Migraine Update: Steroids & Trying Aimovig?

yuris-alhumaydy-mSXMHkgRs8s-unsplash.jpg

I had an appointment with my neurologist in September and was surprised with how helpful he was. Is it bad that I’m still so surprised to receive good medical advice? After having a terrible neurologist for years I’m so happy to have found a good one!

We started our appointment by talking about my migraines and how we haven’t been able to find anything to break the cycle. I was on day 8 of a migraine when I saw him and I’ve had constant head pain since December 2017. Late last year he had me do a round of steroids to try to break the cycle and I had mild success. We decided to try another round of steroids to see if they would help.

I had a couple of good days on the steroids where I didn’t need to take anything for the pain. I still had a headache but it was more mild than normal. Unfortunately, as I weaned off of the steroids my headaches came back full force and I ended up with another migraine week. I’ve had to take a couple sick days or leave early in the past few weeks because the pain has been unbearable.

My neurologist also upped the dosage of my preventive medication that I’ve been on for 9 months or so. I’m really hoping this helps!

We ended my appointment with talking about Amiovig which is an injectable migraine medication that was released in 2018. I’ve done a ton of research on Amiovig and am unsure if I’m willing to try it. I could experience some serious side effects and I’m deathly afraid of needles so I’m not sure how I’d handle giving myself a monthly injection. I’m still weighing the pros and cons but am excited that he’s willing to try something new! Have you tried Amiovig?

I’m feeling pretty hopeful after this last appointment. I just have to keep advocating for myself and fighting for a pain-free existence.

Footer

Photo by Yuris Alhumaydy on Unsplash

Advertisements

Five on Friday #11

link-hoang-31747-unsplash.jpg

Hooray! We made it to Friday! This was my first week back to work after vacation and I’m exhausted.

  1. Fourth of July is next weeks which means that it’s our biggest airshow week of the season. I’m exhausted just thinking about it! The fourth was always my favorite growing up because both sides of my family would get together to celebrate America and my sister’s birthdays. I loved having everyone together at the lake.
  2. We went to Oregon last week on vacation with my friend, Anna Sophie, and her boyfriend. You might remember her from my study abroad posts. We hadn’t seen each other since leaving London in 2015 so it was so nice to catch up! I’m hoping to write a whole post about our trip soon.
  3. Before vacation I was really motivated on my health and fitness journey. My goal is to not only lose weight but to accept my body at every stage along the way. I’ve spent the past couple of years being really terrible to myself with the way I talk about and treat my body and I know that needs to stop. Body image is a huge issue in our current culture and I’ve really had to step back from social media in order to get my head back in a good place.
  4. Going on vacation has really made me realize that I need to spend more time away from work. My work-life balance has gotten much better since last year but I still worry and think about work way too much. I need to step back every once in a while and just worry about me.
  5. I had a neurologist appointment on Monday afternoon and I’m thinking about doing a Migraine update post to share what’s been going on. I haven’t done an update post in awhile because there hasn’t been any updates.

Do you have any plans for this weekend?

Footer

Photo by Link Hoang on Unsplash

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?

Footer

Image via American Migraine Foundation

 

Five on Friday #10

ben-white-124298-unsplash.jpg

TGIF! It’s been a longggg week and now I’m going to have a busy weekend. Here’s to hoping I’m able to sleep in past 7:30 Saturday morning!

  1. The first airshow of my season (Brett’s already been to a couple) is this weekend. I don’t enjoy airshows that much but Brett loves them and it gives me a chance to do a ton of reading!
  2. Brett and I got a couples massage on Tuesday after work and it was really nice! He got me a gift certificate for Valentine’s Day and we finally found time to use it. The massage was at a castle that is right outside of our downtown area. We’ve had dinner their a couple of times and I went to a bridal show that they hosted but the massage was a new experience. It was really nice!
  3. It’s been a dream of mine since I was really young to write a book. I’ve been bouncing around this idea in my head for the last couple of years and I’m finally getting to work. I don’t think anything will come from it but it’s still fun to brainstorm.
  4. Every summer my city has an art fair downtown in the park across the street from where I work. The art fair starts today and I can’t wait to explore during lunch with my co-workers. My mom is meeting me downtown after work to walk around too. It’s great to be able to support local artists and businesses!
  5. June is National Migraine and Headache Awareness Month (MHAM). This month is special to me because I often feel isolated because of my migraines. During the month of June thousands of migraine patients come together to spread awareness for their disabling conditions. I’m planning to do a post about it soon because I’m passionate about advocating for my self and for others who also suffer.

Do you have any plans this weekend?

Footer

Photo by Ben White on Unsplash

 

 

6 Migraine Essentials

Migraine Essentials

I never thought that I would be blogging about my migraines.  I started getting them when I was young and I felt really alone in my struggle but since I started blogging I’ve found so many who can relate to my story. I hate that there are so many men and women struggling with migraines but it does help me to know that I’m not alone and there are a few things that can help.

Over the years I have come up with a list of essentials that I use when I have a migraine or in order to prevent migraines. My number one tip is to always stay hydrated. Everyone has their own migraines triggers but dehydration seems to be a very common one. I drink a ton of water everyday in order to make sure that I am hydrated. Being hydrated is the number one rule for me for my migraine prevention.

Here are six essentials that I have found work for me when I have a migraine.

  1. Headache Hat – This is basically an ice pack that wraps around your head and has velcro straps so that you can adjust the pressure. Basically it’s the best invention ever. You can buy one on Amazon for $40 and it’s worth every penny. I am also known to tie ice packs around my head with a scarf. It’s not the best look but it works!
  2. Electrolyte water or supplement – Like I said, hydration is key. But when I get a migraine I don’t want to do anything and that includes drinking water. I always keep a big bottle of electrolyte water in the fridge along with a Gatorade so that I can quickly hydrate during a migraine. You can also buy electrolyte packets to add to normal water.
  3. Blackout curtains – I am very sensitive to light on a normal day to day basis. When I have a migraine my sensitivity is even worse. We have blackout curtains in our bedroom so that no matter what time of day it is I can curl up in bed and try to rest. I also sleep on the couch in the basement when I’m in a lot of pain because it’s dark, cold, comfy, and quiet.
  4. Caffeine – This is a tricky one and can kind of work differently for everyone. I don’t drink coffee and the tea I do drink has very little caffeine. When I have a migraine I like to grab a coke/pepsi for a quick dose of caffeine. I have found the Excedrin Migraine doesn’t work for me and this method does.
  5. Ice roller – My neck tends to get really stiff during a migraine. I had physical therapy for my migraines so I know a few stretches that can help. But what helps more is having this ice roller ready to go in the freezer to roll over my neck and forehead. It feels so nice!
  6. Comfy Clothes – This sounds ridiculous but when I have a migraine I am looking for something to provide comfort. Putting on my favorite pair of pajamas or sweatpants automatically makes me feel better. Comfy clothes don’t make the pain go away but they make it feel more bearable than being in pain and wearing jeans, for example.

What are your migraine essentials?

Footer

Photo by Annie Spratt on Unsplash

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?

Footer

 

 

 

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!

Footer

Image via Unsplash