Hi there, I am new to this site. I stumbled upon this accidentally and was pleasantly surprised to see there was a place where people with PTC can share their experiences. If anyone has any comments re the below, I would be immensely grateful:

I was diagnosed with pseudotumour cerebri ('idiopathic intracranial hypertension' here in Aus) about 3 months ago. I had excruciating, debilitating headaches that kept me in bed for three weeks prior. I went to the GP who gave me paracetamol. I went back to the GP days later and was sent to the emergency room. The emergency room staff completely dismissed my symptoms as a migraine and sent me home with no tests performed and a script for panadeine forte. Days later, I was unable to move or leave my bed the pain was so bad. I returned to the GP and begged for something to help me sleep. Sleeping pills didn't work. The next day, desperate, I returned to the emergency room. Again, the hospital assumed I had a migraine. By now, I had been experiencing blurred/spotty vision for 2 days. I demanded a CT scan and following a clear result, I was given a migraine medication and sent home again, diagnosed with migraine. I knew it wasn't migraine. My vision continued to decline until whole sections of my peripheral were completely blurred. My vision started completely blanking for seconds at a time. Knowing the hopsital would do nothing and dismiss me completely (as had now happened twice), I went to Specsavers (an optometrist/eyewear retailer) hoping they could see something wrong with my eyes. I was immediately diagnosed with severe papillodema in both eyes and sent straight to the emergency room again - at a different hospital.

At this hospital, I was kept for 2 nights in the neurology ward. I have severe scar tissue (from Spina Bifida) in my lower back and so I could not have a lumbar puncture - which I was told is the standard treatment/diagnostic tool for this condition. I had a CT/MRI of the brain and spine, which came back clear. My optic nerves were so swollen that I was constantly visited from student doctors wanting to have a look.

I have now had about 4 follow-up outpatient appointments at the hospital, with both opthalmologists and neurologists. About 1.5 months after my 2-day stay in hospital, I had a CT-guided lumbar puncture which indicated my CSF pressure was still very high. Since the hospital stay, which was in March, I have been on 1500mg of Diamox daily. A doctor at some point mentioned in passing the danger of allowing the swelling (of my optic nerves) to remain over a long period of time. It has now been more than 3 months since my diagnosis and more than 4 months since the onset of serious pseudotumour cerebri symptoms. As I type, I have a headache. I can't even tell anymore if my vision is restored to normal or I am just used to/adjusted affected vision. I am worried that long term swelling (I know there is still swelling) and perhaps long term diamox use (I'm unsure on this) may be doing damage. During my last visit to the opthalmologist, it was suggested that surgery to implant a shunt may be necessary (but likely not) to ensure relief. At this point, I would LIKE to have the surgery if it would be a more sustainable long term solution.

At this point I am just a sitting duck waiting for my next outpatient appointment in August. I am not really comfortable with this.

Has anyone else been in a similar position? How can I demand more serious attention? Do I need to?

Thank you so much.