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 have been DX with this since August 2011... I have been dealing with bad bad headaches and was put on lasixs2x a day and Diamox 500mg x2 a day.... but my thing is this ....... this is the second time since I been dx that I feel this horrible ... I am nausated and headace daily (last stint lasted 2 weeks landed in er) this is the 2nd week this time as well.
I cant stand the smell of food, perfumes etc..... no one gets it I swear.... I am just wondering do any of you get this way as well? My ER Dr told me that this is the part of the DX until I lose weight and have it under control....
Makes me mad I lost 55 pounds and still trying I mean really you dont look to cute throwing up while walking a threadmill yet he doesnt seem to care!
Sorry for venting just having really bad days this month :/
Shelly
I cant stand the smell of food, perfumes etc..... no one gets it I swear.... I am just wondering do any of you get this way as well? My ER Dr told me that this is the part of the DX until I lose weight and have it under control....
Makes me mad I lost 55 pounds and still trying I mean really you dont look to cute throwing up while walking a threadmill yet he doesnt seem to care!
Sorry for venting just having really bad days this month :/
Shelly
I am sorry your headaches are so bad. Have they said anything about upping your dosage of Diamox? Or even as a last result considering a shunt? I do hope they are able to get you some relief for your headaches soon! How is your vision?
I just did the nerve test after a bad bad LP that had me laid up for a while due to the 1st dr hitting the sicatic nerve 2xs and burising it.. feels like when it rains it pours right?!?!
But I will fight this and do what I need to just wish they would find us all some relief in the middle ya know!!
When my headaches were bad I had a very hard time with not only noise, but smells as well. Perfume sent me over the top! I think every sense is heightened, except the ones you need, like memory!!
You have lost a ton a weight, congratulations! My personal opinion is that doctors that focus on weight loss do. It understand the disease very well. Did you have your puncture done in an OR setting or with florscopy? It usually goes much smoother under those conditions. I am one of those people that is terrified of getting a puncture after having a very traumatic one, but the OR experience was much better.
Good for you on the weight loss! I hope they can give you something to break the headache!
Try to rest as much as possible.
Amy