Head ache 24/7, brain fog, pressure behind eyes, ... - LUPUS UK

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

Austin2323 profile image
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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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MaryF profile image
MaryF

I replied to you on your other post. Please get yourself and parent to look into this condition. Hughes Syndrome or otherwise known as Antiphopholipid Syndrome, another paper here, it is often missed in diagnosis. If undetected will cause an unremitting migraine/headache which is not relieved until perhaps aspirin and anticoagulation. One test, to have a medical trial of this, if it is the case the relief is quite obvious. Professor Hughes himself works at London Bridge Hospital, The London Lupus Centre: uptodate.com/contents/idiop...

Good luck. Mary F x

Cann profile image
Cann

I get this, but eat lots of grapes and bananas as they seem to help. I cannot take aspirin - caused bleeding in my gut. I get it after eating too much dry/protein or dehydrating foods. I have to be so careful as was diagnosed with thrombocytosis, but blood tests OK last time.

lymelife profile image
lymelife

Read about Lyme disease..I had the same symptoms and many more for 7 years before I finally got a diagnoses. It will make u feel crazy

nofear1980 profile image
nofear1980

I've had pseudotumor cerebri since 1998. I understand the pressure. Have you seen an eye doctor? I am on Diamox which relieves fluid from the brain and helps with the pressure. I also (about every 4-5 months) get a spinal tap to relieve the pressure from my head and that is instantaneous relief! It sounds worse than it is. Good Luck! Victoria

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