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

 

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Five on Friday #10

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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?

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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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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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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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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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