A bit fed up:(

[Sarah13802]

Hi all

I have had lupus now for 18 years and have now been told I also have something called benign intercranial hypertension and it is lupus related.does anyone else have this ,I haven't really been told a lot about it and I don't want to research online and scare myself silly .if anyone can help I would much appreciate it .

Xsarahx

[Tinythepanda]

Hi there,

I'm sorry to hear you're having a rough time. I have a lupus like syndrome as well as APS, Raynauds and possible sjogrens.

I was also diagnosed with idiopathic intracranial hypertension. There are some links to this with lupus. They normally diagnose by doing a lumbar puncture and find the pressure is high and if your optic nerves are swollen. Depending on the severity depends on the treatment. Mine was quite mild and only required diuretics to help reduce the fluid. At the time I had blinding headaches and vision was a bit odd. I believe if your pressure is high and if the optic nerve is quite swollen then they would consider a shunt.

I've had no symptoms for a couple of years and been about the same amount of time since I last needed a lumbar puncture.

I guess like most conditions it can vary from mild to severe. But in my case it resolved after a while. There are times I get the odd symptom but I guess it's hard knowing which symptom is caused by which condition.

If you have any questions I'm more than happy to answer as well as I can.

[Paul_Howard Partner LUPUS UK]

Hi Sarah13802 ,

If you do want to read more about intracranial hypertension, the NHS Choices website has reliable information. You can access their page about it here - nhs.uk/conditions/intracran...