If you believe you are suffering from one of these conditions options are currently limited. This is another one of those areas where there are very few experts and the patient usually becomes more well-versed in the medical condition than the doctor. There are patient groups where the members are making headway by seeing certain select doctors who specialize in these rare areas of healthcare.
Tarlov Cysts – https://www.facebook.com/groups/971580869576257
ME/CFS+ Brain and Spine – https://www.facebook.com/groups/1353765701467793
Spinal Leak Support – https://www.facebook.com/SpinalCSFLeakSupport
Spinal Leak Foundation – https://www.facebook.com/Spinal.CSf.Leak.Foundation
Pseudotumor cerebri IIH – https://www.facebook.com/groups/247197510096871
Although I have had contact with several individuals with intracranial hypotension post FQs, there is no support group for this malady. Certain health centers like Mayo Clinic Rochester and Duke have specialists who deal with these issues, however, they will always approach the situation as if there is a CSF leak present. Intracranial hypotension caused by an mitochondrial or metabolic dysfunction is considered very, very rare, with Mayo Rochester having seen one case. That doesn’t mean they don’t exist however as logic would dictate if medical science sees cases of metabolic intracranial hypertension, then conversely cases of metabolic intracranial hypotension should exist as well, and they do.
Brain pressure abnormalities, both hyper and hypo, can sometimes be imaged with MRI and CT. Also, I will concede that a good local neurologist can probably aid with intracranial hypertension and PTC, but most cannot comprehend and/or deal with hypotension or CCI.
Let me throw in the caveat that most doctors/neurologists/surgeons only associate intracranial hypotension with trauma to the dura. Their training and experience don’t allow a differential diagnosis to include causes other than a noticeable leak in the dura such as Tarlov cysts, venous fistulae, metabolic imbalances, and especially epigenetic changes wrought by the FQs. Be careful, this is an area where an uninformed doctor can cause more harm than good, so proceed with absolute caution
PTC and the associated dovetailing conditions can be chronic or acute. Some cases can indeed be severe medical emergencies and require evaluation to rule out other causes such as tumors, acute trauma, etc. When in doubt consult with a trusted medical practitioner or advisor.