Tag: migraine

2021 Migraine and Headache Awareness Month

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June is National Migraine & Headache Awareness month. I’ve been pretty quiet this year in regards to advocating and sharing my experience but I didn’t want the month to pass without me mentioning anything. You can read my story about my migraine and headache experience here for background.

One of the biggest challenges I’ve had with having chronic migraine is suffering in silence. I look pretty normal from the outside so having an invisible illness is hard to explain and advocate for. It’s been even harder now that I’ve entered corporate America and I feel like it’s a major roadblock for my career. My team is super understanding but I hate talking about it and feel bad that I have different needs than the rest of the team.

I try to advocate and raise awareness for those suffering in silence or with invisible illnesses as often as possible but June is always a good reminder to say something. The migraine community is greater than I imagined it would be. I never knew that there were so many resources available and I was even able to find a new Neurologist because of these resources. If you are suffering in silence, please know that you are not alone and there may be resources available to help you too!

I’ve tried many different medications and treatments but over the past 15 months I’ve focused on my health and prioritized putting myself first. This was only possible because I was working from home. I never imagined that what would help me the most was simply being at home in a controlled environment.

I’ve learned a lot about migraine and headaches over the past few years and finally feel like I’m in a better place. With the U.S. opening back up after the pandemic I just hope that I’m able to stay in a good place. I don’t know how I’ll feel going back into the office but I hope it doesn’t ruin 15 months of actual progress.

Photo by Carolina Heza on Unsplash

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Migraine Update: Rebound Headaches & Weaning Off Meds

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I haven’t done a migraine update since July and SO much has changed since then. I’ve worked really hard the past six months or so on my health. Being in a vicious migraine cycle for the past 7+ years was a nightmare and I knew that something needed to change. I couldn’t continue being in constant pain everyday.

Before I continue, please read my migraine story and know that my journey will be different than yours if you also have headaches or migraine. I should write an updated migraine story since I wrote that one in 2018 but I have done many migraine updates since. It took me years to find a Neurologist that worked with me and understood me. My story would be much different if I hadn’t found my current Neurologist.

Muscle Relaxers

In July I wrote about taking muscle relaxers at night to help me sleep and lessen the tension in my neck and jaw. I was very skeptical when my Neurologist suggested muscle relaxers but I’ve been pleasantly surprised! I only take them on the weekends because I do sleep almost too well and have a hard time waking up on workdays. But I do notice a huge difference when I take them and it really has helped me.

Rebound Headaches

How many times have I mentioned rebound headaches now? For years I lived off of ibuprofen because I was in constant pain and it was the only thing that made the pain manageable. Taking all that ibuprofen was not only extremely unhealthy but also put me in an endless rebound headache cycle.

I made it a goal this summer to break my rebound headache cycle which meant weaning off of ibuprofen and any other pain medication that I was relying on. It’s almost like an addiction and I didn’t think that I’d be able to get through it. It’s been about 4 months since this journey began and I’m happy to say that I’ve only taken pain medication a handful of times per month since. I still can’t get through a bad migraine without rescue meds but I don’t take anything daily for pain.

I should mention that weaning off of pain medication was very painful. I had about a month of severe pain and basically withdrawal symptoms. I’m still in awe of myself that I was able to break the cycle. I still have daily headaches and migraine cycles a few times a month that last days but I know my overall health is much better now.

Weaning Off Medication

I’ve always wanted kids but it’s felt impossible because I was in constant pain and relied of medication to keep me going. Over the past few months I’ve finally felt like I might be able to start a family which is a huge deal for me. I’ve watched friends and family members start their families while knowing that I might never be able to have that same experience. Now I feel like it’s a possibility.

Because of that, I made the decision with my Neurologist to wean off of my daily preventative medication. These meds were also controlling my tremor so weaning off them meant that my tremor would come back full force. It took about a month for me to completely wean off of them and I really noticed a difference right away. I have a constant headache, tremor, and an increase in migraine days.

It won’t be easy but I hope that weaning off of this medication will be okay. It’s only been a couple of weeks now so it’s hard for me to say. I hope that one day soon I feel comfortable and confident in deciding to start a family. The thought of being pregnant still terrifies me but I hope it’ll be worth it!

So much has changed in the past several months and I feel like I have a lot to be proud of. My journey with Chronic Migraine hasn’t been easy but I’ve learned a lot.

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Migraine Update // Muscle Relaxers & Anxiety

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Last month I went to my Neurologist appointment not really knowing what to expect. I wanted something to change but I wasn’t sure what to do.

It was extremely weird going into the appointment since I had to fill out extra forms and be temperature checked at the door. I wore my mask the whole time and felt safe but it was a much different environment than I’m used to.

Overall the appointment was really good. I do like my Neurologist and feel like he listens to my concerns and answers my list of questions that I always bring with me. He isn’t pushy and I really appreciate that since I had such a bad experience with my previous Neurologist.

We decided to take a bit of a different route this time around and try a muscle relaxer in addition to my normal preventative medication. The muscle relaxer is supposed to help relieve tension and can be especially helpful for people suffering from tension headaches. I had never considered taking a muscle relaxer for my migraines but my Neurologist was really informative and I decided to try them.

It’s been about a month and I have mixed feelings. I sleep so well when I take the muscle relaxer at night but I almost sleep too well. I feel like I’m in a coma and just pass out and then have a hard time waking up with my alarm. I also feel pretty groggy the next morning which isn’t great for working.

Lack of sleep is a huge trigger for my migraines though so sleeping this well is also great. I get more sleep than I used to when I take them. I haven’t really noticed a decrease in migraines but I think it is a little helpful to take the muscle relaxer.

I’ve also had an increase in anxiety over the last month. I have a small tremor in my hands that I take medicine for. I was so stressed out and anxious last week that my small tremor turned into a full blown episode where I was shaking so bad I couldn’t hold a drink. My mom thinks this was brought on by stress and I took a video to show my Neurologist at my next appointment.

Since my increased tremor last week, which thankfully lessened after a few hours of rest, I have been trying to take it super easy. My body obviously isn’t responding well to stress and I need to keep that in mind and stop pushing myself so hard.

I also had a level 10 migraine last weekend. I haven’t had one that bad in so long and I barely made the car ride home from my sister in law’s house. I laid on the bathroom floor for awhile before Brett helped me to bed. I think the trigger was a small glass of wine that my SIL gave me. I know I shouldn’t drink wine but I thought it wouldn’t hurt me that much.

I have a lot of notes for my next Neurologist appointment but I still feel hopeful. I have the option to do the Amiovig injections so that might just be my next path.

There’s a lot of trial and error when it comes to finding the right treatment plan for migraines. I try to open to trying new things and I just remain hopeful that one day something will work!

As always, if you are suffering from migraines just know that you are not alone. There are millions of people suffering in America alone and I’m just trying to share my story and advocate.

Thanks for reading!

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Migraine Update: Rebound Headaches & Caffeine

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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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Migraine Update: Keto Diet & Positive Thinking

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My migraines and headaches have progressively gotten worse over the past couple of years but I have gotten stronger. It’s easy to let my fear of a migraine or my day-to-day pain bring me down but I’ve decided that I am stronger than my migraines and I deserve to live a life worth living.

There is no cure for migraines. There’s no easy way out. I haven’t been able to find a medication that will magically take all of my pain away and leave me symptom free. Instead I have decide that I am mentally strong enough to withstand the pain. There are still many days where I don’t want to get out of bed and sleeping is the only thing that helps. And that’s okay.

I had an appointment with my neurologist last week and I was a bit disappointed at first. It’s easy to feel like all of my doctors have given up on me when they can’t find a way to help my migraines. In this case, I think my neurologist was trying to push me to make a decision that I wasn’t ready to make at the time. He wanted me to make the decision on how much I’m willing to put my body through in order to be pain free. He wasn’t doing this to be hurtful but wanted to have an honest conversation with me. He’s a good guy and a great doctor.

I needed to take a step back. We talked about Amiovig at my last appointment and I had been thinking about it since. I hadn’t decided if I was ready to make that leap. So instead I decided to take some time to take care of myself for once. I’ve had a little success with my current medication so I’ll keep taking it. I’ve had a lot of success with eating a low-carb, low-sugar diet so I’ll try that again.

This is my third time doing the Ketogenic diet. I know that tons of people say that it’s not healthy but both of my neurologists have suggested it to me. According to them, Keto was originally created to help people with Epilepsy and can help those with other neurological problems as well.

Losing weight is not my main concern. I just want a healthy and happy brain. Sugar has always been a huge trigger for my migraines so now I’m putting my health first and saying no to sugar.

I don’t know how sustainable Keto will be for me. I already have so much more energy, less brain fog, and I’m sleeping better. I did not experience the “Keto flu” and I’m making sure that I still eat enough calories and drink enough water. I’m cooking new recipes and meal prepping and planning. I feel really good.

I want to push myself to do Keto for at least three full months and am keeping notes about how my body feels. I’m hoping that eating a healthier diet and avoiding my known food triggers will help me. I want to do what’s best for my body and this feels right for now.

I’m still taking things one day at a time but every morning when I wake up I remind myself that I am worthy of having a good day. I won’t let migraines bring me down forever even when I do have my really bad days.

Have you tried the Keto diet? Let me know if you have any tips!

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Five on Friday #11

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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?

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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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6 Migraine Essentials

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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?

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My Experience With Trokendi XR For Migraines and Headaches

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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

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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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