How I Manage Working with Migraines

working with chronic migraine

One of the most popular questions that I get about having chronic migraine is how I manage to hold down a full time job. In honor of Migraine and Headache Awareness Month I thought I’d share a few ways I have learned to manage working with migraines.

I have been working consistently since I was 17, so almost 10 years. I worked all the way through college, excluding the few months that I studied abroad in London. After my college graduation I found my current role and have worked here for almost 4 years.

Working isn’t easy and I’ve really struggled to balance everything. 2018 was my worst year by far and I really considered taking FMLA. However, I am very fortunate to work at a company with unlimited sick days. They truly care about me as a person but I never want to take advantage of their generous sick leave policy.

Here are a couple of ways that I manage working with migraines.

  1. Open communication. My co-workers know that I have migraines. They have asked me questions and we have discussed them at length. Having them know makes me feel a million times better because they can tell just by looking at me if I’m having a rough day. It’s easy to talk about and I don’t feel overwhelmed trying to act “normal”.
  2. Working from home. Again, I am extremely lucky to work for a company that values me and my individual needs. I am able to work from home whenever I need to. Sometimes the biggest trigger for me is just waking up. I wake up and feel like I’ve been run over by a bus and there’s no way I can drive to work. I always have the option to work from home and take the day at my own pace.
  3. Taking frequent breaks. I work at a computer all day and even with blue light glasses my eyes get fatigued which causes me to have a headache. I make sure to take frequent breaks to re-fill my water, talk to a co-worker, or walk around the building. Working from home is nice because I can walk outside and sit on my deck or snuggle with my puppy for a few minutes. Taking breaks is super important for everyone!
  4. Planning ahead. I am always ready for a migraine. I have all of the essentials at home, in my purse, in my car, and at my desk. It depends on the level of migraine I’m having but sometimes I am able to work through them if I catch them soon enough. My migraine essentials include electrolyte water, caffeine, magnesium, and an abortive medication if needed.
  5. Sick days. As I mentioned, my company has unlimited sick days and while I never want to take advantage of those day I still appreciate them. My mindset on sick days is that I’m going to have a migraine no matter what. It’s not going to go away and I’m not going to get “better”. If I can work through my migraine I will but sometimes I really do just need to lay in bed all day with my ice cap on. These are the days I will take a sick day and just focus on myself. I appreciate these unlimited sick days more than anything.

I know that I am extremely lucky to have the job that I have. I work hard and put a lot of pressure on myself but I always know that my team has my back with whatever I need. I have heard so many horror stories from the migraine support group that I’m part of where people have lost their jobs or have had to go on disability because of their migraines.

It is hard to balance everything and there’s no right or easy way to balance work with any type of health condition. I have had my fair share of struggles and an embarrassing amount of tears while surrounded by co-workers. At one point I thought I’d have to quit because there was no way I’d be able to face them again but I did.

If you are struggling just know that you are not alone.

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Photo by Corinne Kutz on Unsplash

 

Migraine Update: Rebound Headaches & Caffeine

Chronic Migraine

It’s been a couple of months since my last migraine update where I decided not to try Amiovig and instead work on diet and lifestyle changes. The past couple of months have been weird for everyone but it’s given me plenty of time to work on my next plan of attack for my migraines.

In honor of National Migraine and Headache Awareness month, I thought I’d share another update.

Since I’m at home with nothing better to do, I decided it’s the perfect time to wean myself off of my abortive medicines. I’ve been in an endless cycle of rebound headaches for the last few years and this was the perfect time to break the cycle. This has meant days of extreme pain but I know it’ll be better for me in the long-run.

I have also been experimenting with my caffeine and magnesium intakes. I don’t drink coffee so my caffeine intake is typically zero but I’ve started drinking Sparkling Ice + Caffeine waters which have 70 mg of caffeine per can. I do think it helps, especially if I drink one during lunch which is typically when I start to get another headache. I also take at least 250 mg of magnesium a day. I take mine at night and I’m planning on gradually increasing my intake as needed.

I’ve also weaned myself off of the Keto diet. I really did like it and do think that it helps my migraines. I want to go back to a full Ketogenic lifestyle soon! I was just having a hard time staying on track during quarantine. We are only going grocery shopping every 2-3 weeks so it was hard to maintain eating only fresh veggies and meat. We also had a hard time finding eggs which was a staple for me!

The biggest change for me has been working from home everyday. Not going into work has helped my pain so much. I think the stress of driving and being “on” all the time didn’t help with my headaches and migraines. Being home is so much more relaxing and I’m able to rest when I need to without feeling like a failure.

Brett and I have talked about trying to start a family in the next couple of years and I know that I have to take better care of myself if I have any hopes of being able to have a baby. I can’t be in constant pain and be taking so much medicine. That’s been my main motivation because I know it will take time.

I have a couple of other migraine related posts for this month. There is so much going on in the world right now. So much that it almost feels wrong to continue sharing my journey. I know that this is also important though. I know there are millions of others struggling everyday with headaches and migraines.

Thanks for reading!

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Photo by Emma Simpson on Unsplash

 

Migraine & Headache Awareness Month

National Headache and Migraine Month

June is National Migraine & Headache Awareness month.

In June, the migraine and headache communities come together to raise awareness and recognition of migraines and headaches as debilitating diseases. June is also a time to encourage people suffering in silence to find a specialist or a doctor to help them. It’s a month to talk about current treatment options and new ones that are being created. It’s a time to celebrate how far the community has come in the past few years.

One of the hardest parts about having chronic migraines is feeling alone and misunderstood. I really struggled trying to fit in while being in constant pain until I found the migraine community. Now I feel like I have people in my life who understand how I’m feeling and who I can turn to with questions.

I wrote about my migraine story in 2018 and a lot has changed since then. The biggest thing that has changed is that I learned to advocate for myself. Instead of staying with a neurologist who pushed the same medication over and over I found a new neurologist who actually listens to me. I have so many more treatment options and I feel like a whole new world has been opened up to me.

I have put so many medications and treatments into my body in hopes of treating my migraines. I have had horrific side effects and have been sick for months because of these medications. I’ve gained weight, lost weight, and felt really crummy. I’ve tried diets, physical therapy, and different doctors. There is no cure but there is always hope. 

I’ll be talking about migraines and headaches a lot this month. I never expected to find a migraine community through blogging but I have. Blogging about my migraine journey has been really beneficial for me and I hope I’ve been able to help others know that they are not alone in this.

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Photo by Volodymyr Hryshchenko on Unsplash

 

 

 

 

Migraine Update: Steroids & Trying Aimovig?

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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.

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Photo by Yuris Alhumaydy 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?

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Image via American Migraine Foundation

 

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

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!

Photo by rawpixel on Unsplash

Life Update

Life Update - You Got This - Chronic Migraine

Hey friends!

It’s been awhile since my last blog post and I have started writing this so many times but have never hit publish for one reason or another. The last you heard from me I was in Italy with Brett enjoying a much needed vacation. I want to do a full recap on our time in Italy AND Paris very soon because it was amazing but first I wanted to go over a couple of things that I have happened while I’ve been away.

The first big thing that I celebrated was my 25th birthday! My birthday always causes me to reflect on the reason why I started Life of Hayley. This blog began right after my 20th birthday as a way to document the 25 things I wanted to accomplish before turning 25. With that said, Life of Hayley is turning five! I can’t believe that I’ve been blogging for five years already! A full recap on my five years of blogging will be coming your way very soon.

I also want to give a quick health update which is the main reason why I had to take a break from blogging. I did start seeing a new Neurologist in October and he started me on a new medication. I will probably do a full migraine update at some point but let’s just say this new medication say not agreed with me at all. I’ve been very sick for the past six weeks and it’s been taking a toll on my mental health. I hate that my health has once again impacted my blogging because I was really starting to grow this space but sometimes I have to take a step back and take care of myself first.

I promise that there will be more to follow soon. I don’t want to drop off the face of the planet again.

Thanks for reading!

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Image via Unsplash

Five On Friday #4

Five Things on Friday

Happy Friday, friends!

Once again, I thought I’d share five things that have been on my mind this week. It has been an exhausting week between an aggressive headache and lots of responsibilities at work. Let’s just say that I am very excited for this weekend and my vacation next weekend. This is my first real vacation this year besides air shows and weddings so I’m super excited to relax a bit!

  1. October 2nd marked one year since Tom Petty passed away. Tom Petty was one of my absolute favorite artists and his death devastated the entire music industry. I celebrated his life all week long by listening to a Tom Petty playlist on repeat.
  2. This weekend we will be attending my cousin’s wedding! I have never been more excited for someone to get married (besides me, of course). They have been dating for 11 years and I’m looking forward to celebrating with them!
  3. Brett and I are getting ready for our long awaited European adventure next week! We are flying stand-by so I’m not exactly sure where we will end up but hopefully it will be Rome! If you want to see more about our trip make sure to follow me on Instagram (@lifeofhayleyblog). I am hoping to post there pretty regularly!
  4. My headaches seem to be immune to any sort of pain medication now. I am on day 10 of constant pain and all I want to do is sleep for the next one hundred years.
  5. I despise jeans but have been loving Old Navy’s jeans lately. I bought three pairs in the last couple of weeks and have been living in them. I prefer jeans that are super stretchy and comfortable and they have a lot of variety.

Also, a huge thank you to my friend Hunida for featuring me in her blog post yesterday! I always love reading her monthly favorite blog posts and was super surprised to see my blog featured! Thanks again!

Well, that’s all of this week! What’s on your mind today?

Thanks for reading!

Lifestyle Blog, Life of Hayley