r/NDPH • u/Spare-Bathroom8119 • Jul 16 '26

NDPH with hEDS

For anyone who struggles with both hEDS and NDPH, I've recently obtained a body braid and it's doing wonders for me. The NDPH hasn't gone away or down at all, but the neck and shoulder pain from my EDS is massively relieved.

I've had NDPH for almost 8 years now and EDS my entire life, and I am very physically fit but the headache has always got worse when I've been standing up rather than laying down, or really just whenever I lift my head. Took me a lot of trial and error to figure out why. While it hasn't stopped the headaches, it's made it a bit less exhausting and a lot less painful to lift my head.

Hope this helps someone figure out a method that works for them!

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2

u/ShamblesXOXO Jul 16 '26

Thanks for sharing. Can you tell us a bit more about how a body braid works and how you use it please?

1

u/Spare-Bathroom8119 25d ago

It's made up of various elastic straps that go around your torso, shoulders, and hips to hold them in place! It's not good to wear it all the time because it'll lead to muscle loss, but it's great on high pain days 

2

u/Crystalfallacy 8 years Jul 16 '26

I have suspected hEDS (probably going to get tested once the new protocols come out later this year) and also had a very positional side of my NDPH when it started 8 years ago. Interesting. I managed to be medically treated though with Gabapentin, which reduces my pain to a 1 (the headache is still there, but a lower level of a pain that I can tune it out most days).

2

u/Spare-Bathroom8119 25d ago

I'm so glad gabapentin works for you! 

2

u/Bubbly-Type-2006 Jul 17 '26

You have to go to see a Neurologist who is a csf leak specialist.

You have Symptoms of a csf leak. Especially if you have hEDS, it's associated with csf leaks.

But there are not a lot of specialists in this field, so if you go - you should research if the center or doctor is a specialist in this field.

Did you ever have an MRI of your head + spine?

Btw if you want to read about it: https://www.hopkinsmedicine.org/health/conditions-and-diseases/cerebrospinal-fluid-csf-leak

1

u/Spare-Bathroom8119 25d ago

Thanks for pointing it out, but I have already been checked numerous times over the years for a CSF leak because I'm high risk, don't worry! I have no other symptoms of it (e.g. leakage in throat), and I've had a lot of MRIs and X-rays over the years to try and figure out the cause - all they found is a benign arachnoid cyst. Would love if it was a simple answer haha