to take my case. In our first meeting, he said "I'm going to give you your life back." Hearing those words gave me confidence that he could, and he has. He figured out that I had both hormonal and non-hormonal migraines, something which other doctors struggled to figure out. I was already on birth control from the previous year to combat the menstrual migraines, but he prescribed me Topomax as well as Maxalt as prophylactic and abortive drugs. I was also put on an NSAID called Indomethacin/Indocin, which I fondly refer to as an "industrial strength" pain reliever. He also used IV DHE (dihydroergotemine,) which literally saved my life and allowed me to get almost instant relief. I was also taken to a rheumatologist who did full panels, and thought it was lupus for a brief time, but ultimately came up with no answers. For that time, I was becoming more stable and was able to finish my schoolwork and continue to catch up over the summer.

My senior year, this past year,  I was very stable from August to November, until I started to deteriorate and "snowball" into multiple migraines a week. My doctor started playing with my medications, and put me on a higher dose of Topomax as well as an anti-alzheimer drug called Namenda. Andy Charles at UCLA had done a small study using Namenda in migraine patients, but I was one of the first non-trial patients to be put on it. This was another miracle drug, and helped my cognitive neurological problems that came with the migraines. However, I did lose my ability to read and write as well as worse focusing problems than the year before. I stopped going to school for about a month, and I had energy issues, with constant fatigue and problems having energy after simple tasks like making myself breakfast. By this time in my illness, I had gone through 2 EKGs, 2 MRIs, multiple blood panels and one ER hospitalization. My doctor talked about how I may have to travel to go see other doctors nationally, but thankfully it never got to that point. I had been having side effects from the Topomax, and after trying Adderall for 2 days with terrible side effects, I was taken off almost everything except the Namenda and Topomax, as well as triptans. I had been using Sumavil Dosepro as well as Maxalt and Relpax. We figured out that I was having rebound headaches from the triptans, and I was prescribed DHE 45, the intramuscular version of DHE as well as other pain-relievers. I started to get better, and we added more supplements and another med to try and find the right cocktail. Luckily, this was the last time that we had to do that. I am currently on Nortiptylene, Migrelief, Centrum Silver, Namenda and birth control. For abortive medications, I'm on the Indomethacin and DHE nasal spray, which is so much easier than self-injecting or getting someone else to inject the DHE 45.

Surprisingly, allergies are a main cause of my migraines. We had absolutely no idea until about two months ago when I got skin-testing. I am extremely allergic to tree pollens, which correlated with the tree season in Los Angeles and when my migraines were at their worst. Currently, I'm undergoing immunotherapy and feeling so much better. I still get triggered, but my migraines are much lower on the pain scale and I don't have the same cognitive issues.

While I know that this is not the end of my journey, I'm so thankful that I've found the right solutions to give me stability at the moment.
TLDR; I've gone through a lot, and I figured that some people might benefit from knowing the medications I've been on and my experiences.

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Hello!

11:10 PM chronicmigraineellie 0 Comments


As many people with chronic illnesses do, I decided to create a blog about my experiences: the frustrations, the ups and downs, and how I've dealt with it . As I'm reaching a point of stability for the first time in 3 years, I realized that I needed to share my experiences because I used to feel alone in my struggle. I realize that by putting my story out into the open, I can potentially help others through their own struggle. Migraines can be devastating, ripping apart relationships and putting life on hold. If someone reads my blog, the one thing that I want them to know is that migraines do not define you. They make you feel like they are your entire life, but in truth they are only a small part of you.
I hope to write some posts about dealing with food sensitivities, how to manage your triggers, what to do when doctors give up and other helpful posts. If you want my opinion on anything, then please do not hesitate to comment below. This is my first time blogging so it will definitely be trial and error! I hope that everyone has a migraine-free, wonderful week.

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