Head ache 24/7, brain fog, pressure behind eyes, searching for help!

hello! The diagnosis I've been given is pseudotumor cerebri or IIH (idiopathic intracranial hypertension). I've had more surgeries that I can count. You can see them on my website here: sites.google.com/site/pleas... I do not have a tumor but I have pain that feels like a tumor (hence the name pseudo tumor cerebri) regards, Austin

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  • Please just to rule it out get tested for Hughes Syndrome, (Antiphopholipid Syndrome) ncbi.nlm.nih.gov/pubmed/844...

    ncbi.nlm.nih.gov/pubmed/121...

    ncbi.nlm.nih.gov/pmc/articl...

    and if in the USA: apsaction.org/

    Professor G Hughes works at London Bridge Hospital: londonlupuscentre.co.uk/

    It is known as Hughes Syndrome and also Antiphospholipid Syndrome. The charity in UK hughes-syndrome.org/

    My children have this, plus Lupus. My son too had permanent migraine! It is now not so bad, but still nasty, but rapidly improved on Aspirin. Please be aware you would need to see somebody who understood the disease, please see the APS Action links to medical contacts. It may not be this, but worth checking out as it has so many manifestations and migraines/headaches which do not react to pain relief is typical. Good luck. Please be aware that often neurologists are not the best with this disease, usually a rheumatologist, and it usually shows up in simple blood tests, but sometimes people can have it and be Sero Negative. At least rule it out. Mary F x

  • I would also suggest that you get someone to check your creatinine levels. These relate to the effectiveness of your kidneys. Its done by a blood test.

    If you have already been advised that you have hypertension, I am guessing that they are already checking. But if not you should raise it. I had many of those symptoms prior to a renal crisis.

    With the pressure behind the eyes you should get checked by a good optician. I know how difficult that can be. I was checked and given a clean bill of eye health. Then finally attended Moorfields eye hospital who identified retinal haemorrhages.

  • Thank you every so much for this support!

    @maryf I am sorry to hear about it

  • I hope you look into it, as sometimes a condition like you describe turns out to be that! Mary F x

  • I suffer with chronic headaches caused by lupus, APS & cns involvement so have some idea as 2 how u feel. People looks at u with disbelief if u say u've been laid up with a bad head. Mine get so bad I'd b happy 4 some1 2 bludgeon me when I've got 1 just so I wouldn't feel the pain any more lol!

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