It is very tough to wrap your head around . Have you gone to www.ihrfoundation.org ? If not , then go there . Look around and read everything you can. Email or call them and sign up with the registry. Hope this helps. I know that not everyone who gets this is overweight. I think they just don't know everything about it due to lack of research. That's why signing up with the registry is so important. IHRF gets money for research based on how many people are reported to have this illness.

Hi mommies. There is so little we can understand about this illness, for two reasons, they don't know( the drs) and then in turn, instead of admitting this, they fib to us.

Why they say it is like a tumor, which is terribly misleading, and the reason the have change the name fro PTC to IIH, is because it is a very poor example of something that takes up too much space with in the brain. Its that simple.

But the reality is far from simple, as we know too well. When they say "tumor" what they are referring to is the CSF, which , there is too much of. It is taken up the space that should be free, like a tumor, would do.
From this, we have all these symptoms.The same symptoms that a tumor or mass would produce.
Like ,
Headaches,
Eye pain , form the pressure on the optic nerve from too much CSF.
Balance issues.
Nausea.
Memory problems and concentration issues.

If, you were to present with these symptoms, to a dr, the first thing they would think is, tumor. But that is only because it is far more common than IIh.
The only similarity is the , the same symptoms.

I guess, we are lucky, in some small way, that it is not a tumor, as our life might be in danger, or we might need treatment, like Chemo to treat it.

But, equally, we are stuck with the same type symptoms, but they cant fix us. So, which is worse, really?

So to recap; tumor =CSF.
Keep asking questions! Its the only way we are all going to understand this illness and keep on top of it all with the drs. I hope this has helped. Cath

Cath what a great way to explain this terrible disease.

Hi Cath ! Thanks so in essence it is CSF that fills that space,in return as long as I am feeling that pain there is somewhat somekind of build up of fluid causing pressure in that area causing the additional SX headaches,pain,bal. ect.. Is that right ? Thanks again xxx mommies4

Cath, great explaination. When telling someone about her condition, my daughter just tells them it's a liquid brain tumor. Has all the symptons of a brain tumor, but it's in liquid form, not a hard mass. . When her fluid is down the symptons diminish, when her fluids are up her symptons come back. Folks seem to understand that. She got so tired of going into a lengthy discussion and they still wouldnt understand.

Cath-
That is perfect! I've been struggling to try to explain it to people and I'm not doing a very good job of it.
Ihateptc- That's perfect.

You should see me try to explain it to people, I don't know what I'm saying.

Does anyone else notice themselves struggling with word retrieval? I feel like I have the hardest time coming up with the words I need especially when I'm in full on headache mode?
Thanks
Nicole

Nicole,

I joined this site for the very reason you asked your last question here. I was having cognitive, word and language/spelling issues. I clearly remember the first time it happened: My boyfriend and I were eating bananas in our car and I turned to him and said, "These band-aids are good." I could not BELIEVE what I had said. Then, I would say umbrella instead of balloon and so on...when I first told my neuro this, he said cognitive issues were not part of this and sent me for an EEG, which came up normal. ALL my tests come up normal, except for the spinal tap...so, I did some research and found this site. That was the first question I asked. I was so happy to learn that I was not crazy and not alone. I know when my pressure is up because, first, the pain and then the misspellings and language issues. By the way, I am an English teacher. So...this is kind of what I am good at, LOL.

It's nice to know that my language and spelling problems are not just in my head, for lack of better explanation. My family and friends laugh it off with me and try to help me find the correct word. My daughter is an exellent speller @ 10 and helps me with even the most simple words that I could spell backwords at one time. Forget about someone telling me verbal directions, I can't follow them, I have to read them now. I even forget what I was talking about in mid sentence! That is frustrating when another person is waiting for you to finish and you can't remember the subject. I actually failed out of speech class because of this, of course it was prior to my diagnosis.

Guys, something else that might help explain to others about your symptoms.

I explain to people , that when I move , like get up from a chair,I wobble or almost fall over,this is because,

Like a bowl of water, filled with fluid,if you push,gently, the fluid moves from side to side,gradually settling back.
That, is what happens to us, with the extra csf, with in our skulls.
That is why we, "tip" over a lot.

Also, the uneven distribution of csf with in the skull, surrounding the brain, can result in some of the problems we experience.

For example;I now know, that when I forget my words, or forget how to speak( horrible feeling!) its because the csf has pushed over to the left side of my brain, putting pressure on the Broca's area of the brain, with controls ,speech.

Equally, if the scf pushes to the back of your head, this is where balance control is.
I know now, that if this happens, its time to rest. 20-30 mins resting usually fixes the problem, but not always.
Hope this heps! Cath

Cath, Angela, and Pamela,
Thank you for confirming that I am not losing my mind. All of those things happen to me. The stumbling is bad, especially when I don't feel so bad. I'll tell my husband that I'm having a good day, then stand up and practically tip over. It's hard to defend yourself with that move.

I guess the word part is the one I find the most frustrating. I LOVE to talk if you can't tell. I find myself losing track of what the heck I'm talking about mid conversation or mid sentence. Then it takes forever for me to find the words. It makes me feel like I'm losing control of my speech, which is scary.

My Dr. has me out of work, as a special education teacher, for the rest of this school year. I'm hoping I'm somewhat in better shape come September for back to school. I can't imagine trying to give directions or help my students without the ability to think fast.

Thank you ladies for being such a great support system!!
Nicole

Cath , So now I know why my Bal. is off and why my speech and thinking , holding a conversation and spelling is in shambles ! I knew I wasn't crazy just didnt know why these things were happening.I figured it was the IH,I just thought after the surgery things would improve and they havent,I had blood work done and got the results a few days ago,Neurosurgon wants me to see a rheumy.My RA factor was elevated,Vit D is to low,Thyroid for over 6 mths now is coming in just under the reccomended normal.could explain some of my other SX.I've already been told I have Fibro.So was wondering if the Fibro could have been causing some of this. ??? xxx thanks mommies4