Fancy free, I just got up, after going to bed almost two hours ago but cant sleep for eye pain. I was just going to post something similar!

So, I am going to add to your post, if you don't mind.

How come, now that my paps are better, do I still have such eye pain?
Why, am I so sensitive to bright lights, still?
Can , rebound hds cause eye pain? ( That's what they are trying to tell me now, i have rebound hds, but as best as I know, that does not cause eye pain!)
My visual fields are still off, and , it seems, I am seeing a different thing to everybody else.( The screen goes black out with my right eye, but with my left, it stays white.)

Hopefully, someone can answer us fayer, but I am going to see my "good " neuro this Tues, and will ask her as well. Cath.

I'm not sure about visual fields being off without paps.. and in my experience, increased eye pain (when I *didn't* have pain before, was a sign that my paps were getting worse).

Cath: neuropathy is damage to a single nerve or nerve group (in our case, optic nerves) which is usually caused by damage, injury, or long term pressure. It can result in pain, loss of sensation, etc. I think paps can cause damage to nerves which takes a while to heal

Fancy & Cath,

Yes, I am living proof that your vision can be off without the presance of paps. I to day have lost 95% of my visial fields, without papas I might add. Doctors told me I was crazy. They said it was not possible. But it happened. 12 doctors later and a VP and Lp Shunt as well as left OSFN. My vision has slowed in the loss. But no gain.

So pay attention to your body and fihgt against the doctors to get help.

After all this I still have horrible eye pain. Not everyday anymore. But alot. I have sharp pains the shoot throught my eyesm as well as unbarable pressure.

The best doctor I have found is an Optic-Nero. They KNOW about this. And they help. The one I see. Has over 100 pt. with Pseudotumor. She is in Atlanta GA.

Hope this helped. And God bless you both

Marie

MLance

Can I ask who your doc is? I love in Canton, GA and am looking for a doc with experience with IIH. I'm struggling with my current neuro. Thanks for any advice on docs.

Amy

Thanks MLance. I know what is happening with my eye sight but needed some back up before I meet with my neuro. She is my last hope.

My jaw is still swinging open after my vist in Jan of this year, with my Ophth. After having paps for over 3 years, she did a few tests , including the visual field test, and pronounced, me better!
I pushed her on it and questioned the field vision test as I have not once "passed"it. Now, out of know where I am ok?
But lets say that my paps have gone, why all the eye pain, just as you have described.
Life seems to be getting more difficult every day. I am starting to stay at home more as it is easier and safer. Just the other day, I almost got hit by a car as I didnt see it with my lack of peripheral vision,.
This cant be the end of it for me. To leave me like this?
We will see... Cath.

I just read these posts and wahted to cry. I was given the name of a Neuro Optho from IHRF who told me and my 14 year old daughter that her field vision test could not possibly be accurate because there is nothing wrong with her eyes and the loss of vision must be psychological. After a 3 hour drive and $1200.00 worth of test, to have this guy tell my little girl who has been dianosed with Anxiety because of all of this that she basically was making it up was beyond maddening. What is worse is that he works at the Bascom Palmer Eye Institute which is considered the #1 eye hospital in the country and he teaches at the Teaching hospital in Miami. I am going to show her your posts tomorrow so she knows she is not crazy! I can't thank you all enough. I would love the name of the doc in Atlanta.

My dauthters doc said that yes you can have eye pain and visual disturbances without paps. He said that when those occur that her pressure is up at that particular point in time and pressing on her nerves. Don't know if its true, but it makes sense to us.

She had bad paps and now it's gone, but she still gets eye pain and fire flies. But he said not to worry, so we've decided not to .

Supposedly my paps is gone, but my latest VF is off. I wake up every morning with a swollen eye and severw pain all the time. I have started caling in my alien...lol gotta have a sense of humor..

Ihmom, we are in Florida too. We have been seeing a NO at USF, but have an appt. with a closer one next week. My daughter had seen him just prior to getting meningitis and actually started leaking CSF from her surgical wound in his office. He consulted post-op, so now we are following up with him. He is supposedly one of the only docs in the US that is a trained neurologist, then went into ophthalmology, and occular plastics ( he does ONF). He can seem a bit strange but, he is said to be brilliant. One of the doctors I work for his wife is an ophthalmologist and she said this doc is like a Dr House. I hope and pray that's true. My daughter is one that does have a hormone issue too, we have the tests to prove it and some weird thing with the pituitary but no tumor seen. I'm going to ask him if he would ever be open to using Octreotide. As a mom, I just can't take this...wish it was me instead :-(

Well my paps are gone as well .... Yeahhhhhhh...... But I too still have eye pain, some headaches however I do not have any visual symptoms going on. but the headaches sometimes and nausea and eye pain are killers.

Hi Fancyfree,
I would love the name of your "Dr House" we have been to several NO and just cant find a decent one. I love my daughters Neuro at All Childrens but always looking for someone with a little knowledge. Are you north or south of Tampa? How old is your daughter, my daughter Taylor is going to be 15 in May. It would be great for her to meet other people with this disorder so she could have someone to talk to! Looking forward to hearing back from you.
Sonya

I don't have paps, but I have blurry vision and grayed out areas in the corners of my eyes. Eye pain, also. Some days much worse than others, morning is usually worse than later in the day. It was the vision problems that clued my seizure neurologist that something other than seizures may be going on, even though I had seen an opthanologist and didn't have paps. So he referred me to a headache specialist who diagnosed the IIH.