Intercranial hypertension : Hi All,I recently have... - LUPUS UK

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Intercranial hypertension

BellaC79 profile image
5 Replies

Hi All,I recently have had issues with migraines.

I have had two in the past 8 weeks. The first my vision went blurry in right eye and now I have had a Blind spot (scotoma) ever since.

I am currently on hydroxychloroquine and pregabalin.

I am being investigated for idiopathic intracranial hypertension due to the positional headaches. However I am not overweight if anything I'm skinny.

I'm just intrigued to find out if anyone else has had similar issues? I've since read online hydroxychloroquine can cause this?

I'm awaiting a MRI in 4 weeks. As eye hospital have confirmed my eyes /sight are fine All quite concerning.

I currently have had coeliac 11years, small fiber neuropathy 11years and mixed connective tissue disease( sjogrens and lupus) 9 years.

Many thanks in advance

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BellaC79
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Hamptons profile image
Hamptons

my sister who is coeliac and hyperthyroid was recently diagnosed with SLE following episodes similar to this. She is tiny.

She lost her vision during episodes and it could take days to improve. She had not been prone to migraines, and was eventually diagnosed with giant cell vasculitis. It later impacted her swallowing and sight. She is now on HCQ and Methatrexate.

KayHimm profile image
KayHimm

Hi Bella79 -

I can understand your concern. Intercranial hypertension can be serious. I have had signs of intracranial hypertension on a routine MRI. When I later had a severe migraine episode with vomiting, the MRI was repeated as well as vision tests. They concluded the episode was likely not related. All this is to say that the problem is very complicated. Since you have MCTD, the neurologist will put everything together and make a diagnosis.

That is great news about your vision. I wish I could help more. It is just one of those issues that has to he left to experts.

Let us know how you are feeling.

Kay

Betty909090 profile image
Betty909090

Is there a difference between “intracranial “ and “inter cranial”?

Or is it actually intracranial ie within the skull?

Not trying to be facetious?😁

KayHimm profile image
KayHimm

I honestly don’t know. The problem is still a big mystery to me. Will see what I can find.

BellaC79 profile image
BellaC79 in reply toKayHimm

So after my last post and another headache, ended up admitted into A&E emergency CT scan and 7 days in hospital for an MRI. So an incidental finding of an arachnoid cyst and cavum septum pellucidum et verge ( congenial condition very rare apparently)

So the intracranial ( yes it is 'ra' not er cranial) pressure is still persisting but they chose not to do a spinal tap at the time. My eye is still blurry.

Still waiting to see a neurologist this week and a neuro opthalmologist as well now 😮 but no date as yet.

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