I was diagnosed in June this year with Idiopathic intracranial hypertension after spending the last 2 years thinking I was a hypochondriac. I started out with pain in my head, neck and legs, then I also started to have numbness in the saddle region, ringing and swooshing noises in my ears. I am in constant pain throughout my whole body. It is an internal pain that I can not describe. I then couldn’t walk to far because it felt like my lower legs were going to tear open. As well as feeling really dizzy and uneasy on my feet. I would go grocery shopping for 30 minutes and within 5 mins of being out shopping I could hardly walk. When I finally got to the car I had to sit sideways in the car seat and then physically lift each leg into the car because I could not lift them. After a while I had full body numbness. So of course not being able to do too much I did gain extra weight. When this first began I was approx 100kg. My GP sent me to Orthopedic doctors, Neurological doctors and gynecologist. No one had an answer. They looked at me as if I was neurotic or a hypochondriac. I knew something wasn’t right but the doctors kept saying there was nothing wrong. Also a year and a half ago I have had to start wearing glasses and have had to get them updared every 5-6 months. I got fed up with seeing doctors and all of them telling me I need to lose weight because I’m fat. I was caught between a rock and a hard place. Then in June I went to a doctor because I was waking with severe pressure headaches. I am also allergic to anything codeine or opiate based so the only thing I can have is Panadol and Anti Inflammatory meds. The doctor sent me to an Optometrist. They took a photo of my optic nerve and found that I had Papilledema. So I was sent to an Opthalmologist. They confirmed the finding. I have then had CT scans, MRI scans and also a Lumbar Puncture. I am on Diamox. They have also found that I have Empty Sella Syndrome. On Wednesday I presented to the Emergency Department due to having a pop sensation on the left side of my head followed by a sharp pain. I had my Lumbar Puncture last Friday and was discharged that afternoon. I then ended up having to go to the Emergency Department on Sunday due to severe headache, nausea and vomiting. Put on a drip, prescribed Stemetil and sent home. I work, but have had since last Wednesday off due to the pain. I have an extremely high pain threshold due to not being able to have strong painkillers and have battled through and kept working. But I think I am now over my threshlld. My skull feels like it needs to explode open at the back, my neck is so painful and I have limited movement when turning my head. I just need to know is there something I can do to help relieve the pain and pressure. Just wondering if anyone out there has experienced the same or similar. Please any help would be great.
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