Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
I was DX in march 2014. My eye Dr. Found it BC I was complaining of headache with a dark shadow in my right peripheral vision as well as my left, though not as bad. I am a veteran so they told me to get to Fayetteville (where our closest er is) to get admitted to get all the tests done. Well it was confirmed through MRI/ CT scans it was PTC. They did a LP on me and it hurt like h#$L. My pressure she said was over 300. Whatever that means. The Neurologist who did the LP was out of practice. So i had a leak. Was puking whe they wheeled me to my car. But I didn't know why I was puking. 3 days later went to mercy in Springfield for a blood patch 4 days later. Aughhhh. Pressure went down swelling went down and then now.... Pressure back up and new LP scheduled for the 7th. Nervous as hell. Taking diamox but I don't know my amounts. Any advice for a newbie who is scared.
So sorry you a spinal fluid leak from an LP, those are the worst! I hope that when you have the next LP they do it under fluoroscopy since that can help prevent leaks from happening. Ask the hospital if your next LP can be done that way.
750 mg seems like a lower dose of diamox then normally given esp with your high amount of pressure. The first time I was dx. my PTC went into remission after I was taking 2,000 mg of Diamox (1,000 mg in the morning and 1,000 mg in the evening)....I think I remember that anything over 24 or 25 cm is considered PTC, basically that your pressure is very high. I'm assuming you have papilla edema from your description of the dark shadow you have in your peripheral vision and hopefully the diamox will eventually reduce your pressure/papilla edema. I don't know if your weight is an issue or not since losing weight can help decrease or even have your PTC go into remission (though I was re dx with PTC and I am not overweight).
A great reference website is the Ihrfoundation.org. It is the only non profit research facility in the world medical research for chronic intracranial hypertension (which is the updated term for PTC). It is in the U.S. and has great information and will get back to you in 24 hours if you have a question.
I hope you are having a different Dr do your next LP. You are in my prayers, hugs, Jazzy