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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My Acne Journey Over the Last 15 Years

Acne Journey; How to get rid of acne; acne diet; clear skin diet; teenage acne; best acne products

Last month I was hit with a major breakout all over my neck, chin, and face. I haven’t had a major breakout in over a year but have lived with severe acne since I was about 10 years old. I’m 25 now and not sure if I’ll ever have truly clear skin.

For years I let myself be defined by my acne. I didn’t want anyone to look at me during a breakout. I didn’t want my picture taken and I really just wanted to be alone. For me, having acne was like a prison sentence with no end date because I felt trapped in my skin that didn’t look like everyone else’s.

This is one of the things I never thought I would be sharing on the internet but this current breakout threw me and made me really grateful for how much my skin has changed in the past couple of years. While I was reminiscing on my acne journey I thought it would be important to share my acne story because I know there are other people out there who share my struggle.

Have you ever had a severe acne breakout? I’m talking volcanic pimples that seem to go all the way down into your core? The kind that make your face hurt when you aren’t even touching them? Well, that was my life for many years.

I first started breaking out when I was 10. I clearly remember this time in my life because it was right around then when I needed to change friend groups because my old “friends” started to bully me over my acne. Since my birthday is in October I was always one of the oldest kids in my grade and my body started changing way before my peers. I’m pretty sure I was the first kid in my grade to get acne and at the time I felt so self conscious and confused about what was happening to my face.

Middle school was the lowest of the low for me. I was bullied constantly and desperately wanted to disappear. I call this phase of my acne a “mountain range” because I had cystic acne. My face was red and bumpy always and I had zero self esteem because of it. Middle schoolers are ruthless and it was a really hard time for me.

We didn’t have a lot of money growing up but my mom tried anything and everything to help me clear my skin. I had the nicest skincare products of anyone I knew. I remember one Saturday where my mom took me to the skincare counter at Macy’s. I cried when the skincare consult started talking about my skin because I was mortified. I left that day with a Clinque starter kit that helped me manage the redness.

High school was a series of ups and downs. I started to discover makeup which helped me cover up my acne scars and current breakouts. My skin was still covered in pimples but the makeup gave me the tiniest bit of confidence which helped carry me threw to graduation. High school bullies were endless but I was able to mostly ignore them.

In college my face was always covered in acne but it wasn’t as bad. I was always trying new things to clear my skin like avoiding dairy and eating lots of leafy greens. College is also the time in my life where I developed my go-to skincare routine.

When I was 22 and graduated from college my skin really started to clear up. I attribute a lot of that to starting a new job. I had worked in “fast food” for six years which usually made me sweaty and greasy. My post-grad job got me away from the restaurant lifestyle and I had way less day-to-day stress.

So here we are at age 25. I still have breakouts but they usually aren’t severe. That’s why my last breakout freaked me out so much. I was worried that my acne was going to be terrible again. Murad has been my go-to for acne products for years so I ordered their starter kit right away and my acne cleared up in less than a week.

Acne is hard. It’s different for everyone and can be incredibly frustrating. However, my acne journey made me a stronger person. It taught me that what’s on the inside counts way more than what’s on the outside. I believe that a lot of people have judged me during my life because of my acne and that is their loss.

My acne journey doesn’t define me. Your’s doesn’t define you either.

Do you also struggle with acne? Or know someone who has?

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What Are The Sunday Scaries?

What are the sunday scaries?

I love Saturdays but Sundays tend to be the most stressful day of the week for me. I try to relax Saturday and then cram way too many activities into Sunday. I hate starting my week off on a bad foot so I do everything that I possibly can on Sunday to prepare myself for the busy week ahead. This includes grocery shopping, deep cleaning, changing the bedding, and doing ALL the laundry. I also like to have Sunday night dinner with my family which means about an hour of driving added in.

I don’t know about you but nothing stresses me out more than a dirty house. My house is never 100% clean and most of the time it’s pure chaos. I love to re-organize our bedroom and closets which means that I usually have a few random piles throughout the house that need to be cleaned up. Our dog Oscar also likes to de-fluff all of his toys so we have tufts of stuffing floating about the house.

I saw the term “Sunday Scaries” somewhere on social media and I finally had a phrase for my Sunday stress. It seems like I’m not the only one who finds Sundays to be overwhelming and emotional. I love my job but I’m never quite ready to go back Monday morning and it’s even harder if I don’t get all my chores done on Sunday.

Keeping a clean house with a husband, dog, and cat is not easy. I know it will be even harder to maintain when we have kids so I’m trying to enjoy this time in our life where it’s just us. I dream of an organized, beautifully decorated house.

Do Sundays stress you out too?

Lifestyle Blog, Life of Hayley

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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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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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Recharging the “Introvert Battery”

Introvert Recharge

Happy Friday!

I don’t know about you but I am exhausted! I have been going nonstop lately and I am in desperate need of a break.

“What’s an introvert battery?” you ask. Great question! I don’t know if this a real term but it’s something I use to explain how I feel. If I know I’m going to be in social situations I spend some time alone to recharge my “battery” before needing to talk and interact with people. After I’m done interacting I go home and sit to recharge myself for the next outing. Being social takes all of my energy sometimes.

I’ve talked many times about being an introvert and one of my most prominent introvert tendencies is the need for alone time. I have had very little alone time as of late and need to recharge my battery. By recharge I mean not be around people for awhile.

I hate being “on” all of the time and I need to switch myself “off” for a while. I’ve been a little quiet on the blog lately just because I feel so overwhelmed right now. It’s so hard to explain this to people who don’t experience the same feelings of anxiety towards social situations. Brett tries really hard to understand but he loves being around people so he struggles to realize that I can’t do as much as he can.

Sometimes I wish I could have a personality transfer because these periods of my life suck. It makes me feel selfish and ungrateful when I have to say no to friends and family that want to see me. But if I don’t recharge soon I will crash. I’ve crashed a few times before and it’s not fun and I end up feeling guilty about it for days. Our wedding day took a full introvert battery and I crashed at the end of the night because I was so overwhelmed and exhausted.

Do you ever feel this way too?

Thanks for reading!

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