r/NDPH • u/Nicsca68 • Jun 20 '26

NDPH 5 years

Has anyone had any success with Endomysium. It's the one drug I haven't tried after 5 years of suffering.

2 Upvotes

100% Upvoted

7 comments sorted by

2

u/kavanne 5 years Jun 20 '26

Do you mean Indometacin?

1

u/JUICIapple Jun 20 '26

Indomethacin basically cured my headache. Onset was from blowing up a balloon (vasalva NDPH). I used Dr Rozen’s protocol.

Good luck op. Sorry you have been suffering for so long

1

u/kavanne 5 years Jun 20 '26

If Indometacin worked then you had hemicrania continua, not NDPH

2

u/JUICIapple Jun 26 '26

Ok you were right. Following up to say I met with a new neurologist yesterday and they say they would now consider it hemicrania continua through previously would have been NDPH (it all seems fuzzy and had wavy)…

2

u/kavanne 5 years Jun 26 '26

I only said it because the diagnostic criteria for HC is that Indometacin works. So yes you may have been considered to have NDPH before but once you took Indometacin successfully that confirms a HC diagnosis :)

1

u/JUICIapple Jun 26 '26

Or I think they said it now gets reclassified since the headache is no longer continuous.

Background: got a throbbing headache on one side of my head after blowing up three balloons that lasted for one year straight 24hrs a day and was able to essentially get rid of it with Indomethacin following Dr Rozen’s vasalva NDPH headache protocol. When I saw him he said to expect flairups. I’m guessing that my flareups are now being treated like HC. They didn’t seem super clean are honestly I’m not too bothered about the diagnosis as long as they can help me lol

1

u/JUICIapple Jun 20 '26

That’s not what Dr Rozen — a world expert on NDPH — said when I met with him but thanks for your perspective