Intracranial Hypertension

Has anyone been diagnosed with this as a result of lupus, please? If so, what tests confirmed the diagnosis and who has done them?

I've been having trouble with vision in my left eye that comes and goes but all tests done by ophthalmologists are apparently normal. I'm on ciclosporine which is known to sometimes cause intracranial hypertension (pressure in the brain) and that in turn affects the optic nerves. My optic nerves are fine at this point but Id like to catch this early if I can.

Lupus could also cause this, hence my question. Thank you.

12 Replies

  • Please could explain your symptoms as I'm having vision problems too xx

  • I have blurry vision in my left eye at the periphery. The central vision is fine but I feel the edges aren't. My eye hurts and I get headaches in my left side of the head.

    Any visual disturbances should be checked by an ophtalmologist, lupus and the drugs we take for it have a way of impacting eyes.

    What symptoms do you have with your eyes?

  • Have you been tested for APS/Hughes syndrome often associated with lupus,and can cause eyesight problems

  • I have been, several times and so far I've been negative for that. I don't have many headaches, which is why this one is worrying to me.

  • Hi there.

    I have a APS with some lupus overlap symptoms. During the diagnostic process I was diagnosed as having intracranial hypertension. The main way that they can get a firm diagnosis is by doing a lumbar puncture. This will show them if the pressure is raised. One of the most common symptoms is swelling or damage to the optic discs. Headaches are also increasingly common.

    Thankfully my eyesight has been ok and so far I have dodged any meds for it. I just have to try and manage the head pain.

  • Is your hypertension continuous or on/off? I've had a similar episode last year again in November. It lasted almost 3 months and by the time I had a lumbar puncture (for something else) the pressure was fine.

    Other than few short episodes of blurry vision this year I've been fine until now.

    I want to stress that I haven't been diagnosed with it so far. I've just been checked properly by the ophtalmologist and he is assured that it isn't IIH because my optic nerve is fine. However, the peripheral vision blurriness is still present and he can't find a reason for it. I'm just thinking whether It is IIH but in an incipient stage. And whether I should do any further tests. My previous experience of a lumbar puncture was dreadful and I still have pain in my lower back 9 months later.

    I've just stopped the ciclosporine for a week to see if my eye improves I its absence. Lupus is something else, huh?

  • Sadly the only way to check intracranial pressure is by lumbar puncture. In the absence of raised pressure, headaches, and swollen optic nerves it is very unlikely that you have this.

    It's not generally something that comes and goes and the only way to reduce pressure is to have the fluid drained during lumber puncture or with the help of diuretics.

    Are you under a neurologist too? Perhaps if your ophthalmologist is unable to find any problems with your eyes a neurologist me be able to help. They can do a visual evoked potential test to check the visual pathways.

    Hope that helps.

  • Also is an mri a possibility. This would show any brain lesions etc that could be causing problems with your vision.

  • MRI early this year was normal, visual evoked potentials in February 14 were also fine.

    I think it is the drug, these symptoms started seriously once I upped the dose of ciclosporine. Including the difficulty in opening me left eye in the morning - really scary.

  • I purple top , photosensitive and white lights the appear randomly, I have anxiety too and I thought having lupus was scary but this is ruining my life, iv started to notice all sorts wrong with my vision I dnt no if iv always had these things and never noticed or that I'm hypersensitive to everything or I have something wrong with eyes or brain, I've had eyes checked 4 times and paid for a private MRI because in march I was beside myself with worry, no one has a explanation bar optical migraines without pain,I'm not convinced and I going back to the eye clinic in dec as I have new symptoms, I hope you get sorted, it seems like one thing after the other for a lot us on here xx

  • The most worrying thing is not that we have symptoms but that all tests show everything being normal and doctors simply send you home with no explanation. And that you know there is something going on but can't do anything about it!

    Good luck finding out what causes your symptoms!

  • You too xx

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