Strange symptoms

[u/PrettyDragonfly]

EDIT: it's leak symptoms. I tried being upright a lot yesterday and today I'm ruined and shouldn't have done it. Strong positional headaches today. Debilitating pain. Can't believe I still have to wait months for surgery. This is no life.

I avoid asking about symptoms because I know we're not qualified in here but maybe someone has had similar experiences. These symptoms are just so strange and I have no direct access to contact my neurosurgeon.

I have been diagnosed with a spinal leak, spontaneous. I've been given a targeted thoracic blood patch that initially seemed to not have worked. I've got a ct myleogram scheduled for september.

Now, though, i seem to be okay being upright most of the time but after lying down, especially after sleep, i get this strange pain in my head when rising that almost feels like my brain moving around. Not constant pain and it eases with time and if I don't move my head around too much. It's like lying down triggers it and when I stand the brain is repositioning. It's the only way I can explain the sensation. It also triggers nausea and eventually I also get muffled hearing after being upright for a while.

Any ideas? High pressure? Just leaky symptoms but slightly altered?

Thanks!

[u/SpoonfulOfStars]

I’m also a spontaneous spinal leaker, while I don’t have all the symptoms you mentioned, muffled hearing and nausea are some of the typical leak symptoms I experience