JT, I feel your pain! Try not to let it get you down. I promise, we have all been there at one time or another, if not there now. And I 100% totally understand about the cognitve issues because I have the same issues as well. (Imagine calling your husband the wrong name! OOPS!!! LOL) I think, however that I, an perhaps you, if you are on meds, can contribute some of those cognotive problems to medication because I haven't found one single med to treat ptc/iih yet that doesn't affect you cognitively yet. Good Lord willing, hopefully, there will be one soon with the ihrf but for now we just do the best with what we have. Good luck and we're always here for you!
Ashley

JT, I thought first before I wrote back to you.I don't want to upset you any further but I agree with you, its my greatest fear.

I know, the odd word here and there is no big deal, everyone does it, but when it starts to increase and you know you have no control over it, its scary.
On a plus note, it could simple be the excess csf pushing on the speech/language area of the brain. Once it moves again, which it will, you will be fine.

I have been sick a long time, with high pressure always. Its never been lower than the mid 30s.
I think, I am now starting to show signs of damage,and it scares the crap out of me.

I know the few things that are going on now, like, my right foot, slipping when I walk, is the message not getting down to the foot. I have asked and damm me for always wanting to know the truth! but yes, it is a form of brain damage. I also have damage done to my optic nerves that cant be fixed.

But, keep in mind my age, 50yrs, which cant be a plus factor.
As much as we lack any real help for today, there is no work being done on the long term results of living with IIH. It is so frustrating!
But my dear friends who attended the IHRF conference did put my questions to them.

Try not to worry too much. Time is on your side as well as drs are really all starting to pull up their socks as to realising this has become a major problem. So many are now being , correctly , diagnosed with IIH, they have to start paying more attention.

You are not, being silly. That is a deep low fear voicing itself. I am glad you posted and not just dwell on it.
We will get there, all of us. of this I am sure. But it is going to be a hard road to get there.
Sending you a warm comforting hug! Cath

Uggg, that subject. I have posted on this topic many times as it is disturbing to me also. The long term, no one has the answers, no one understands as they have a set of criteria for measuring such things, however if there is a different pattern in what thet mark as brain damage they chalk it up to anxiety. However, I feel that we may be a new set of criteria, different parts of the brain simutanously that have not been observed before. With that said, I did get these tests done at the neuropsyiologist, they did note some damage, and the reat was unknow origin, possible anxiety based. I noted, lol, after the LP all was right in my world. Hence, high pressure caused it all, long term, who knows, I hope for the best but somedays, its hard to think positive. Do we have LP's for the rest of our lives as needed, what are the complications of that, who knows as well, is that the reason behind the shunts? Only God knows, and I am hopeful that someone will find a cure before its too late and major permanant damamge is done.

Mary

Sorry fingers not cooperating today, cannt type or spell. I am sure u all understand.

I found this study and maybe this gives up hope regarding the cognitive issues. It does talk of it being resolved after normal pressure is restored:

http://www.ncbi.nlm.nih.gov/pubmed/3716764

Ya, I know all about it...I'm an ENGLISH teacher and now I can barely speak it, let alone think about teaching it to others. And trying to express myself?! I just get all tangled up. Writing isn't quite as bad but I repeatedly misspell words.
Guess we'll just have to GRIN and bear it.
~Elisa

Elisa, One of the best to happen to me was finding a spell checker on my computer! I love it. I had wasted so much time looking words up, and it hurt as the words in the dictionary would blur.
It also can correct my bad spelling from being dyslexic. How does it figure out what I am trying to spell? Its a gift!
Check and see if you have it. I agree, the typed word is so much easier than the written or spoken at times.
At least here, it is not a problem as we all do it and would never judge any one for their poor spelling. Hope you have it to! Cath.

I too wonder what the pressures have done to my brain. I also constantly mix up words and say something completely different than what I meant...and I used to think it was just the Topamax but now I am off of it and sure can't use that excuse anymore. It does get frustrating, sometimes my memory is sooo off and I know if frustrates my husband a little and also worries him. The other week we sat down to eat dinner and I couldn't remember what chair I normally sat in for the life of me - I've been sitting in the same spot for 4 years at the dinner table - OMG what is happening?!
The only advice I can give you is take it one day at a time. I know they do not know alot about what the pressures do inside your brain. I mentioned this to my family doctor last time I was there - being very concerned on how and why I can't remember anything and conversations are very hard to have at times. She said she didn't know about pressures/memory loss in PTC but she said when people have a brain injury that it absolutely is what happens and she said she would think it would be like that also for PTC.
I know its hard, but take it day by day. I just don't think the doctors know enough yet to tell us what to do to remedy this.
Mandy

Thanks guys. I am comforted by your posts, but also saddened in a way because it confirms to me that this disease really does screw up our noggins. I was glad to read the article Angela posted, which for some reason doesn't seem to be showing up on here now. It stated that the intellectual impairments were reversible once the pressures were normalized. Now, there's just that pesky problem of getting our pressure normal, huh?

After going through this the past year, I'm finally starting to recognize my bodies cues and I can tell now when my pressure seems to be on the rise. For me, the cognitive issues seem to come and go. One day I still feel sharp as a tack and then I have a brain fog day or moment. I guess that reinforces the theory in the article as well as Cath's thoughts that the pressure itself is doing something to the brain in that moment, and once it is relieved or moves on, the fog is lifted.

I don't know. Hang in there my sisters from another mister. And, thanks.

Aaw JT I'm sorry you are upset by this, you are defo not making a big deal of nothing!! I was upset in the beginning but now I'm more used to it! I am like a talking thesaurus, I seem to use every other word related to it than the one I have in mind! I even use words that wouldn't usually be part of my vocabulary!

It does concern me what this is doing to my brain, never mind the 40's and 50's, I'm worried about now and I'm only going to be 30 this year. I expressed my concerns to my Neuro and he made me feel a bit better cos he said that the fact that my brain has thought the correct word is better than it thinking the wrong word is correct. For example: you said cucumber but you knew you wanted to say computer whereas, if you were insisting that cucumber was the correct word then that would be more of a concern! I hope I have explained this correctly and no confused you further!

I am going to see a Psycologist in Neuropsycology for cognitive tests to see what damage has been done. They say that they can even tell if some of it is permanant or will revert back when I am feelng a bit better which would be fab. I have put this off as I am anxious about the results but if they tell me that it can go away in time then that would be good news so I am trying to be more positive about it. Maybe you could arrange to have tests done if this keeps up, hopefully you won't need to

Stefanie x

Don't worry, JT...I understand as well, somedays I would say something and to others it wouldn't make sense...myself esteem, has dropped since I been diagnose. Its hard to speak to your loved ones to get them to understand what your going and what your head going through. Sometimes, I rather type what I wanna say or feel, then speak because at times I studder and it takes long to comprehend what others are saying to me and for me to respond back. Even on my job, I would forget what i was train or even how to count change. I too, get scared when this happens to me, but what makes you feel better is knowing that your not alone, you have friends here who understand and are with you and ready to encourage. I am here! ((Big Hugs))

I have a strange word come out sometimes, and sometimes even a strange whole sentence. I don't remember doing it. I just see a strange look on the face of whomever I'm talking to. If they are a stranger they usually walk away pretty quickly. I don't know if this is a feature of IH, Migraine, or seizures. Migraine and seizures both are known to cause this. IH is less researched, and it may still cause it, it's just not documented.

JT, I don't know what meds you're on but, that could also be playing a factor. I am on 2000mg of Diamox a day and am convinced it is wreaking havoc on my short-term memory. It has gotten so bad that about 3 weeks ago I started a journal just so I could remember what happened every day. Partially, because I was tired of losing arguments with my other half because I simply could not remember events as they occurred or at all.*wink*

But, it has turned out to be a very cathartic process for dealing with the fact that my memory is not what I wish it would be. Also, it makes me have less anxiety about things that I hope to remember because I know that my memory is written down for me to look at whenever I need to.

Best Wishes