National Migraine Awareness Month

June National Migraine and Headache Awareness Month

I’m sure you have heard of other National “insert illness” Awareness Months before. June is the awareness month for migraines and headaches. The goal is to raise awareness and recognition for migraine treatment, patients, and more.

As a migraine sufferer I know how hard it is to have other people understand what it’s like to live day to day with the constant pain of a headache or migraine. I understand how debilitating and lonely it can be. What gives me hope is knowing that there are millions of other people who want to raise awareness too. People who want to share their stories and join the fight to find new research and treatment options.

My migraine story started when I was in high school and have continued throughout my twenties. I don’t know if I will ever not have a headache or migraine but the odds seemed to be stacked against me. However, three new treatments options were released in 2018 so I have hope that something will be created that will help me.

If you are struggling with migraines or headaches, just know that you aren’t alone. There are millions of other people in the world who are also suffering which is why it’s so important to raise awareness. If we all stand together we have the opportunity to have our stories make an impact and bring about real change.

Migraines are an invisible illness. When you call in sick from work with a “headache” most people think you are lying or should suck it up. But for some people, including me, living with the constant head pain is reality. We are told that we look healthy and not chronically ill.

Well, this is what chronic migraine looks like. I drag myself out of bed every morning, brush my hair, and throw on enough makeup to look somewhat decent. I don’t feel good, I want to go back to bed, but I go to work and continue living my life the best I can. If I really don’t feel good I work from home or take a sick day. I know I’m lucky to work for an amazing company but I’ve heard other people’s stories about being fired for not being able to come into work.

This pain could ruin my life if I let it. I could stay in bed all day and feel sorry for myself. But I won’t. I’m out living my life and talking about how I feel. I want spread awareness. I want people to know that headaches are a real problem. I want doctors to find new treatment options. I want to be taken seriously.

I won’t let migraines ruin my life. Some days are better than others. Some days feel like the worst days of my life. But I know that things could be worse. I’m still able to work, own a house, be a dog/cat mom, and travel. Migraines make all of these things so much harder but it’s rewarding to know that I am able to overcome the pain most days and accomplish big things.

June 21st is the Annual Shades for Migraine Awareness Day led by the Association of Migraine Disorders. If you see people on social media posting pictures of themselves wearing sunglasses with the hashtags #shadesformigraines and #MHAM this is why. These people are sharing their support for the millions of people worldwide with migraines.

I’ll be wearing my sunglasses on June 21st. Will you?

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Image via American Migraine Foundation

 

Anxiety Won’t Ruin My Life

Anxiety Won't Ruin My Life

I’ve been in a bit of a rut lately between my personal life, work, and my mental health. I’ve had anxiety for as long as I can remember and it seems to come in waves. Many days it’s smooth sailing and then other days I’m drowning in my worries. I’m normally able to function just fine but sometimes I can’t even make myself leave the house.

I think the trigger to these last couple of weeks of anxiety has been the fact that Brett took a new position at his job and has to travel a lot. I spent a week alone while he was in Atlanta and I barely slept the whole time he was gone. Every noise woke me up and had me searching all the rooms in our house for an intruder. I contemplated staying with my parents but I’m trying to be a “real” adult and suck it up.

I have come to the conclusion that anxiety is something I will just have to live with. It’s not always easy but I know I’m far better off than many others who suffer. I won’t let anxiety ruin my life or keep me from doing the things I want to do. I almost let my anxiety keep me from studying abroad and that would have been a terrible decision.

Sometimes you just have to throw yourself outside of your comfort zone and hope for the best. I’ve found that standing up to my fears has made me much stronger.

How do you cope with anxiety?

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My Experience With Trokendi XR For Migraines and Headaches

Trokendi XR; Chronic Migraine Treatment

I’ve been working on this post of the past couple of months and I want to start off by saying that Trokendi and Topamax are two of the most prescribed medications for migraines and for some people they can be life-changing. I am part of a Migraine support Facebook group where people compare medications and I have heard fantastic reviews for both Topamax and Trokendi. If you are suffering from headaches or migraines please listen to your doctor and be willing to try new treatment options even if you have heard they may not work and remember that this is just one person’s experience with the medication.

You can find my migraine story here if you’d like a little background information on my personal journey with chronic migraines.

I’ve had two Neurologists recommend that I take Trokendi XR. They would have had me take Topamax but my insurance doesn’t cover it. I really wasn’t sure if I wanted to try Tokendi but I figured it was worth a shot.

I started off by taking 25 mg and increased my dosage gradually over a few weeks until I maxed out at 100 mg. Each time the dosage increased by 25 mg and I carefully followed the directions provided by my neurologist. The picture at the top of this post shows a couple of the sample packets that my neurologist provided. He also gave me a card that had a number I could call in order to receive Trokendi free for one year! I ended up calling the card and it was very simple to setup and for my pharmacy to figure out.

After a couple of days of taking the 25 mg of Trokendi I began to notice my fingertips tingling. After a week my toes and feet also tingled. It felt like my hands were asleep all the time and I had a hard time being on my computer at work which is how I spend my 8+ hour day. As the dosage increased the tingling also increased to the point where it was really painful.

The second thing I noticed were my sleeping habits. I am generally a pretty good sleeper, especially when I have a migraine. But when I was on Trokendi I could go days without sleeping. I was so uncomfortable that falling asleep wasn’t possible. If I did sleep for a few hours I would wake up super early and not be able to go back to sleep. Some days I’d be so exhausted when I got home from work that I immediately went to bed and slept all night. There was really no in between, I either didn’t sleep or I slept way too much.

My sense of taste and smell were the next things to go. My taste buds changed pretty quickly and I started to have aversions to food that I had always loved. The types of food that I could tolerate were few and far between. For example, I have always loved the lime tortilla chips but once I started this medicine they tasted so bad that I couldn’t eat them and still can’t to this day. Taste began playing into smell in November when we went to the casino for Brett’s birthday. I had been tasting metal for awhile but at the casino my senses were introduced to cigarette smoke and for weeks after all I could taste and smell were cigarettes. It was miserable!

I will say that my pain was different. I won’t say that my pain went away but it did change. I had more ice pick headaches where it felt like someone was stabbing me in the forehead. The pain was muted by the side effects but it was still constantly present. I had less migraines on Trokendi but the pain of my headaches was still unbearable.

The major side effect that I had heard about with Topamax was brain fog. Trokendi gave me the worst brain fog. I’d be in the middle of a sentence and forget what I was saying. I couldn’t find the correct words and it became frustrating and terrifying.

However, one of my worst side effects was depression. Suddenly I was crying and over-emotional without even thinking about it. I texted my mom one day saying that I think I needed help because I felt so down and I just couldn’t help it. I’m lucky to have such great family and friends who really stepped up during this time to make sure that I was fed and taken care of because I no longer felt like taking care of myself. Because of the depression I knew I needed to be weaned off Trokendi for good.

I’m once again so grateful to have a job with unlimited sick days and the option to work from home. The support of my team during this time was amazing because I was sick the whole entire time I took Trokendi. There was one day where I hadn’t slept in a couple of nights and the thought of dragging myself to work made me break down. I texted my bosses that I wasn’t feeling well and ended up in bed for over 24 hours.

After about 6 weeks on Trokendi I went back in to see my neurologist. After explaining the tingling and depression he decided that I needed to be weaned off of it right away. I spent another couple of weeks weaning off the Trokendi. It’s been a couple of months now and the majority of the side effects have gone away. I still have left over food aversions and my taste hasn’t come back all the way yet.

I really wanted to share my honest experience of what it was like to take Trokendi XR. If you struggle from migraines or any health related issues you know how hard it is to find good advice about what you are going through. I scoured the internet for information about Trokendi and talked to two neurologists about it. I’m by no means an expert but this is how I felt while I was experiencing the effects of Trokendi.

Have you taken Trokendi or Topamax for migraines? What was your experience like?

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I Can Be Healthy (And You Can Too!)

Health and Wellness

It’s been a few months since I posted about gaining weight. The cold hard truth is that I’ve only lost ten pounds since then and have been struggling to keep the weight off.

I’ve struggled with headaches and migraines for the past 7ish years which means that I’ve been on and off medications more times than I can count trying to find a solution. In 2017 I started to gain weight from the medicine that I was on and couldn’t seem to lose it. I gained about 40 pounds very quickly and there wasn’t much I could do. I know that sounds like an excuse but the medicine I was on really does cause weight gain and at the time it was prescribed I was a healthy 23 year old so my neurologist wasn’t worried about that particular side effect.

In 2018 I stopped taking that medication and stared taking Trokendi XR which I’ve talked about a few times in past posts. I was so sick the whole time that I was able to lose 10 pounds in under a month. One of the side effects of Trokendi is weight loss so I worked with a doctor and knew that it was “healthy”.

Now I have about 40 pounds to go before I’m back to my healthy weight. I only really weigh myself when I’m at the doctor because I have such a negative association with the scale.

I wanted to share this post to let you know that my mindset towards weight loss and being “healthy” is going to change. For the past year I have beat myself up every single day for letting myself go. I’ve refused to look in the mirror or be in pictures. I have told myself over and over again that I’m fat, worthless, and that I’ll only love myself if I lose weight.

But guess what?

All of those statements are wrong. I’m not worthless. I shouldn’t be embarrassed of being in pictures or looking in the mirror. I should love my body for carrying me through every single day of my life thus far.

I can be healthy. We all have choices everyday and these choices lead us down a certain path. In believing that I am worth the struggle, worth the time and energy I will start working towards a healthy lifestyle.

This is my year and I can choose to be anything I want to be.

I choose to be healthy and you can choose to be too. You first need to find the mindset and make the choice.

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Photo by Johnson Wang on Unsplash

2019: First Quarter Goals

2019 Goals. New Years Resolutions. 2019 1st Quarter Goals

The time is finally here to start planning my goals for 2019. The past year flew by and I’m not sad to see it go. January always feels like a fresh start and this year I could really use a clean slate.

My goals for the first three months of 2019 are below and I encourage you to set goals for yourself too! I’ve said it before and I’ll say it again; setting quarterly goals instead of annual ones has been a game changer for me! I started setting quarterly goals at the end of 2017 and continued through all of 2018. I actually found myself looking back on my goals more often and completing them!

  1. Get a professional haircut. It’s incredibly sad that this is my first goal but the truth is that I HATE getting my hair cut. The whole process takes way too long and I’m rarely 100% satisfied with the results. I have super thick, wavy hair and most hairstylists don’t seem to know how to handle it. I like to joke that my hair is allergic to water because the second it gets wet it goes crazy and refuses to untangle. I have tried every product imaginable to tame the beast but I’ve summed it up to be #thickhairproblems. Do you have any hair products that you swear by?
  2. Travel at least twice. After our trip to Europe in October I was exhausted and traveling was the last thing I wanted to do. But Brett loves to travel and deep down I do too. I don’t want my love of adventures to be another thing my headaches take away from me. Brett and I want to take at least two small trips during Q1 including a trip to Florida to visit his Grandpa. The other trip will likely be a super spontaneous weekend trip so stayed tuned for the details!
  3. Commit to the blog. I have said this over and over before but have never stuck to it. I love blogging and in 2019 I want to focus more on doing the things that I love. Over the past 5 years the blogging community has embraced me and this has become my safe place away from everything else. I want 2019 to be the best year ever for Life of Hayley!
  4. Read three books and write reviews. One of the best things that 2018 brought me was my love of books. So far I have partially read two books that I am loving. I enjoy writing book reviews so hopefully I will find three books that I love to review!
  5. Meal plan and prep for the week ahead. I’ll admit that I haven’t cooked a real meal in a long time. My Crock pot and I became really good friends in 2018 because I had no energy or desire to cook. I’m kinda sick of the standard Crock pot meals though and am ready to start eating healthier and meal planning. Before our wedding in 2017 I was the Queen of meal prep. I’m hoping to at least get to Princess level in 2019.
  6. Make healthy living a top priority. I almost titled this goal as “making weight loss a priority” but then I re-evaluated my mind-set. This goal isn’t all about the number on the scale. I know that I need to lose weight but I also know my negative relationship with my body image. For me, the focus has to be on eating healthier and exercising and not the number on the scale.

In addition to setting quarterly goals I also wanted to choose a word to capture my goals for 2019. It took me longer than I care to admit to find a word that completely covers everything that I want to accomplish this year.

The word I picked is confidence.

Confidence in my ability to fight the demons that I am facing. Confidence in myself to be the best person that I can be. Confidence in my body as I look in the mirror everyday. Confidence as I stand in front of my co-workers with the knowledge that I can do my job well. Confidence that I am moving in the right direction.

Confidence in me.

What are your goals for 2019? Let me know below.

Thanks for reading!

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Migraine Update: New Neurologist & New Preventatives

Migraine Update - Chronic Migraines and Headaches - Trokendi XR

Hey friends!

After my last update about feeling discouraged in my migraine journey I have finally found a new source of hope, a new Neurologist! This Neurologist has his own practice separate from the hospitals. I can’t tell you how refreshing it is to be seen by a small practice instead of a hospital. I have seen this new Neurologist a couple of times now and he listens to what I have to say and is open to trying different treatment ideas when others fail. 

During my initial consultation I explained to him how frustrated and hopeless I was feeling because of my migraines and headaches. I always cry when I’m explaining how I’m feeling because I just feel so depressed about the situation. I think he could tell how desperate I was for a solution and started coming up with a treatment plan right away.

He prescribed Trokendi XR which is an extended release version of Topamax, an anti-seizure medication. I want to do a full post about my experiences on Trokendi at some point but the short and sweet version is that I spent the next six weeks or so pretty miserable. Trokendi can be a lifesaver for many people with migraines and I was really hoping that it would work for me. Unfortunately, it also has nasty side effects that left me feeling worse than normal. 

I went back yesterday afternoon to see my Neurologist to discuss Trokendi and my next steps. After explaining to him just one of the many side effects he immediately decided it was time to wean me off. I was so anxious to visit him yesterday because I so badly wanted to stop taking Trokendi but my old Neurologist would have wanted me to keep trying. This new Neurologist listened to how miserable I was feeling and decided to try something else. I honestly think my old Neurologist scared me away from doctors and now I have this fear of telling them how I feel. 

The new plan is to try a beta blocker and a round of steroids to break this headache cycle that I’ve had for almost a year. I also have to wean off of Trokendi too. I’m a little nervous to start the steroids but I’ve read that they can be miracle workers for people suffering from rebound headaches. 

I’m feeling hopeful because this new Neurologist is willing to try new things to lead me towards a pain free lifestyle. He listens to what I am saying and how I’m feeling and never rushes through my appointments. If I have questions I can always call his office between appointments and talk to him. It’s been a whirlwind to get here but I think I am at least headed it the right direction now. 

The hilarious part is that the other hospital in my area is finally willing to take me as a patient and has graciously booked me an appointment for January. I’m planning on cancelling. I think I need to be done with hospitals for awhile. 

What I’ve learned through this whole process is that sometimes you just have to learn to be your own advocate. I’ve been fighting for a pain free quality of life for eight years so far and I will continue to do so for as long as it takes. This journey isn’t easy and it will never be easy. It’s going to be painful, annoying, and depressing but the goal is to one day be able to travel and have a family with Brett. To me, that goal is worth it. 

Thanks so much for reading!

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Migraine Update: Feeling Discouraged

Migraine Update: Feeling Discouraged

It’s been over a month since my last migraine update and honestly not much has changed.

I saw my primary care doctor about 3 weeks ago and she referred me to a new neurologist at the other hospital in my town. There are two hospitals where I live and you either go to one or the other for everything health related not both. I have always gone to one but my doctor recommended that I try the other.

So, she sent the referral to my neurologist who had his medical assistant call me. Apparently, he can choose not to discharge me from his care if he feels that he can still help me. The MA asked me for the reason I wanted to change doctors and I was really honest with her. 1. I have been seeing him for over five years and we have only tried two treatment options and neither worked. 2. I want a second opinion.

The MA was supposed to call me back but that was over two weeks ago. I called yesterday for an update and he hasn’t even looked at my file yet. I tried to explain my frustration and pain but I really felt like it fell on deaf ears. To make matters worse, the new neurologist I wanted to see has switched to my current neurologist’s practice which will make the switch even harder. Apparently it’s rare that they will allow you to switch neurologists within the same practice and it sounds like that will be the case for me.

Yesterday I got off the phone and cried. It’s so discouraging to feel like you are headed in the right direction one second and then back at the beginning the next. This journey has not been easy and I’m sick of pretending like it has. I pretend everyday that things are okay and I feel fine. I don’t know how much longer I can keep doing all of the things I am doing. I try to put on this brave face but anytime someone asks me how I am feeling I fall apart.

Once again I am faced with a couple of options. The first is that I go back to my neurologist and try to talk him. I don’t think that this will be happening. The second is to find another neurologist at the other practice and see if he/she is accepting new patients. The third option is to finally make an appointment at the University of Michigan Neurosciences which I have been trying to avoid because of the distance and potential cost.

I have not had a headache free day at all in 2018 and that makes me angry. I’m not a neurologist and I have done everything that I can on my own to fix myself. I need a professional’s help and that professional will not be my current neurologist. I also suck at confrontation and am having a hard time advocating for myself. Hopefully if I do have to go back to my neurologist I can find a patient advocate to help me.

Anyway, that’s where I’m at with my journey to a pain-free life. It hasn’t been easy and I doubt it will be easy at any point. I am just hoping that somewhere down the line I can find a solution that will work for me. I’m trying not to give up hope. I am not currently taking any medication at all besides still overusing ibprofen in order to live a “normal” life.

Thanks for reading!

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Migraine Update: Decision Time & Leaving my Neurologist

Chronic Headaches and Migraine
Hey, friends!

I finally had a Neurologist appointment last week after being discharged from PT almost a month ago. I thought about writing this after my appointment but I just felt so discouraged that I cried in my car before forcing myself back to work.

Basically, my Neurologist didn’t even read my discharge papers and wanted to put me back on the same medicine I was on before. I put my foot down and told him no because I was on it for YEARS with very minimal results. He was in such a hurry to move onto his next appointment that he didn’t even listen to what I was saying. He prescribed an anti-seizure medication that is crazy expensive.

I am managing just fine right now without any medication. I still have a headache every single day and migraines a few times a month. I really want to try out acupuncture or a chiropractor before trying the prescribed medicine.

I think I have made a big decision though. I don’t want to see this Neurologist anymore. I don’t know if this means seeing another Neurologist or finding a headache specialist somewhere else. All I know is that I can’t justify spending $200 per visit to talk to a brick wall anymore.

My old physical therapist called me on Friday to recommend a book called Grain Brian which apparently goes into how gluten and sugar work with our brains. I ordered it on Amazon and am looking forward to reading it. I really do not want to give up Gluten though.

I want to spend some more time researching before I decide what my next steps should be. Here’s the list of what I am researching:

  • Acupuncture
  • Chiropractor
  • Elimination diet (gluten, dairy, etc)
  • Botox

Things I’ve already tried:

  • Massage Therapy (will do again)
  • Physical Therapy
  • Preventative/Abortive Medications
  • OTC Medications
  • Basic elimination diet (cheese, red wine, etc)
  • Trigger Identification

For now I am just taking it one day at a time and trying to remain positive 🙂 I think things will be much better once I ditch my current Neurologist and find someone who will actually listen and try to help me.

As always, thanks so much for all your support and feedback! I have loved reading your suggestions and have a running list of things to try based on blog comments.

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The Importance of Practicing Self-Care

The Importance of Practicing Self-Care
Hello, my friends!

I have spent the past few weekends learning how to practice self-care. I have never given myself enough time to truly focus on making myself happy. I am always in a rush and when I do have any down time I like to spend it reading or relaxing on the couch. Relaxing is important but I never felt better afterward.

In one of my last posts I talked about my weight gain. What I didn’t really mention were all of the negative things that I brought upon myself because of the weight gain. I hated the way that I looked and the way my clothes fit. I thought punishing myself by squeezing into my old clothes would motivate me to lose weight. Instead I just felt terrible all of the time. My confidence, especially at work, was at an all time low.

A couple of weekends ago I finally had had enough. My mom, sister, and I drove to the outlet mall and I bought all new work pants and jeans. I had no idea how much of an impact those purchases would have on my self esteem. It felt good to not look like I was squished into my pants. I wouldn’t say I felt confident but I did feel better.

The next weekend I decided to spend an hour getting my haircut and eyebrows waxed. It felt so good. I have such thick hair and it grows at such a fast pace. I usually only get my haircut every six months but it was making me unhappy so I decided to change it. You still won’t catch me styling it in any way but at least I can brush it!

Spending a little time on self care is SO important and I am just now realizing that. I have never ever made the time to put myself first. I deserve to be happy and shouldn’t punish myself for the fact that I’ve gained weight.

Do you have any tips for practicing self-care? I’d love to hear them!

 

Lifestyle Blog, Life of Hayley

 

Photo by Tim Goedhart on Unsplash

2018: Second Quarter Goals

2018 Second Quarter Goals
Hello there!

I didn’t think this post was going to happen but here we are. What’s new with you? Are you crushing your 2018 goals?

I am back with another quarterly goal list and I just wanted to mention how first quarter went for me.

The first three months of 2018 went by so quickly. January was a blur of excitement, anxiety, and many, many tears. February featured the birth of my co-worker’s baby which means three months of maternity leave for her. In other words, I am swamped at work but thriving. I am learning every day and my team is simply amazing. March feels like it didn’t even happen. March meant long hours, lots of meals at my desk, and an overflowing calendar. In other words, tax season. It’s been a rough three months but I am grateful every day for the opportunities that have been thrown my way.

We are almost one month down for the first quarter. I still can’t believe how fast this year is going! Can time just please slow down a bit?!

So, here are a few of the things I am hoping to accomplish during what is left of the second quarter.

  1. Create healthy habits. What does a healthy lifestyle look like for me? I am still trying to figure this out but I will not stop until I have the answers that I am looking for. I don’t like what I see in the mirror and I am going to change that. Baby steps are needed but little by little I will get to where I want to be.
  2. Family First. My grandparents are back from Arizona which means that summer is right around the corner. I want to spend as much time as I can with my family. I want to go camping, spend days at the lake, and just enjoy as much time as I can with the people that I love most.
  3. Make our house a home. If you didn’t read my last post, Brett and I bought a house and moved in last month! We are so excited to decorate and really turn this house into our own home. We have dreamed of this for so long and still can’t believe that this is our reality. This is the beginning of another chapter in our story.
  4. Me Time. I find myself putting other people first a lot of the time. I often forget to take care of myself. I want to find time to do things that help myself like get a haircut and buy some clothes that will flatter my new, curvier figure. I have spent so much time the last couple of months being really negative about my body so I need to spend some time on making myself better from the inside out.
  5. Blogging. Is this still a thing? Does Life of Hayley even exist or matter? It’s time to figure it out. Maybe I will never be full time writer or have the most pin worthy posts but sharing pieces of my story impacts my life is a positive way. I need to figure out a way to make this blog work. Any suggestions would be greatly appreciated! 🙂
  6. Get my head in the game. A huge thing that is holding me back is my health. I mentioned in a recent post that my headaches and migraines have been getting worse. It’s miserable. I have an appointment with my neurologist in mid May. I am hoping to discuss some next steps with him that could improve my quality of life. Right now I feel like I am just trying to make it through each day in one piece.

Wow, I had a lot to say. I sometimes forget how much I love having an outlet for all of these thoughts that usually just bounce around in my head.

I would love to hear from you so please comment below with questions, words of encouragement, or just a simple “hello”. I love to hear from you.

As always, thank you so much for reading. Hopefully I will be back soon with more. 🙂

 

Lifestyle Blog, Life of Hayley