Postural/low pressure headache (CSF L... - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK

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Postural/low pressure headache (CSF Leak)

The_Bear profile image
The_Bear

Hi everyone,

Has anyone experienced a CSF leak low pressure headache? Apparently EDS folk are more inclined to get a tear in the dura around the brain and spine, allowing cranial/spinal fluid to leak and the pressure dripping around the brain.

I’ve had one for 11 days now, just out of hospital in hope I’ll keep improving after a blood patch. I am pretty stressed about it, just hoping for some stories of people recovering and how it went *crosses fingers *

Hope everyone’s well, Ellie

7 Replies

🤗♥️🥰🙏🕊✨🎄❄️☃️🎁🤶🎁🦌🎅

Hi The Bear I had a CDF leak in 2013, at the time I didn’t know I had EDS and I had pain blocker injections for severe backache - it resulted in 8 weeks in hospital and numerous blood patches, a spinal drain and then I joined a clinical trial (I was by now at the National Neurological Hospital in Queen’s Square London - the trial was run by Dr Matharu - I think he might be Prof Matharu now) to receive intravenous caffeine. This was amazing and after the first dose I was able to move my head without vomiting and by the time the second was complete I could sit up for brief periods, I had four in total and the headache was eliminated. I do know that I was advised to continue to drink energy drinks (with a very high caffeine content) and drink coffee to ensure the leak fully healed - it did and I have had no problems since. I hope this helps you and points you in the right direction.

The_Bear profile image
The_Bear in reply to Aunds

Hi thank you so much for replying, I’m on caffeine tablets and had one blood patch - maybe I need intravenous caffeine? I’ll ask the neurologist on Monday (going to call to let them know it’s not improving) thank you, you’ve given me some hope it can heal - the thought of being like this forever is too much.

Hi, I’ve had 2 blood patches recently with no improprement, being checked for CCI now, also common with EDS. People do get better with patches and it can sometimes take a while. Keep flat for as long as you can after the patch for best chance of it working. Best of luck 🤞

The_Bear profile image
The_Bear in reply to Jelsar

Hi, what’s CCI? I laid flat for days and was improving in hospital then the journey home just undid all the progress 😓

Jelsar profile image
Jelsar in reply to The_Bear

After your blood patch lay flat for as long as possible most conservative advice I’ve read is 2 weeks of up only 1 hr in 24 in short bits. The initial period is most important to lay flat. first 4 hrs total bed rest with bed tilted head down slightly if the leak site isn’t known. then only up to use loo for 24 hrs then the 2 weeks flat. Lay down in car travelling home from hospital. More advice here : csfleak.info

I’m the same much better flat I think I have a leak but beginning to think it could be caused by CCI. Cranial cervical instability - when I lie flat I’m not moving my neck much. I hope the patches work for you as they do for many people. Only gave it as a possibility if things don’t work out.

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