pseudotumor cerebri - Brain & Nervous System Disorders Message Board

head · 10-13-2002, 11:29 AM

I am under investigation for papilldema and the docs say it is probably pseudtumor cerebri causing it,I have banging headaches,lack of energy and blurred vision.Anyone got any info or tips?

head1 · 01-11-2003, 09:53 AM

hey anna,thanxs for your reply,i was starting to think i was the only person with this.i am still waiting(since september) for my lumbar puncture and to see the neuro opthalmologist,but have been told it could be a six month wait.ive had a mri scan,flourescene angiograph,ultrasound scan,eeg,blood,urine just about everything going.my field vision showed that i cant see to my sides at all and my optic nerves are swollen,the eeg showed a under average result.Ive had a few visual disturbances that were quite frightening and i get alot of tingling in my hands,otherwise everything else is pretty much under control due to pills and potions galore.I still get sharp stabbing in my head,but it only lasts seconds.this has been going on now since june 02 and i just wanna get my life back,im also on sleepers and anti depressants and have been on the sick since then.They reck ive had this all my life but it has only appeared as i have put on alot of weight recently,i am 32.I looked it up on the net and its apparantly too much fluid surrounding the brain,which puts pressure on the brain.Have your docs suggested papilldema to u??I hope u get sorted soon,its not nice not knowing.take care.

finder · 02-09-2003, 11:51 AM

Hi Anna and Head,
I was diagnosed with BIH (Benign Intracranial Hypertension)during pregnancy in 1997. BIH is also known as Psuedo-tumour cerebri. The headaches are caused by increased cerebral spinal fluid, this also causes blurred vision due to the pressure on the optic nerves, nausea, vomitting, and much more. If you want more details on the symptoms just ask. I am a typical textbook case study. I am 34 and had to give up my post as a RGN Sister in 2002 due to increased problems. If you have this condition, you will find all the tests that you have taken will be 100% ok. The only positive way to detect BIH is to have a lumber puncture and Spinal tap. Only 1/100,000 women suffer with this however I fear the numbers are growing.
I understand your fears at this time, but keep strong, there are ways of easing the pain. If you get a positive result on BIH and want to know more please contact me, even if its just for a chat.

head1 · 02-11-2003, 02:02 PM

thanxs for that finder.I finally saw the neuro opthalmologist yesterday and i get the lumbar puncture next week.The neuro is certain that it is pseudotumor cerebri and pappilledema but as u say the lumbar puncture will confirm 100%.I will let u know the results.I have read plenty on the net but not spoken with a sufferer so it would be good to hear about how u have coped with the condition,meds ect.thanks again for taking the time to reply,take care now.

Wyidelode · 02-17-2003, 08:49 PM

I was diagnosed with pseudotumor ceribri more than 20 years ago. I haven't had the margins ov my optic nerve checked in many years, but I haven't had any symptoms in all these years either.
I used to have "obscurations" when I'd stand up quickly. Lean over to pull the chain on the lawnmower and standing up, my vision would bo black. Never had headaches, or other symptoms. Great Neuro opthal....gut at the Jules Stein Center said it was due to obesity. I lost weight and lost the condition.
My field of vision is still lousy, though.
Good luck.