loosemyself, many with IIH seem to have various odd sensations, which can include feelings of pressure and even pain in the eyes and tingly feelings in the face and elsewhere. Since your ophthalmologist has examined you and says that you don't have papilledema, then you may be experiencing some of those off sensations that often accompany this ailment. Of course, changes in vision must be reported to your doctors right away. The fact that you don't have a headache is a good sign and a LP is an extreme measure to take in effort to try to calm down if worried about the IIH worsening. Are you overweight? If so, losing weight is advisable. How old are you? Are your parents saying that your anxiety have caused IIH? If so, shame on them. Experiencing varying levels of anxiety, especially when newly diagnosed or seeking diagnosis, is certainly understandable and even normal. If your parents are saying that your anxiety is causing your eye discomfort and the warm sensations on your face, well, then they need to be educated. Have them read this: http://www.iih.org.uk/images/FRIENDS%20FAMILY.pdf
Take care and check back in soon.

Thanks so much for your reply)) I used to weight 65 kg when i was diagnosed and 32 years old and now i weight 58 kg so i am not overweight at all. No one informed me what to do or my docs. They told me to leave the hospital and continue with my life. But when i searched over the internet i read about strokes and brain hemorrage and i am scared to death my friend((

we have discussed the issue of anxiety before and it seems that the intracranial pressure/IIH is probably causing it. many of us have obstructive sleep apnea which can cause anxiety. this is an anatomical problem, NOT a psychological problem. I agree, shame on your parents for blaming you for being ill. are they bullies? blaming the victim? and I do not understand why your doctors would take you off the Diamox after it worked. why fix what's not broken? you can have many symptoms from intracranial pressure short of the pressure building back up in your optic nerves, and I suspect that is what is happening. I would try to find a neurologist who understands that you may at this point have IIHWOP (search on Pubmed) and still need treatment. if you felt better on the Diamox, why stop it? so many have horrible side effects with it, and you don't mention that so I'm assuming you didn't and would prefer to be still taking it.

I haven't heard anything about strokes and brain hemorrhage with IIH so I'm not sure what you are reading. the best source for basic info about IIH is http://ihrfoundation.org/
the dreaded complication is vision loss. in my family, we don't have optic nerve involvement, but I suspect we have significant olfactory nerve involvement: we all have severe odor hypersensitivity. we get "brain fog" as much or more than headaches. my son and I have been diagnosed with IIH, and my mother has all the symptoms, so this is in 3 generations. as far as I'm concerned, being sentenced to having brain fog the rest of your life is almost a fate worse than death. the neurologists can't "see" this and they don't listen when you describe it. from my perspective, IIH patients are discriminated against because we have an invisible illness. by doctors and by family members. I'm sorry it's starting to happen to you. be as logical and unemotional as possible when describing your symptoms and keep going back demanding attention to your condition.

Thanks Sophia for your reply:-) i hated diamox although it cleared my eyes and paps and still havr no vision problems i can see 10\10 sometimes i get a mild blurry visions for secs. But diamox made me really sick i was in aphasia depression vertigo tremor all over and tingling in head face etc. I still have a mild tremor and tingling though. So i dont freel good with diamox. My docs told me if paps are gone i would stop the med so i did and feel a lot better. The latest symtoms started a day that was hot and felt humidity all over then three days later i felt the warm sensation on the right side of my head and something like drawing in my forehead and eyes...still my opthalmologist doesnt see anything ...no paps no pressure anywhere....is it possibe my ih is up and my doc cant see it? I didnt take this condition well i was in fear anxiety and depression and i still am..happy you understand me

I forgot to mention my mri is clear blood test ok blood pressure very normal

hi, sorry I didn't check in for awhile. yes, you can have IIHWOP look it up on Pubmed. IIH without papilledema. that's what my family has. it is miserable. something about IIH makes us so incredibly sensitive to our environments and to what is happening in our bodies. sometimes it feels like my entire body is going haywire. my heart pounds, my chest feels weird, pressure in my face, feel lightheaded and weird a lot, yada yada. I try to ignore myself if I can, unless there is something I can do about it. I'm a lot better now after jaw surgery and supposedly in remission but I have weird symptoms every day so it's not like we are completely normal in remission. just better. I am satisfied with that, after being so ill I wanted to die.
how are you doing this week?

Ηi Sophia)) Thanks for yor reply)) I got some answers this week..so i do have that weird symptoms..i went to visit my neuro and we talk about that. He told me that i do not need to take pills because i dont have paps and cause they caused me bad things and side fx to my body...also i dont need to have lp unless it harms my vision or the pain comes back. I dont feel headaches i just experience as you said weird symptoms..dizzy spells some times, pain that last for sec in severe parts of head, warm sense on face, pain around the eyes sometimes that kind of staff. I do feel better thought. He also calm me down by saying i aint gonna die from that or the fact that i was afraid of strokes and damages so i feel more calm

OK good. like I said, even in remission, my head is rarely perfect, there's always some weirdness. like there's more fluctuation in the pressure than there ought to be or it responds to changes in blood pressure when it shouldn't. you might not ever feel perfect but hopefully it won't be as bad as it used to be. I take a Lasix sometimes when I feel brain fog and it helps sometimes. I just take it as needed and it works within an hour if it's going to. you could ask your doc about that.