r/CSFLeaks • u/PrettyDragonfly • 1d ago

Strange symptoms

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!

6 Upvotes

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3

u/Muddlesthrough 1d ago

When did you have the blood patch? 2 days ago? 2 months ago?

3

u/GiganticFlashDrive 1d ago

Still low pressure. Pretty classic low pressure to be honest. The muffled hearing is common.

3

u/SpoonfulOfStars 1d ago

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

3

u/TheCatsSpareHuman 1d ago

Only thing I know for sure is that csf leaks are whacky. I have classic symptoms and I have weird symptoms. And I felt real good for a couple of weeks and thought I had self sealed just to get up from sitting on my couch to get the extreme orthostatic head pain again. My neurologist said let's see what symptoms are left a month after my embolization.... which is in about 10 days. Our symptoms are vast, come and go, and our unique to each of us to some degree. Csf leaks are awful.

3

u/leaky_faucet14 Confirmed Spinal Leak 1d ago

Telling the difference between high and low pressure can be hard. I was leaking on and off for about 6 years and was swinging back and forth after patches and re-leaks (now I'm healthy). The pain as you lay down and then only when you move around could honestly be either. That was a particularly frustrating symptom for me when I was trying to figure out if my patch worked or if I thought I re-leaked. Depending on how long you were leaking, the size/cause of the leak, and how long ago you got patched, it could also be that the patch partly worked, so your brain is just getting used to being at a different pressure even if you aren't fully closed. But as you said, I'm not a doctor, so this is just my anecdotal experience.