Sticky Blood-Hughes Syndrome Support
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Raised intra cranial pressure - is it a hughes thing ?

Hi all -sorry not been on for a while but been having various other things so put hughes in the background especially as i am seronegative now - now i am thinking maybe these things are 'hughesie' after all ! Anyway i need a rant after a horrible neuro appt on wed!

After severe headaches worse at night when lying down (nearly as bad as my meningitis last year) Gp finally refd me to neuro who said raised intra cranial pressure -come in for Lumbar Puncture and CT scan.

Hideous day (sitting in a waiting room with day time tv blaring didnt help the head ! ) had what i thought seemed like a complex partial seizure -could have been a reaction to the dye in the ct - facial and arm twitching and felt like i was in a trance - very dizzy and nauseous. Staff disbelieving and then said they thought it was 'nerves' ! Finally had the lumbar puncture -i am good with hospitals and pain but by the time the new F2 doctor tried over 6 times and then got his senior who tried four more times i was trembling, in agony and felt truly traumatised - not least by their attitude. At this point after asking for some feedback the neuroglist said 'its probably just one of those things -the good news was the ct was clear - well apart from the meningioma - and that's not doing anything' !! She seemed to think i had been told about this previously (i hadnt) and that i was wimpish to think there was anything to worry about !

Anyway basically i am asking people for advice about where to go from here - i am to have a follow up consultation so maybe they will tell me more then but i want to be organised with the right questions - has anyone else had any experience of meningioma ? - could hughes cause high intra cranial pressure ? Is there anything else you would do ?

Thanks for listening and sorry to be a moaning minnie !


5 Replies

I have recently read up on hydrocephalus, which sounds as though it's the same thing as intercranial pressure, because there is suspicion that an elderly relative may be suffering from this. I am certainly no doctor and reading a bit on the Internet does not give me much credence. But you might browse the Internet on your own and see if the symptoms there described resonate with you. A more practical approach might be to consult with an experienced APS specialist.


Hi Sanj,

You are not moaning!

I agree with Gina that you ought to counsult with an experienced APS-Specialist!

I have forgotten where you live. Is it in England or the US? Have you been in contact during the years with a knowledgeable Doctor who really knows what to look for. That means that he understand what APS is about. That must be an APS-Specialist. But where to find that doctor? It can be very difficult in the US I have learnt here.

Have you read what we have written about the Neurologists that do not "get" what APS is about? So many of them and also general GPs who have not heard of APS at all.

I can only pray that you will find a doctor who can help you.

Best wishes from Kerstin in Stockholm



I was diagnosed with idiopathic intracranial hypertension prior to my APS diagnosis.

I had several lumbar punctures with high readings but thankfully no vision involvement.

After being diagnosed and anticuagulated my headaches stopped and no further lumbar punctures have been needed. My rheumy who is excellent said she doesn't know where it quite fits with aps but she see's quite a few patients with mild IIH in her lupus clinic. I know of a couple of people who have developed IIh post stroke.

Sadly neuros are just in as much denial with this condition as they are aps. If you have high pressure you will need an opthalmologist to monitor your vision as this is the main complication.

gemma x


Thank you everyone - that is so useful - as i suspected re the link -i am due to see an opthamologist so hopefully that will be a good point of contact Gemma - i actually live in Edinburgh Kerstin and was previously under St Thomas's but my nhs trust stopped me going there (money !) as they said I dont have lupus ! Since then i have had autoimmune heamolytic aneamia and meningitis and the 'fibro' label has come to the fore again as up here they seem v skeptical about the Hughes diagnosis - so have taken my eye off the Hughes ball ! I think i will gather my thoughts and see my GP and ask for an appointment with someone who can review all my symptoms and see me as a whole person ! If needed i will go privately to London Bridge - would anyone have an idea who might be the best person to review me there (given all the above ) ?


Hi again,

Ask your GP to have a referral to an Opthalmologist. They wont do you any harm. If you have the possibility to go to London Bridge privatly, please do that. Or visit the Professor himself. That would help you immensly I am sure!

As i live in Stockholm I can not give you any special name.



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