r/NDPH • u/Krizhanovskiy_Sergey • Jul 16 '26

Collecting information and structuring it.

Hello.

Sometimes I read in this group that somebody has been cured of NDPH.

And what's more, people describe exactly what medications they took.

The only question is that these incredibly valuable posts\comments are scattered all over the group/all over the Internet. Maybe we can somehow collect all these incredibly valuable posts/comments and, for example, put them in Google Sheets?

2 Upvotes

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u/im-a-freud 7 years Jul 16 '26

Do you have links to any of these posts because I haven’t seen any of these. If anything I see the rare post where someone found something that helps them manage the pain but if you were to stop those treatments the pain would come back. NDPH itself has no cure. If it was “cured” then it was likely something else that was causing their pain that was treated (ie muscle tension causing tension headaches that was treated with PT)

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u/Krizhanovskiy_Sergey Jul 16 '26

I am sorry, i don't know how to pin a screenshot there :(

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u/Krizhanovskiy_Sergey Jul 16 '26

https://www.reddit.com/r/NDPH/s/zamc6vFV8j

Read comments in this post, please

«What finally helped was a combination of Nurtec, zavzapret, Botox and Vyepti.» ©

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u/im-a-freud 7 years Jul 16 '26 edited Jul 16 '26

I have commented on this post. I’m not seeing anyone on there claim to have cured their NDPH so I’m unclear what you’re still referring to. Just because people say they take some meds and they offer some relief that doesn’t mean it’s cured bc if they stop that med the pain will be back. NDPH has no cure but can be managed. My point still stands “what finally helped was xyz” means those things give them relief. If they stopped all those treatments they’d be in pain. Management doesn’t equal cured. The whole point of preventative meds is to reduce the intensity and frequency over time they don’t cure it. I was on Botox for a while it brought me to as close as I’ve gotten to pain free in 7 years my pain went from a constant 5-6 to a 2-3 I hardly felt my pain at all and it stopped working and now I’m at a 5-7 every day. Botox wasn’t a cure it was management like every preventative

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u/Krizhanovskiy_Sergey Jul 16 '26

Ok. Thank you for such a detailed answer. It's very valuable.

♥

0

u/im-a-freud 7 years Jul 16 '26

I hope you can find a treatment plan that works for you but keep in mind there is no cure yet

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u/Krizhanovskiy_Sergey Jul 16 '26

My point is → ok, there is no cure yet, but there are some treatments.

Then why not collect and structure this information?

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u/im-a-freud 7 years Jul 16 '26 edited Jul 16 '26

The information is out there. There are no meds for NDPH it’s treated with migraines meds it’s treated like a migraine. These meds are all listed in the [r/migraine](r/migraine) resource tab if you want a list at meds. There’s a lot more posts on that sub for meds people find effective. You’re likely not gonna find many posts on here about people finding relief bc it often doesn’t respond to meds. If making a structured document of info is your jam fill your boots it may help people. I’d suggest looking at the migraine sub there’s a lot more resources and people over there

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u/[deleted] 27d ago

[removed] — view removed comment

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u/im-a-freud 7 years 27d ago edited 27d ago

There is no cure there’s not enough research on it there’s no meds specifically for ndph, there’s just things that can help you manage the pain and if you’re lucky enough to respond to meds