I was diagnosed with intracranial hypertension as we call it in the UK, the same as pseudotumor cerebri. I was diagnosed in 2008.Firstly this is classed as one of the rare diseases out there and it can often be very difficult to get a diagnosis and the treatment and care that follow can often be inadequate as not that much is known about IH as we abbreviate it here.
There are many symptoms that are associated with it, the most common being the severe headaches, whooshing in the ears and papillademma, a swelling of the optic nerves which can lead to vision loss if left untreated.
I had always had headaches but I didn't pay them that much attention or feel the need to go to the drs.I put it down to the stresses of every day life.I began getting this crazy whooshing sound in my eyes, which went all day and along with this my eyes were burning, very sore and just didn't feel 'normal'.
I ended up being admitted to hospital as an emergency and after ruling out a brain tumor they told me that it was more than likely that I had intracranial hypertension.I had a lumbar puncture to confirm diagnosis and with an opening pressure of 38, which is classed as high, I was diagnosed.My left eye was in a bad way.I had severe papilademma and I had lost some vision in that eye.As far as the vision that I had already lost, I was told that it was too late to save it.The pressure had been building up for so long, unbeknown to me that the veins in the back of my eye had 'died'.All they could do now was try and manage my ih and stop it from getting any worse.
I have been on diamox which is more often than not the standard treatment for ih.I have been on this since diagnosis and so far it has helped my eyes and helped me avoid surgery.
I actually run a very active support group on FB, with members that have ih themselves as well as many Moms to children who have ih.If any of you are interested please let me know.There is also a wonderful site http://www.ihrfoundation.org/ which has lots of info.