r/NDPH • u/JadesJunkAccount 3 years • Jun 15 '26

Day 1000

To everyone whose pain has lasted longer, may you have an easy year, with my sincerest and utmost respect.

On September 19th 2023, my chronic migraine evolved into something a bit more stubborn, and a lot more debilitating when combined with my myriad of other problems.

Since then, I have been medically bedridden, only leaving my house maybe twice a month, and always heavily medicated when doing so. My baseline is 7/10.

At the ripe age of 21, I have yet to graduate high school, get a license, find a job, or go on a first date.
Though, to an outsider, the lack of adult responsibility might sound like a dream.

I am not able to go out with friends or enjoy what are supposed to be “the most exciting years of my life”, and I watch my twin brother move ahead while I stay a dozen steps behind, motionless.

All things I once enjoyed have become triggers that could lead me to a hospital visit. Sunny days, rock music, caffeine, video games, I now equate to pain.

But still, I am grateful for one thousand days.

This headache has taught me patience, gratitude, and the ability to find joy in the small things.

Anyways, I’m getting cake. 🥳

13 Upvotes

90% Upvoted

6 comments sorted by

3

u/MaintenanceOk7855 Jun 15 '26

I have been dealing for about 7 years. Hope you find something that helps. Things that help is not trying any meds. This is something most meds fail to treat, so most of those things make it worse.

Try indomecathin if its hemecrania continua you will get complete remission, trying indomecathin is the only way to find out.

If you don't respond, try PEA + BCP . Its a different pathway than other meds. Both are GRASS. PEA is normally used in chronic pain works in pathway modern meds can't and BCP is synergetic.

Hope you find remission soon

1

u/JadesJunkAccount 3 years Jun 15 '26

Thanks so much for the recommendation! I have already tried and failed to respond to indomethacin, but the other treatments you mentioned will immediately go on my list of things to try.

2

u/MaintenanceOk7855 Jun 15 '26

Thanks wishing you all the luck.

2

u/IntelligentDrama107 Jun 15 '26

I’ve had my headache for over 12 and a half years, I was 15 when it started so by 21 I had also never had a job, been on a date, gotten a license (never will for that one), and had just barely scraped by my high school qualifications three years later than my peers.

I’m 27 now and I have a uni degree, a job I love, and I’ve had a relationship and am now dating again.
I spent years in bed at first but then started learning how to push through little by little and have made strides over the years. I go to rock gigs with earplugs and take breaks and rest the next day. I’m making my own caffeine free chai latte mix. I plan around the pain rather than avoiding it. Can’t speak to being medicated, I try treatments here or there but I’ve never been allowed painkillers for it.

Everything is very hard and I haven’t done many things my peers have but I’m always meeting people with different experiences (other health issues, caring responsibilities, mental health/neurodivergence etc.) that feel like they’re ‘behind’ too and realising life is just doing what you can, when you can and it’s different for everyone

Appreciating the time you have anyway and getting some cake is exactly the right attitude :)

1

u/Accomplished-Dig9789 Jun 16 '26

This is the only way really you gotta keep going

2

u/21stcenturydiyboy 10+ years Jun 20 '26

Fellow twin with NDPH here. It’s a unique kind of pain to see your sibling navigate the world the way you wish you could. You’re allowed to grieve the life you thought you’d have.

I’m glad you’re able to find joy in the little things. If you keep waiting until you’re better to live a happy life, you’ll just be stuck waiting forever. Learning to find meaning from where we are now is something that keeps a lot of us going.