I think your description about the tight band is a good one. I often stress that it isn't a headache (because they will jump to what a typical headache feels like to THEM and IH pain is very different) but rather head PAIN. I tell them that my head feels like a very heavy weight is pressing on it, that my ears and eyes have pressure and pain. Neck hurts too. Talk about the pressure.

This is why it took me so long to get diagnosed. Most doctors don't know what IH feels like. I kept telling them I was dizzy with head pressure.... Like someone was pushing me into the floor, or a brick was on my head. Since I never said headache they diagnosed me with vertigo. Lol.

So I would make sure you say pressure, and pain, and the word headache. Very painful, pressure headache. :)

I tell them it is a pressure that feels like my head will explode, like when you jump into really deep water and try to stay there. I gauge the pain by how many feet under water it feels like I am. 15 feet. 20 feet. I've never been deeper than that without equipment, so that's my worst possible HA.

Mine feels like a giant brain squeeze inside my head plus an intense aching, pressure, my head feels very heavy, it almost always presses on my eyes and they ache, too, sometimes my ears or jaw. The pressure and aching extends down into my neck, back, shoulders but it feels like pain I can't describe plus stiffness.

The rest I think is migraine. Shooting pain through one side of my brain or my eye. A cleaver coming down on one side of my head, etc.

Thanks for the ideas. I have another appointment with the neuro tomorrow morning...I know my pressure is up with the band across the back of my head then pressure and pain straight down my neck and part of my back....I plan on using these new ideas for descriptions if I can. How do you explain when your vision is more than blurry but not double, just everything has extra borders surrounding it? (Does that make sense to anyone besides me?) Beyond that any suggestions on questions for the doc I may not have thought to ask or ideas to get this pressure down quick?

Thanks again,
Kristena

The phrase I used was "it's like my head is in a vice, and someone is constantly turning the vice." My neuro said to me that is one of the best descriptions that he had ever heard.

If you want a semi-funny description... I used to say it hurt like a mother.... Then I realized it doesn't hurt like a mother, it hurts like a baby going through a mother, having their head squished in through a small space. - My friends usually get a better picture of the pressure I feel being put onto/into my head at that point. :)

I got this from someone else here, so it's not original to me but it sure fits... I describe my vision as kaleidoscopic. I don't see a straight, sharp, clear image of anything and there are weird extra borders to things that tend to move like when you turn a kaleidoscope.

I was lucky to have something to compare it to. I had a craniotomy in 2003 followed by a period of brain swelling. At my worst, my IIH felt like when my brain was swelling. It was like lightning bolts of pain down my body, with intense pain in my head and eyes that hurt to move them. That got their attention.

The way I described it to my neurologist was it felt like someone had a choke hold on me, but I could still breathe, squishing everything into my head.

Yesterday was one of my worse head pain days and I have a shunt but it felt like there was a hugh weight on the right side of my head pulling it to the right. It felt like the right side of my head was bigger then the left. Usually it feels like a tight tight heavy hat on my head. I know what you mean. they want you to point to the spot that hurts the most. I kept saying you don't understand. there isn't one spot that hurts more then another. It hurts all over.

Thanks for asking this question, I just got diagnosed and I'm having a very hard time explaining it to doctors as well as friends!!! Several people below have descriptions that sound just like I feel. The deep water description is great!

So to add my own experiences building on what others have said - My started as a wierd painful feeling that seemed to be on the outer part of my skull. It felt like an extreme sinus headache, with the sinuse like pressure, but on the outer part of my head. It had a strange sensation I like to describe as feeling like I have some type of ICY/HOT rub on my skull under my skin. It a heavy feeling, this pressure icy/hot sensation and stiffnes radiating down in my ears, jaw, neck, shoulders. I now get stabbing pain behind eyes (I think this happens when the pressure is high against my optic nerve). The sensation now moves around my head throughout my day.

And the vision descriptions about extra borders and the kaleidoscope are both great! No one has understood when I said - "no, it's not double vision, but it's like my vision won't lock in" and the Optomologist said my eyes were fine! I still can't read anything close and it gets worse as the day progresses. He told me that maybe I'm just getting to the age where I need reading glasses and it happened at the same time as my IH. I want my money back, what a waste!

Cheers to better descriptions and understanding medical professionals!

XXX

My vision is often like either seeing underwater or through fog at night. Underwater is a special kind of blurry - it's not wavy. Think fog at night when you look up at a street lamp, the blurry halo around it. Sometimes I also have outlines of the object moving outwards in waves, or lines going up and down on old TVs.

P.S. The dr's say my vision is fine, too. No papilloedema. My neuro says it's the nerves in my brain being squeezed.

Wow! Thanks so much for all the help with this! I'm on day 5//6 ( I can't remember which right now in the hospital and have my phone so I can get on here when my vision is clear enough to see my phone.... The description reminder to use pressure and pain has been great! I've somehow remembered those and been able to say those to the doctors in a way that has made sense to them. They have a mannitol iv medicine they are giving me every 8 hours, along with a lot of other meds, but the pressure is still there...uggggg. Is it too much to ask for it to go down to a reasonable level so I can function????

Thanks again,
Kristena