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

Five on Friday #13

matthew-t-rader-9aUG99x8LY4-unsplash

Welcome to Friday, friends! 🙂

This week was okay. I had Monday off to go to South Haven with Brett so I only had to work four days. A four day work week seems so much more enjoyable than five days. How was your week?

  1. Our local balloon festival is this weekend so Brett will be busy with that. I will be joining him for most of it but I’m also hoping to squeeze in some time to get chores done and spend time with family.
  2. Brett and I went to dinner on Tuesday night with my grandparents and parents. My parents are celebrating 27 years of marriage this month! I cherish all the time I can get with my grandma and grandpa.
  3. I’ve been in a reading rut lately. I’ve started a couple of books but nothing has stuck which is super disappointing. Have you read any good books lately?
  4. I’m starting to get sad that summer is almost over. I’m happiest when the sun is shining and I can spend all the time I want outside. I love fall but it’s too close to winter. I am pretty excited to switch up my home decor and drink some hot apple cider though! Are you ready for fall?
  5. I was doing really good with my health and wellness journey but I’ve fallen off the wagon a bit these last couple of weeks. I’m determined to re-group this upcoming week and get back on track! I’m planning on doing some serious meal prep on Sunday to get me ready for the week.

What are your plans for this weekend?

Footer

Photo by Matthew T Rader on Unsplash

Learning How to Say “No”

dawid-zawila-zb2vBaHYB2I-unsplash.jpg

I’m a people pleaser and that’s not always a good thing. I hate disappointing people and nothing brings me more joy than helping someone in need. This people pleasing quality gets me in trouble a lot of the time because I make other people happy but don’t have time to chase my own happiness.

I’ve been struggling lately with this because sometimes people take advantage of how caring I am. I get myself in situations where I’m so busy taking care of other people that I don’t take care of myself. I end up exhausted, crying, and swearing that I’ll make a change and start saying “no”.

This weekend we had a family member ask me to do something for her and her family that went way too far. I want to help them but helping them would hurt my mental health in a way that would take too long to recover from. I don’t want to go into details but I had to have a serious conversation with Brett and luckily we both agreed that I had to say no.

Saying no is hard, especially when you love the person and want to help them. But sometimes you have to say no in order to protect yourself from damage. It feels selfish and wrong but it’s needed. I hate disappointing people and I know that this decision will hurt my relationship with the person. But this time I have to put myself first. I have to save myself from something that will damage me.

Taking care of yourself is more than just “self-care Sunday”. Taking care of yourself means protecting your mental health, your energy, and your well-being. It means learning to say “no” to things that will hurt you. Put yourself first, you’re worth it!

Do you have a hard time saying no to people? Any advice on getting over being a people pleaser?

Footer

Photo by Dawid Zawiła on Unsplash

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

 

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?

Footer

Photo by Robbin Huang 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