The Headache Heroine: My Story With Chronic Illness

14479803_10155425920248902_1069422246003443032_nI’m a 23 year old trying to live a normal young-adult life while battling chronic daily headaches, migraines, narcolepsy, mild POTs, hypermobility EDS and severe food allergies. While I have recently been diagnosed with the majority of those conditions, my headache disorder has been my partner in this life for the past decade. What started out as exertion migraines while playing softball/exercising during my youth and teen years later evolved into a daily battle–a headache that was there when I woke up and when I went to sleep. A headache that while it isn’t always a high intensity pain every day, it is still present every day. It’s gotten to the point where I could not tell someone what “normal” feels like, because I don’t remember what it feels like. When people ask “do you have a headache today?” it gets exhausting replying “I have a headache every day.”

My friends used to joke that I was the “medical marvel” or “medical mystery” of the group. Unfortunately, I fit that title. Along with my daily headaches, I’ve visited countless ERs for causes doctors never could pin point. I’ve had skin, teeth, GI, chest, back, eye, etc issues that take up time I would rather be using to focus on how to fix my headaches. I’ve seen every type of doctor their is (pretty much) for a multitude of different issues that seem to occur like clockwork.

As one can imagine, I’ve faced my fair share of emotional and mental low points because of all of this. I’m only human. But my goal here is to not only lift my own spirit and give myself new strength, but also to lift the spirits of others and show people that they have much more strength than they give themselves credit for. We can overcome all of life’s adversities with enough courage and gumption.

What it comes down to is this:

I’m here to use my love for writing to not only give myself a release from the pain and health issues that I face, but also to help fellow friends and spoonies who battle any illness/disorder/hardship alongside me every day. I want to help you see sunshine where you used to only see darkness. To see the sunflower growing in the distance.

We all have our own battles and often feel like we’re fighting them alone. We can often end up feeling like no one else understands what we’re going through. I want to help you see that we’re not alone.

13 thoughts on “The Headache Heroine: My Story With Chronic Illness

  1. Wait. You have narcolepsy too?! I just commented on one of your older posts… I feel like I’m stalking you, sorry, lol. But I feel like we were meant to find each other!! I am 25 and have had headaches constantly since 6th grade. I was diagnosed with narcolepsy when I was 22. I have seen so many doctors trying to figure out various ailments but no one ever knows what’s wrong! I want to talk to you! I’m so glad I found your blog!!

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    1. Haha yes I do! Don’t apologize, I started this blog in hopes of finding people who were experiencing similar things to me cuz before this I just felt like I was the only one in the world with all of these health issues that no one else seemed to even know were a thing! I was actually jus diagnosed with narcolepsy a few months ago, at 22 also haha smalllll world! I’ve seen countless doctors too it’s scary how much time I’ve spent in doctors offices. My neurologist now is convinced that my narcolepsy has been the cause of my daily headaches all these years but even after treating narcolepsy my headaches haven’t gone away so I’m not convinced. I’m super super glad you found it also 🙂 I definitely think it will be beneficial for us to connect! Feel free to email me if that works for you 🙂 my email is in my contact section of my blog!

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  2. Just came across your blog tonight, I haven’t had a diagnosis as such but the term chronic daily headache has been mentioned. My headache is there all the time and changes in place and severity throughout the day. As you know it’s pretty frustrating it’s been about 3 years now and I guess I’m just starting to accept that it’s a chronic illness that can not be fixed. It is horrible that someone else has this too but kind of nice to have someone who can relate. Hope you have lots of good days 🙂

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    1. I’m sorry to hear that 😦 like you said, I hate hearing of other people experiencing similar things, but it is nice to know we aren’t alone. I hope you have lots of good days too and keep on being strong!

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  3. I’ve had a migraine 24/7 since March of 2012, when I was 13, and like you, have had all of the doctors and treatments and advice and opinions, but no answers, no diagnosis. I have been diagnosed with Fibromyalgia and CFD since, but to every doctor I’ve been to, nothing helps, so I’ve become a mystery that no one wants it figure out. I’ve accepted that fact that I may very well live with this for the rest of my life, and I think, for me at least, that was part of my process of mental becoming better. I actually went to a month long pain clinic at Mayo Clinic located in Rochester, Minnesota and it completely changed my life. It is so nice to know that there are others out there going through something similar!!

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    1. I’m so sorry to hear that you’re going through something similar and that you’ve been going in circles trying to find something that helps :/ I’m so glad that the pain clinic helped you though! Sending you some love and well wishes!!

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    2. Can I ask: did the inpatient pain clinic help? If so, how? I have suffered awful daily headaches now for about 6 years. I just cannot imagine having to accept this forever. Thanks.

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  4. I just found you from the Mighty. I was beginning to think I was alone. I’ve been through so many tests and no one can seem to find out the cause or a treatment that works. I’ve been diagnosed with migraines, tension headaches and daily headaches as well as fibromyalgia. I’m being sent for a sleep study for possible narcolepsy. Every other test that’s been run on me has come back unremarkable. I feel like my doctors are at a loss and I’m in pain and exhausted. It’s nice to know there’s someone else out there who is going through the same things that I am.

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    1. Thanks for commenting! I’m so glad you found me also! I did a sleep study after endless tests that came back with no results as well, and the sleep study showed that I do have narcolepsy. And while I didn’t want to add another diagnosis to my list, it was kind of oddly comforting to get positive results from a test. It’s so exhausting to have head pain every single day. Physically and mentally exhausting. It’s good to know we aren’t alone. Even though we wouldn’t wish this on anyone! I’m happy to talk more about any of it if you’d like!

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  5. Hi, just found you today. So many of the things you say sound just like I would say them. I have had a continuous, 24/7 headache of varying intensity for over 20 years. Every minute, every day……… with no medical reason. I’ve spent tens of thousands of dollars on every convention and holistic treatment known to man and I am still exactly the same. I get so embarrassed with people asking if I am better that I started telling them that I am just so I don’t have to see the looks of confusion on their faces. People just don’t get it. They can understand getting a lot of headaches, they can understand migraines but they cannot fathom a headache that never, ever leaves and that pain killers don’t touch. Even just the harmless question of ‘are you still getting a lot of headaches’ isn’t worth trying to answer as I feel like screaming out ‘It isn’t a lot of headaches, it is one effing headache that has never gone away!!!” When I first got it, internet wasn’t even really a big thing so I have found it sad but somewhat comforting to find other people over the years out there trying to exist the same way as me. It is draining beyond words trying to be a normal person living with this condition. Some days I can cope with what I need to do but other days I just want to hide. It is knowing that a couple of days rest and some painkillers isn’t going to fix it, it is there like a big black monster in every picture of my future. Don’t get me wrong, I haven’t completely given up on a normal life but after 20 years, it takes a lot more faith and optimism than I have left to imagine a headache free existence.

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    1. I’m so sorry to know that you are facing something similar. But I do agree, it is sad but also comforting to know that there are people out there who are facing something similar and who can kind of get it. I truly hope one day the pain isn’t so bad!

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