Idiopathic intercranial hypertension

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I've just been diagnosed with this and am waiting to see a neurologist.

"The neuroradiologist has suggested venogram due to narrowing of transverse sinuses, suggestive of idiopathic interracial hypertension"

I'm googling like crazy to get some understanding of this ahead of seeing my neurologist but I would love to hear from anyone who has personal experience of this condition and how you have managed it - will this ever go away/be reversed?

I was diagnosed in 2009. Have you had a lumbar puncture yet ? That has to be done to see how much pressure you have in your spinal column/brain from fluid. My symptoms were daily recurrent weird headaches for about 6 months prior, then when it got really bad a weird rushing fullness in my head, pulsatile tinnitus, jaw pain, hearing loss and then partial sight loss. That all came on over the space of 2 weeks though, and I saw everybody from a dentist, an optometrist, 3 visits to a gp, and a trip to the ED. It was the optometrist who diagnosed it, the rest of them missed it and told me it was anything from grinding my teeth to diabetes
As soon as I had my first lumbar puncture and they drained excess fluid, my hearing and sight went back to normal. I took acetazolemide for a long time, it pretty much managed the fluid along with occasional punctures to drain it. You have to be careful managing it so as not to damage your eyesight. I also had left sided weakness when my pressure got high. It's not a 'curable' thing I don't think, but it can be managed. I never needed surgery luckily. I've had about 3 or 4 recurrences of really acute symptoms, but haven't had a single episode in 4 years now.

Thank you such for responding.

Mine has only just been diagnosed but was picked up during a routine eye exam last autumn. I had no symptoms at that point.

At the beginning of this year I started getting, what I now understand from your post, pulsatile tinnitus and its only now that the connection between the 2 has been made- covid19 has played a major contrition factor to delays. Thankfully at the moment I have none of the other symptoms you have experienced.

I have now had my brain mri and I am now waiting to see the private neurologist to discuss management and treatment plans.