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Tough Cookie

I got my first migraine when I was 11 years old.

I was playing with friends and suddenly, there was a tiny spot in my vision that was missing. It was just…missing! Over the next hour, that spot grew larger and spread across both eyes. After a while, my vision was completely fuzzy and I couldn’t see anything. I was scared. Really scared.

My mother took me home immediately, which is when the excruciating pain started to set in. By the end of the afternoon, I had lost my vision, vomited, and experienced pain unlike anything I had ever experienced.

That was the first migraine.

The second came shortly after, then the third, then the fourth. They started off as episodes every few weeks. Then, they started to come more and more often.

By the time I got to high school, the headaches were weekly. They started affecting my grades, they started affecting my social life, they started affecting my mental health.

Having migraines is interesting, because it’s not only the worst pain that only people who have also experienced it can understand, but it also makes you feel lonely, sad, and hopeless. The emotions that stem from migraine are difficult to understand and, like the pain itself, there likely aren’t words that exist in the English language that could properly describe them.

One day during my junior year of high school, I got a migraine. It was routine, it was just like all the rest–or so I thought. The next morning, I woke up and the migraine wasn’t gone. This wasn’t unusual; I would sometimes get migraines that would last for two or three days, so I didn’t think anything of it.

I woke up the next day and the headache still wasn’t gone. Then again, the next day the headache was still there. After several days of this, I started to get concerned. I started having to miss more school than usual and I was weaker, both physically and emotionally, than I had been in a long time.

I went through three neurologists that year, an MRI, countless blood tests, an EKG, an Echocardiogram with bubble study, and a bunch of other poking and prodding.

Eventually, I got a diagnosis from a really fantastic neurologist who worked hard to put together the puzzle that was my pain for 6 years: new daily persistent headache (NDPH).

This means that I woke up one day when I was 17 with a headache, and that headache never went away. I wake up every day with that same headache. It’s a new type of headache. It’s not migrainous in nature anymore. I don’t get an aura, I don’t always have sensitivity to light and sound, my pain is not localized, I no longer vomit, and I no longer faint. That day, something changed. And it hasn’t left me alone since.

I tried everything for this headache from epilepsy medications to blood pressure medications to anti-depressants to dietary changes to acupuncture to essential oils and so many more. Some things help temporarily, but nothing has been able to knock this headache down.

I’m 22 years old now and I have had the same headache for 5 years. Because I was a child when I started getting headaches, I don’t remember what it’s like to not have a headache. Daily pain is my normal.

Call it a strange bout of something similar to Stockholm syndrome, but I affectionately refer to my headache as a tiny man inside my skull who walks around periodically smacking my brain with a jackhammer. I imagine he looks sort of like Mario, with overalls and a red hat.

I do that because what else can I do? Having a headache every single day sucks. Plain and simple, it just really sucks. If I looked at my pain as just that, I would miserable.

Point being, the little man–let’s call him ‘Jack’– though the bane of my existence, is also a part of me. As much as I hate little Jack, I wouldn’t be the person I am today with him.

NDPH and migraine have taught me true compassion, empathy, understanding, and love. They have taught me to say yes to every opportunity that comes my way, to smile when I’m feeling sad, and to express my emotions openly.

Some days are really hard, and it’s never easy to explain to my loved ones what is going on inside my head (granted, I can’t always explain to myself what’s going on in my head either, but don’t tell them that). I miss out on a lot with friends and family, and I’m often afraid to do things that I like because I don’t want Jack to start going ham on the inside of my skull.

There is no way to always be positive in life at all, much less with a pain in the neck (lol ‘pain in the neck’) headache disorder, but I do all I can to stay positive and above all else, to be myself.

Whenever my pain is elevated, I tell myself over and over again that I am a TOUGH COOKIE! And so are all of you. That is what we are here for: to support each other when we are feeling beaten down by each of our own little Jacks, but also to remind each other of our strength.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • ChronicallyEverything
    1 year ago

    I’ve had the same headache for about 3 months now. I didn’t know that this was a thing. I thought I was just stressed. The pain level ebbs and flows, spikes and retreats, but never fully goes away. I thought at first that I was having a medication induced rebound headache cycle so I stopped using triptan rescue pills and it was really bad for a couple of weeks, but nothing changed. It’s the strangest sensation. It’s always there. I’ve learned to mostly ignore it when it’s at its smallest because otherwise I would be completely incapacitated. Thank you for sharing. I’ll report this to my doctor. It’s not just a symptom of my chronic migraine.

  • Bernadettemt
    1 year ago

    Dear emmermills85,
    I too have daily headaches. I am now 60 years of age (hate to say old!). I have been diagnosed as a chronic migraine sufferer. I got my first migraine at age 14 with similar symptoms to yours and they progressively became worse.
    Have also been through every test, treatment, etc. I have seen doctors, neurologists, psychologists and psychiatrists.
    I now take antidepressants and migraine medication but still have headaches daily and full-blown migraines occasionally.
    Like you, I just accept this and try to make the most of every day. I have up’s and down’s but also try to involve myself in enjoyable activities and share time with a group of others suffering chronic pain and depression. It really helps to talk to others who understand and we support each other. We have to stay strong, enjoy life and keep smiling. Thank you for sharing your journey and may it continue to improve.

  • Shelly
    1 year ago

    Thanks for sharing.

  • JoniB
    1 year ago

    I had headaches like you are describing for 7-8 years, starting around 17. When I became pregnant at age 25 they seemed to stop. I started having migraines, but much more manageable that the headaches that never went away. I then dealt with migraines that lasted for 5-6 days for years, until about 57. Now I only have occasional migraines and have felt so much better. I hope for your sake as you get older your daily headache will also go away!

  • gleisner
    1 year ago

    I feel your pain. I have had a daily persistent headache for over 20 years with little relief. My pain feels like it originates from my sinuses thus I have gone through 3 sinus surgeries to help but to no avail. I have tried various other medications and techniques such as acupuncture with little relief. I continue to work with a neurologist and now believe it could be an issue with my trigeminal nerve. I pray for the best for you and days of being pain free!

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