I have recently been diagnosed with Intercranial Hypotension and am looking to talk to anyone else who has had this. Right now my headaches and neck pain are mostly gone but I have been left with the double vision. I am looking to find out what kinds of treatments did people go through and how long this condition went on. Any help you can give me would be appreciated as this seems to be a rare condition and I am not getting much help with my health care professionals.
Intracranial Hypotension is a Cerebral Spinal Fluid leak aound the brain. It has nothing to do with High Blood Pressure as that is Hypertension. I have a tear of the dura around the brain causing the CSF to leak. Because of the leak, the brain, which floats so perfectly in that fluid, is not floating properly, causing the brain to "sag" or drop down in the head, pushing on nerves. Those pushing of the nerves, is what resulted in the double vision and more specifically nerve # 6 which is being pushed by the brain. nerve # 6 controls the movement of the eyes right to left and my right eye is not tracking properly. I did have a severe headache on the first day and then for 7 days had severe neck pain where it hurt to stand up or even sit up. I had a CT scan, Lumbar puncture and and MRI and it was with the MRI that they could see the brain sitting low in the skull. Also the lumbar puncture did not produce much Spinal Fluid and that was because it was leaking out somewhere else. I have been told by the neurologist that this is quite rare and happens either because of head trauma, or in my case, genetically, there must have been a weakness at a specific spot on the dura. I had been moving furniture the day before this started so the pressure caused by lifting something heavy, could have cause the weak area to tear, but there is no official way to know exactly what happened. I am trying to find someone that this has happened too, so I can hear their experiences and treatment. I have found more information on the internet, then what my doctor is telling me.