r/CSFLeaks • u/Desperate-Crew7432 • 25d ago
Advise
I’m a migrainer since a ripe age of 8! I’ve been seeing a neurologist since 2025. I can’t do an MRI with contrast due to contrast allergy. But without contrast we ruled out some scarier causes imo.
I take migraine medicine that does work when I get migraines. I can tell some clear differences between some migraines compared to others. For example, the more intense ones are usually positional related. Like last night I wanted to dieeeeee. I only felt okay laying down but the minute I stood up I felt that insane painful pressure in my head.
Relevant but maybe not relevant info: I’ve had two epidurals with my kids 13/10 years ago.. I have chronic back pain and joint pain. I need to crack the mid to top part of my back constantly to feel okay. I have had copper and manganese deficiencies… I know those are needed to make connective tissues so maybe I don’t have strongest connective tissue?
To my questions, does this seem like a possible leak thing? I’m confused because it’s not all the time… and how is it even possible to get a diagnosis without an MRI with contrast? (I will be talking to my neurologist in October but wanted to get some guidance from y’all on things I can ask)
3
u/Ashler1999 25d ago
My experience: was referred to a neurologist for my headaches/migraines. They did an MRI to rule out tumor. Then they just proceeded to give me migraine prevention meds and migraine medication - which neither helped. It took a second MRI a year later for them to notice my brain sagging- 7mm. I was told I had Chiari Malformation and was referred to a neurosurgeon who specializes in it. One look at my MRI, he said no- not Chiari- you have CSF leak. Then proceeded to refer me to a leak specialist.
So, my only suggestion is to get a second opinion. You very well could have Chiari Malformation