CSF leak/intracranial hypotension

[curiousintrigue]

Morning all
Has anyone any experience with this please? I was diagnosed a year ago and am having a frustrating time trying to move forward with treatment. The symptoms are severe headache, dizziness, ringing ears, loss of balance. I’ve yet to meet anyone who has been diagnosed with this so grateful for any help/advice. Thank you.

Sorry. No advise but I am wondering if I may be having symptoms

Awful headaches that don't ease with pain relief
Vertigo
Brain fog and new stutter
Light sensitivity
Fatigue

This is probably too late but dd had this happen after a lumber puncture for intracranial hypertension.

Not sure if yours is a temporary thing but she found lying flat on her back really helped. Caffeine is also supposed to help but dd doesn't drink tea or coffee so she didn't try that.

Sorry just reread and you say ongoing for a year. And yes I understand you said hypo not hyper but hypo can result from lp.

Are there any reddit groups for intracranial hypotension? I ask coz we found Reddit groups for intracranial hypertension helpful.

I haven't been diagnosed but I tend to get orthostatic headaches. Or I did. Scared to jinx it but I have been free from them for a couple of years.

I dunno why they started (in my early 20s) and dunno why they seem to have stopped in my late 30s.
I had a few debilitating attacks where I had to lie on my back completely silent and completely still for hours to not feel the pain. Speaking, yawning, rolling over - everything stabbed at the back of my head.
They used to start mildly at around noon time, always at the back of my head and always reacting to movement. Bending down would be unbearably painful. The pain would worsen into the evening by which time laying still was the only respite.
Drinking coffee does help!
Pain meds didn't seem to help.

Though I always knew that sleep will cure my headache - by morning they would always be gone. So I never went to the doctors, as I knew that I will be alright the next day.

I am wondering if me starting ADHD meds (stimulant, like coffee and raises blood pressure) is something that has put an end to my headaches.

It's a debilitating pain and it must be beyond awful to experience it frequently 💐

Thank you all for your replies. mine is better when I lie down but not always able to to that! It’s very odd - it just came on completely out of the blue. I have looked at Reddit thanks. I just wondered if anyone has had a myelogram and what was their experience of it as this is my next step.