I am so sorry to hear of your suffering! May God wrap you in his healing grace and comfort you!
This type of headache is a new one on me. However, I have 3 kinds of debilitating migraines and daily pain. So I reach out to the Mayo Clinic a lot. Mayo and John Hopkins, where I finally received a correct diagnosis I believe are best in Neuro issues. Just my opinion.
Here is a link I found for you. I hope I helps. There may be a link somewhere as you read, to a support group
that can be very full to the information you are looking for. https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/news/complexities-of-low-csf-volume-headache/mac-20429665
Peace and strength