Hi Everyone,
I am new to the forum...I was diagnosed with IIH in 2006. I have Papilledema in my right eye, which I have found out is rare that is only on one side... Lucky me!?!? My symptoms first started one day at work when it felt like I was being stabbed behind my right eye. I called my opthamologist and he couldn't find anything except for swelling of the optic disk that had been there for several years.

After the stabbing pain I developed a facial tic that was across my right cheek, which I later found out was from the pressure restricting the temporal nerve. I was referred to a fabulous neurologist. She suggested a lumbar puncture to verify her diagnosis. After several tries and 3 doctors they finally got into my spine, my open pressure was 355, doctor said no wonder you have a headache.. LOL. At this point I was placed on Diamoxx... Did I tell you that it took 8 months to diagnosis and I had been on every narcotic known to mankind and nothing would touch the pain.

For the past 3 years I have been seeing a neuro-opthamologist that is 400 miles away from my home. This traveling back and forth uses up all of my vacation time at work, so no vacations for me just doctor's appointments. The longest migraine I had was for 9 days, I finally gave up and went to the ER for a migraine cocktail, which worked until the meds wore off then back to headache. They were concerned about the Diamoxx causing issues to my liver, so they recommended I get gastric bypass. I had the bypass surgery in July of this year and after I dropped the first 40 pounds the constant headache went away. It was a miracle... I hadn't known a day in 4 years that my head did not hurt. I still get an occasional migraine and have to sleep it off. I am just releived that the constant headache is gone. I can handle a migraine once a week.

The thing that bothers me the most, since people can not actually see something physically wrong with you they think you are ok. No one understands why you are so tired and all you want to do is sleep or why you don't want to do anything. I remember once I was in the barn cleaning stalls and my dad was there... the next thing I know I am on the ground because a sudden attack come on. It's scary when that happens. Well, that's my story and I'm sticking to it............

Tracy D Sullivan

hi I AM MAX I HAVE IIH WAS DIAGNOSED IN 1994 , LOST MY SIGHT IN RIGHT EYE IN 2007, STILL GET HEADACHE, DISSNESS, I TO LOSTS WEIGHT BUT STILL IN PAIN , I HOPE YOU WILL NOT BE LIKE ME.
AND YOU SEE THE LIGHT THAT THE END OF THE TUNNEL.
WISH YOU WELL, HAPPY NEW YEAR. MAX

Thanks Max... So far so good but only has been a few months. I am so afraid they will come back... Happy New Year to You as well.... Wishing you a day without pain.

Welcome to both of you,first, I apologise for the delay in replying, I totally understand where you are both coming from. It's a very hard and ebilitating illness, and as you say people just don't understand how it affects you, and changes your life. The best way of trying to get them to understand is to give them as much information as you can, print some off and ask them to read it.

Then take it a day at a time, and try to learn what your body's limits are, by keeping a journal and noting how long it takes you to do something, what effect it has on you, how long into doing something do you get tired, do you get a headache or other symptoms. By doing this, it will help you to adapt to doing things at a pace your body can cope with, and in time you'll be able to build up on the amount of things you can do.

We have some helpful printouts and advice in our IIH Helpful Coping Methods sections too.

Feel free to PM me and please remember we are always here for you.

I was diagnosed with IH in feb 2010. I totally understand what your saying how everyone thinks that you feel ok because you look ok because it totally is not the case most of the time. Even my own mother in law said that to me, well you look just fine as my head feels like it's being split in two. I had a lp shunt placed in August 2010, and I was doing ok until about 2 weeks ago the headaches are back now. I am talking diamox as well and percocet. It is great that this website was created so that people just like you and I have someone to talk to because that is all we need sometimes I think is someone to understand us with this confusing disease that we have!