I hate being sick, i cant sleep cause i'm sick, i cant see cause i'm sick, i cant think, i am in pain...because i am sick, i don't even know if its called sick, sick is something that clears up....i hate when someone looks at you and says , " you don't look sick." LOOK step off, you don't know me! and you have no idea what its like to function while barely even being able to comprehend the world around you because your brain is so compacted by the amount of spinal fluid pouring in on it. let me put your brain in a too small space, ad vision loss and severe headache and we will talk, all while you try to function normally for a day...i know other people are sick too, i know i am not the only one, but this is about me, not them. it drives me insane when someone complains of a headache that tylenol will take away, cause that stuff dont work for me(neither does prescription pain pills, i've tired) , sometimes its so bad i cant even have a conversation that requires minimal brain activity. so after i stumble through an endless stream of uhs, and, and other filler words i just have to laugh and ask someone else to finish the story, but clearly i have my ok days to, and i am able to function sometimes, with the grace of God, i know i am so truly blessed, i am so grateful, praise be to the Lord, i would be no where with out him. but i am still so miserable. i want help, i need help, its hard with no health insurance....i guess i am so fired up today because i had a job offer, but cant function in the proper way, that i would be required to to preform the tasks, and because it was a friend who had just gotten the job and was looking around for girls to fill the rest of the spots on the request of her boss, i couldn't in good conscious take the job, and take the chance of ruining her good thing.
so here are some good things in my life, the things i have to be thankful for
a roof over my head
a wonderful boyfriend
good friends and family
a car
food everyday
Bandit my 2 year old fur baby golden retriever/ german shepard mix , he always knows how to make me happy with his big fuzzy dog hugs
and my newest furbaby 6 week old Rocket my puggle.

here is something i just thought of, so if anyone has read thus far, i have a question about back pain, it may just be me, but i have delt with mild to sever back pain for a while, and me and my mom theorize it could be the spinal fluid moving around, if that is even possible, i don't know lol, but has anybody else ever considered this?? what made us come to this conclusion is with all the xrays and exams i have had on my back, nothing could be identified, all that being before i was diagnosed, all the docs said my back/spine looked perfect and i did notice when my back was at its worse, my head was not as fuzzy felling, just a thought, and something to think about if anyone has felt the same way.

I'm so sorry you're struggling, but glad you're able to focus on some good things! Living w/ IIH can be very frustrating and people who don't live it can't even begin to understand, but it sounds like you do have a good support system..that's soooo important! Of course you can always come here for support and a good shout.

I'm not sure where you are in treatment, so disregard any advice that doesn't apply. Pain medications don't help w/ high or low pressure, but there are some things you can do to take the edge off. If you're having high pressure headaches and back pain (yes, it can be related), then finding the right position can be key. I've found that laying at 45-60 degree angle on my side will allieviate some discomfort..just make sure you're properly supported w/ pillows. I also use heat on the back of my neck and down my spine, and cold packs over my eyes. Everyone seems to respond differently, so you just have to play w/ things until you find what works. There's a lot of information throughout the site and in the Alternative Therapies section. Low pressure can be relieved by laying flat. You really should only have issues w/ that after an LP or if your shunt is overdraining. There are also headaches and back problems that are secondary to IIH, so make sure you're keeping your physician informed.

I'm not sure how long you've been unemployed or what you've tried as far as healthcare, but there are some resources out there. You can try Job and Family Services for Medicaid or Social Security Disability..they don't make things enjoyable, but they do help if you can endure it. If you don't qualify, there are also HIPPA policies that you can get at discounted rates through an insurance company..you should be able to find something in a Google search for your area.

If you're serious about trying to work, look at your state's Vocational Rehabilitation program..in Ohio they help you w/ everything from applications and clothing for interviews to job placement. They assess your needs and assign you a worker to assist you and monitor the entire process.

I hope you find something useful and are at least able to get some relief soon!

Take care,
Julie

Well, the sac that encoumpasses the brain in csf cerebral spinal fluid also encases the spinal chord. That is why lumbar puctures are prevalent diagnostcally and as a short-term treatment. There are then a couple of things that can be going on with your back: you could have excess fluid causing some problems there, or if you shift the weight of your head to to combat the headache, you could be putting stress on a different part of your back, your could be stying in one position too long which can also stress the back. That being said: rest and medication for head pain can also help the back pain.

For me, the biggest problem has become the spinning. Does anyone know hown to make the world stop spinning?