EDS type h and Cerebrospinal fluid leaks

[DJML]

Hi all, just a quick question is there anyone on here who has spontaneous CSF Leaks due to EDS type H?

I have had recurrent leaks since 2007 and this March EDS type H was diagnosed as the cause.

[JanWellcome]

invisibleillnessforum.com/i...

Found this today, it mentions CFS link. Jx

[DebZeb]

Yes. I had had sudden spinal CSF leak in 2011, six years and a few blood patches later, still have it.

My neurologist suggested I may have hEDS at my first consult with him regarding my CSF leak. I got my hEDS diagnosis from Professor Grahame in 2015 and he agreed about the link between Spontaneous CSF leaks and hEDS even though it's not proven yet. The leak was my first major EDS presentation. Even though I had other symptoms from birth, they were manageable. The CSF leak was the first sign of me 'falling apart at the seams'.

The CSF Leak Association is a great charity providing info and support.

csfleak.info

The invisible illness link from JanWellcome is a good one, watch Dr Carroll's video, it's really enlightening!

[Kajarvie1985]

I've just learnt about Spotaneous CSF leaks.

I'm currently being investigated for PoTS and have recently been diagnosed with joint hypermobility syndrome (After doing some reading I think I might actually fit the criteria for hEDS but that's another story and something I'll pursue at some point!). I also suffer from really frequent migraine type headaches which seem pretty resistant to treatments.

Someone posted a link to dr Carrolls video on UTube on a PoTS support group I'm a member of and it was really interesting.

It could fit with my symptoms. I am now considering whether or not to bring it up at my next GP appointment.

I'd be really interested to learn more so thank you for the links etc.