Comments on: Papilledema – Pictures, Definition, Causes, Symptoms and Treatment

By: Tina

Tina — Tue, 13 Mar 2012 19:18:13 +0000

I have papilladema too, I take 1800mg of actazolimide a day. I was on 2200mg aday but after a year on this medication iam coming down slowly and the headaches are coming back. I dont have any known problems that connect with this disease. I did loose some vision but went to the doctor right away and got it back. My optic nerves are not normal looking anymore the nerosurgeon said they will probably always look this way. Other than headaches im doing fine now. my drs office has a support group also. If you could find one in your neighborhood or on line it would be helpful to you. I hope you all find the help you need.

By: Trudy

Trudy — Mon, 26 Sep 2011 08:54:49 +0000

Thanks for posting your stories, My sister recently has been diognised with this condition. She had no head injury, no high pressure or any symptons. Just staretd with headaches and blurry vision and losing focus to see. she is in hospital having her tests done today and I will keep you guys posting.My mum have a eys condition. she had both eyes cateract done and after that one eye has lost vision completely, this is due to torn retina and this hapens to 1 in 1000 cases.My sis thought that is happning to her but after going to have eye test, she was reffered to the hospital for this condition. i will pray for you all.

By: Kelli

Kelli — Sat, 20 Aug 2011 18:34:55 +0000

I have Papilledema also…unfortunitely the MRI and the spinal puncture came back normal, although my spinal fluid was a little elevated at the time. I started taking acectozolomide to help with the vision..but it hasn’t gotten any better. The headache is not as bad but I’m still unable to work due to the vision difficulties. I too can not see clearly from the top, sides and bottom of my vision..I hadn’t been to the Doctor in a few years also. I noticed some change in my vision while watching TV about six months ago but thought that my eyes were just tired. I do a lot of reading and I work in a school where I read a lot also. It’s impossible to work if I can’t read. I am the only one that I know that has this disease, for lack of a better word. It’s very frustrating. I’m beginning to think that maybe it has something to do with my horomone levels. The vision is worse in the morning along with the headache. There are days that I feel great and then the next day, the symptoms come back full force..any encouraging words would be greatly appreciated. It’s nice to know that I’m not alone out there.

By: Marie

Marie — Tue, 09 Aug 2011 21:29:41 +0000

I have a Pseudotumor Cerebri in laymans terms its a fake tumor. I went to the eye Dr because I was having trouble with my eyes blurring when i read and I thought it was from just getting older. Turns out my optic nerves were swollen since I havent been to a dr in a number of years there is no telling how long this has been going on. Sadly since I have no idea when it started or how long I’ve actually had it I had started losing my vision the sides and top and bottom. Its not major yet, but I have had a lp, tons of ct scans and been poked and proded enough to feel like a space alien has abducted me (lol) I take my medication daily have lost over 50 lbs and still have the pressure my Dr has no idea what it causing the “fake tumor” he keeps telling me loose the weight loose the weight but even after what I have lost its hasnt gotten better. No i have not had any kind of head trauma Im healthy other than this no high blood pressure no lyme disease so this doesnt make sense. Its scary when you are driving and your eyes blur to the point where you have to pull over and pray for the vison to clear up. I have to keep a sense of humor or I would be in a constant state of depression. I know the vision i have lost is not going to come back I have spoken to numerous Drs about it and they all say the same thing once its gone sadly on my case its just gone. I dont know if telling anyone this is going to help you but just know you arent alone this is something that needs to be known about we hear about diabetes and cancer why not papilledema? just my thoughts from the peanut gallery

By: ARMY WIFE

ARMY WIFE — Fri, 17 Jun 2011 17:25:19 +0000

Okay, lets try this again. I, too, suffer from Papilledema. Your mom has to see a doctor first before determining if its curable or not. I was told since mine was caused by trauma to the head and spine that with medication my vision should come back 100%. please give us an update as soon as you find out the cause to her Papilledema. I’ll keep your mom in my prayers- God bless!

By: ARMY WIFE

ARMY WIFE — Fri, 17 Jun 2011 17:11:32 +0000

I too suffer from Papilledema.

By: KK

KK — Mon, 28 Feb 2011 09:16:50 +0000

My mom is suffering with Papilledema ,she could see some times and some times not. Can it be curable or not .Dr says the opticnerves are damaged some extent.the opticnerves can regenerate itself or not.