Re: Re: Re: pseudo-tumor cerebri

Posted by Joy on 10/22/05 at 10:58 PM

My name is Joy. I am a 36 year-old mildly obese black female living in La. I was recently diagnosed with PTC on October 14, 2005 after experiencing 102-103 degree temperatures with severe severe headaches and a painful stiff neck for four straight days. It just happened all of a sudden. I went to the family MD who thought maybe I had meningitis. I was quickly admitted into the hospital , assessed by the admitting MD, sent to CT scan, then to lumbar puncture with a guided fluroscope. The radiologist immediately took note that my pressure was almost 40 which is extremely high compared to a normal I believe is like 12-16(don\'t quote me on that normal range). Immediately after some of the cerebral spinal fluid was withdrawn for samples, my headache eased up. The radiologist told me then that it was probrably PseudoTumor Cerebri. When I questioned him, he told me that he would let my admitting doctor explain it to me in depth. Here I am a CCU/ICU nurse who had never heard of this condition before. I could only make out that pseudo=false. I figured it to be fluid filled sacs of accumulated CSF compressing the brain. My question were -where did they come from? why now? and how do we get rid of them? I was started on some Diamox 500mg twice daily, but my blood pressures wouldn\'t hold up. My BPs were low 80s/30s, so I kept the headaches until my BP was up high enough to take pain meds. I take my hat off to you ladies for doing this for so long. I don\'t know that I can last that long given the fact that I don\'t have much of a blood pressure. At this point, I plan to try to control the PTC with diet and exercise. I am now taking the Diamox 500mg once daily and will wean myself to one every other day. When I am taking the Diamox, I have no brain to limb coordination. It takes me 2-3 times to step up. I am falling and stumbling all over the place. I am so uncoordinated that I won�t trust myself behind the wheel of a car. Until I am where I need to be, I will stay prayer for all of you and myself. When I read your notes, it brings tears to my eyes because I know your pain. I, too, am being followed by neurology and opthomology. May God Bless and Keep us all near.

Joy