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February 03, 2009


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I am now 30 years old and a single mom. I was diagnosed in May 2012 with PTC. It has changed my life completely. My last spinal tap was done in December 2012 and I felt horrible. After recovering that spinal tap, symptoms were no better. I am frustrated and I have permanent vision loss. The doctors seem to be clueless and just giving me appointments with no progression. I don't know what else to do. Please someone HELP!!

I have a friend just newly diagnosed, she cannot stand light, so any coping skills anyone has please let me know.

I am a 24 year old woman who was diagnosed in October of 2007. At that point in my life I had my first child and gained weight rapidly. At first doctors did not know what was wrong with me and as my headaches proceeded and I began to dramatically get worse they ER doctors decided to test my spinal fluid and upon doing the LP the doctors diagnosed me. Since then I have had countless LPs. I have increasing bad back pain now. I have went through Diamox treatment as well and it made me feel horrible. At this point I had two children and could not allow myself to sleep and not bond with my children. I am not overweight and hearing people getting their shunt replaced 10+ time and still feeling pressure scares me even more so. I feel like I am a prisoner in my own body at times. Doctors are now telling me through "vision tests" that they do not think i have PTC anymore. I don't think they really have a clue of what they are talking about. I have headaches that last weeks on end. My vision gets blurry, I pass out due to the excruciating pain. It immobilizes me at time. I need help. I need my life back

I was diagnosed with PTC in 1994 at 17 years old. I was not overweight, I did not have any type of medical condition, and the only medication I was on was the "Norplant" birth control implant. After a few years, the doctor finally took the implant out after the drug manufacturer added PTC to its list of side effects. From 1994 until 1998 I underwent 300+ spinal taps, 22 lumboperitoneal shunt insertions, revisions, and removals, three brain surgeries to try shunt from a different location after acquiring an Arnold Chiari malformation due to lumbar shunting, plus bilateral ONSF to try and save my optic nerves. I have reduced peripheral vision and permanently enlarged blind spots. My PTC symptoms resolved spontaneously in 2000, reappeared in 2005, resolved again in 2006, and now have reappeared yet again. I have several other medical conditions now including hypothyroidism, metabolic disorder, and am now overweight. Preservation of my vision has become my main concern again now as well as headache relief. I am not a candidate for any type of shunting procedure and have resumed treatment with Diamox and its bag of side effects. I am at a complete loss of what to try next and have had no luck with my doctors. Any information you can provide for me to discuss with my doctor would be greatly appreciated.

Hi all. Hope you have all found relief for the pain you are going thru. I just recently suffered a headache that has lasted 4 weeks. Finally called the Dr and his assiatant told me that it was just a swollen jaw joint. After giving me some meds the headache didnt go away. They sent me for an MRI and an EEG. Have had both of them and gotten results from MRI just before Thanksgiving. Drs assistant told me I had abnormal amounts of spinal fluid in my brain. Thats all he said. When I left with my diamox script I dropped it off at pharmacy and it took 2 days for the Dr, insurance company and pharamcy to get on the same page. I was told to take 500mg twice a day. The pressure had gone down but headache was still there just dull. After 2 doses my finger tips feet and mouth would start to get numb. I called my Dr and he told me to back off the meds. take 250mg twice a day. Tingling isnt as bad and pressure is still gone. Waiting to have my vision checked and to see a neurologist. Its scary. I am a single mother of a 3 yr old. Just hoping that I havent lost any of my vision or that I dont. Good luck to all of you.

I was diagnosed with pseudotumor cerebri.. and my neuro put me on water pill but there making me sick all i want to do is sleep all day. upset tummy tingling in my hands and feet numbness sometimes.. all this on top of my head pain and rnging ears.. i went to her and told her whats been going on and she said there not much she could do that i have to take the pills and if not surgery is my next option..... Please help surgery is not really what i want...

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