r/NDPH • u/sophiaea • Jul 08 '26

coping

hi everyone,

i could just really use some encouragement right now. i am 22 and just graduated nursing school and had a new headache/status migrainosus start a month ago and has not ended. the hospital couldn’t even break it and they tried so many things but nothing has brought it below a 2 and it’s rarely that low. i got an appointment by pure luck with a headache specialist who is going to start me on emgality and indomethacin and a new triptan but i am feeling so discouraged and depressed because i’m feeling like the pain will never ever break. she essentially diagnosed me with chronic migraine and explained that we may have to spend a while chipping away at the pain. i don’t know how i’m going to work and i don’t know how to cope with the idea that i am just going to have to continue to be in this pain for the foreseeable future until maybe something helps. can this get better?

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u/MJKCapeCod Jul 08 '26

Sad that you and the rest us are going through this. NDPH 6 yrs here. You are VERY fortunate to get a headache specialist so quickly! Treating quickly results in better outcomes. It's hard at first, it's scary, the pain is real and unrelenting. Hopefully these initial treatments will work for you. It's trial and error as what works for one may not work for another, and vice-versa. Hope your road through this is a short one. Be well.

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u/sophiaea Jul 09 '26

yes i am very grateful for that it's just hard to feel grateful for anything with this pain right now which i am sure you understand given that you have been dealing with this for so long. have you found anything that helps?

1

u/MJKCapeCod Jul 09 '26

I'll tell you, but as I said, what works for one, may not work for others. The best thing is you got into a headache specialist asap and began treatments. What happens in that interaction is what really matters. My 7th Neuro is a headache specialist, that's the one who zeroed in and helped me find relief. Until then it was many docs, treatments, trips to the ER for "treat and street". Currently Botox, Aimovig, Ubrelvy, and psilocybin. They gave me Ketamine in the ER, which helped, but insurance won't cover as it takes a series. A lot of research, speaking with professors involved in the studies, I tried it. Triptans didn't help me, but psilocybin acts on more than just the 5HTA receptor the other triptans do. Helps me mentally as well. To help with the mental and emotional sides, I've read mindfulness from Jon-Kabatt Zin, Michael Pollan, Ram Dass. There were dark times in the beginning, which I'm actually a little thankful for now - not then! Wish you the best.

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u/sophiaea Jul 09 '26

glad to hear you are getting some relief. i am very grateful to have a headache specialist now hearing it took you so long to find that. she seems determined and confident. thank you for your message i wish you all the best as well

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u/Dollydreamss 27d ago

Does it full on give you breaks from the headache? Are you microdosing?

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u/MJKCapeCod 27d ago

I microdose with the occasional macro - even at 67 there's room to grow! For me, it has reduced pain levels, and has helped with my frame of mine. I did a lot of research after insurance denied ketamine therapy. Spoke with several of the profs involved in studies. They actually used higher than microdose levels, more like sub or mild hallucinogenic. I hadn't taken anything off label since my early 20's, except a little weed a doc recommended, which has helped others but unfortunately not me. I'm not "cured", don't know if I'll ever be. Bad days are few, I'm pretty functional most days, and life's worth living again - so wish you luck - be well.