Raised intra cranial pressure - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Raised intra cranial pressure


Hi all, I have not been on here for a while having a number of issues that seem to have taken the limelight ! Stupidly I had not fully appreciated how these might be connected but I would love any advice feedback re whether any of you have experienced similar:

I had a mumps like virus which lead to meningitis two years ago which in turn lead to an autoimmune heamolytic aneamia and was off work for nearly a year. At the time the medics said they did not think this was connected (to APS) especially as i am now 'sero-negative.'

My latest bout has been a similar virus and hideous head ache (not as bad as last time) waking me at night or coming on after lying down. It seems I worked out I must have raised intercranial pressure and got myself referred to neurology for an unsuccessful lumbar puncture and CT scan. This revealed no clots but a meningioma which they thought was not causing the problems. I am waiting for a neuro ophthalmologist appt, then possibly back to neurology.

Questions are - is there anything i can do to manage the symptoms while waiting ? (I 'sleep' sitting up and have increased my (75mg) asprin to twice a day) Should i be pushing for better anticoagulation if they are all connected.



12 Replies


Have they tested you for APS?

If you think you have APS (Fibro may ev be APS if you GP or Neuro do not know about APS).

Many members are zero-negative but still have APS!

If you have APS we have found here that the Neurologists do not "get" what APS is about - too thick and sticky blood.

We need to be properly and well enough anticoagulated and also remain steady in the therapeutical level to avoid further damage cased by embolies and clots etc.

I suggest you read "Sticky Blood Explained" by Kay Thackray. She has APS herself and writes about the different symptoms from this disease. I have it in pocket.

Also look at hughes-syndrome.org/sel

Best wishes from Kerstin in Stockholm

sangje in reply to Lure2

Thanks Kirsten - ~Yes I am an old trooper ! I have (had) a diagnosis from Tommies (2003) but as later on i became sero neg my people up here (sorry I am in Edinburgh Scotland) did not want to pay so was told i couldnt see them anymore. I did get sticky bloody explained -must re read it - thanks.

As i said i dont have an APS specialist here and it seems they are counting me as something different ! But i will persevere and get back to it ! Thanks Kirsten


Hi there, can you remind me where you are located, as you do need somebody who fully understands Hughes Syndrome/APS to fully look into your symptoms, you maybe seronegative now, but this does not mean that the disease has gone away. MaryF

Hi Mary - I think you and i have had some chat before my last episode two years ago when my diagnosis seemed to take another direction- I know you were writing a book on sero negative APS . I am in edinburgh and my heamotology dept are excellent but seem to be focusing on the auto immune heamlolytic aneamia and menigitis side of things . I was so impressed with them when i was seriously ill and I did keep flagging up APS but although i they believe in it - they didnt think I fell into the catagory now. I am reviwed by them and to be fair i have asked to be reviewed after this last thing and they said they would monitor me from afar ( via GP) they phoned the other day to say my tests were clear for the anemia but no more. They are very open so i will ask to be seen face to face I think and push the APS link. I feel pretty crap at the mo - so only so much energy for pushing ! But i will gird myself again -grateful for any other advice S

MaryFAdministrator in reply to sangje

Hi there, yes, life has been going at full speed for me so I had to put the book on hold. Please do remember to take a look at our specialists: hughes-syndrome.org/self-he...

and also get these blood tests done regularly, preferably in the hospital so they do not sit around awaiting collection: hughes-syndrome.org/about-h...

Also get them to look at your B12 as well as the iron, and also your vitamin D, the test for B12 are not that reliable, you may ask them if it is ok to take a sublingual supplement if they are not prepared to dose you themselves? Vitamin D also levels also need monitoring as does your Thyroid.

Please do not be fobbed off, Hughes Syndrome/APS does NOT go away, however you can go in and out of positive/negative testing.


sangje in reply to MaryF

Thanks Mary much appreciated -not my consultant but one of the others in the hematology dept here is on your list of specialists so I think i will ask about getting transferred to her and ask for the tests you suggest. Its a rollercoaster - not for wimps this chronic illness eh ?

MaryFAdministrator in reply to sangje

Yes, and you have a firm grip on the roller coaster, well done. MaryF

Hi Sanj, I would certainly push for another LP ASAP! When I had these symptoms medics thought I had meningitis as I worked in a school. LP fluid was clear but the pressure was off the scale. The cause was sagittal sinus thrombosis. I'm on a high dose of warfarin for life INR 3.5 - 4.


Thanks Debbie - the CT scan was clear so i think that was ruled out -I have to wait for an appointment with a neuro opthalmologist and then possibly another LP trouble is I was so traumatised by the last one I am not keen unless it will change management options. I have thought for a while i should be better anti coagulated so i will think about the Warfarin - not been offered it yet though.

Hello there,

I too have had idiopathic Intracranial hypertension. Thankfully without any damage to my optic nerves. My opening pressures during lumbar puncture were high and I was suffering with chronic daily headaches as a result.

The neuros were adamant I didn't have it but my rheumy strongly believes I did. Thankfully my symptoms have eased after my last lp 2 years ago and since starting warfarin.

The only advise I was given was to lose a little weight, cut out foods and drink which contained aspartame and msg. I was also prescribed topirimate but couldn't tolerate this.

My IIH has only be mild in comparison to a lot of people but remain under opthalmology where I have checks yearly. My current rheumy says she sees quite a few patients with iih alongside lupus and APS.

I hope your neuro appt comes around quickly for you and you can get some relief.

sangje in reply to Tinythepanda

Thanks so much for this - just hearing your experiences helps to make me think i am not going mad and stick to my guns ! I have been suspecting for a while that i should now go on warfarin . It is really useful to hear from you - thank goodness for forums !

APSnotFab, are on Warfarin with Topirimate? If so, how do the two interact? I'm at St Thomas's again in October and wanted to ask about something to help with the headaches and seizures. If this helps with weight loss too I would be very happy 😊

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