I am a 27 y.o. female. I have had headaches to varying degrees since puberty, but was never treated. I have two children, 2 y.o. and 1 y.o. (and still carrying baby weight.) I have had problems with sciatica and joint pain for a couple of years now. Six years ago I went to the opthalmologist for a routine eye exam. He suggested I see a neurologist because my optic nerve looked swollen. Two neurologists, a bad LP and two blood patches later, I was bed-ridden, with no diagnosis, and feeling worse than I did when it all started. I did not pursue the curious optic nerve, because I was not having symptoms.
Fast forward 6 years, and the symptoms began. I had transient visual obscurations. All or portions of my visual field turned gray. I got headaches, the worst of which were orgasmic headaches, dizziness, decreased depth perception, acute pressure at the base of my skull, neck pain, weakness, pulsative tinnitus, and I could go on.
I was diagnosed with idiopathic intracranial hypertension, (a.k.a. pseudotumor cerebri) upon evaluation by a neuro-opthalmologist. I have grade 3 papilledema in both eyes and an opening CSF pressure of 31 (elevated.) IIH is also most prevalent in women of childbearing age with recent weight gain, which also led to the diagnosis. Upon evaluation of my Brain MRI she also found that I had a mild Chiari Malformation (4 mm herniation).
She recommended 2 g acetazolamide daily which I have taken for two months now. In the first month the visual symptoms, along with the worst of the others, subsided. Then the visual symptoms returned. They are not as bad, but still worrisome, considering the severity of the papilledema remains unchanged. She has also noticed a slight degradation of my peripheral vision over the past couple of months. She says I may need decompression surgery if my vision continues to get worse.
I am wondering if anyone else has experienced both CM 1 and IIH. The most recent research I have found is from 2006, which suggests that many patients (I believe the figure was around 25%) with CM 1 also have IIH. Also, is it common to experience nerve and joint pain associated with CM 1? Are there auto-immune diseases that are associated with CM 1? It seems as though my symptoms, for now, are mostly IIH related, but I was hoping someone else here may have some advice since the diseases are so closely related.