I wrote this on the Ramsay Hunt forum that I belong to. It also applies to IIH, I think. My Docs still think I may have had a mild case of meningitis which caused the IIH, or the zoster virus goobered up the exit holes in my head. No way of knowing for sure, I guess. But I had one of those days today. This is the post I did:



I have been dealing with the residual side effects of having had RHS four years ago. From day four to the present, disequilibrium and balance issues have been a daily challenge. My cranial eight, the cochleovestibular nerve, was badly damaged. When I first got sick I had to be wheeled into the ER because I couldn't maintain my balance to walk. For nine days I was bed ridden because everything was spinning so much. Not much fun when you are living alone, in a semi-truck tractor. I have had balance therapy, vestibular therapy, gentamicin injected into my ear and now a lumboperitoneal shunt installed within my body. I have good days, and not so good days.

When the vestibular system is compromised, the brain has to "manually" do a great many things it used to do automatically, like maintain your balance. Then there is the constantly trying to figure out where our body is in relation to the rest of the world, are we slightly tilted? need to lean more to one side or the other???? It takes a lot of brain power to figure this stuff out. Want to make it worse??? Go for a drive (or even a ride) in a car. Your eyes say you are moving but your legs aren't. Your ear isn't inputting, so your brain immediately goes haywire and you get what I have called brain "mush". It's the severe brain fog, Like trying to swim through pea soup. And it never stops. Well, maybe for a brief few minutes, hours or days, but it always is there, just sometimes less oviously. It affects our ability to think clearly. It affects memory (it's terrible when even simple words are hard to spell) especially short term (now, why did I need to come into this room??) but can interrupt long term memory too. To put it bluntly, it makes me feel stupid.

Today I went to a "meet and greet" for new people interested in taking continuing education classes, for pure enjoyment, through Duke University. I went. So now 10 more people know that they should get a shingles vaccine if they had chicken pox, and I have never felt so out of place as I did today. There was retired physicians, a book publisher, teachers, a NYC ad man, and many others of obvious high intellect, and then there was me. Well, after seeing the kinds of people who attend these classes, I realized that this is not where I belong, not now anyway. Maybe someday, if I get my brain back. When I no longer feel stupid. RHS has been a life altering event for me, and there are others who also face daily reminders of what the "new You" is all about. It is a rough existence. I am probably one of the extreme worse possible cases of RHS, except for the guy who is wheel chair bound forever because he insisted on having his CN VIII severed to get rid of the dizziness. Just felt the need to share. This is a real possible outcome of this nasty disease.

That is terrible, I can not imagine being motion sick every minute....

You belong in those classes just as much as anyone else does and more than the physicians (I've met many dumb physicians). I do feel like my brain has been stolen I have always been a reader and writer; now I feel like Im stumbling around my own brain. I can't say the word I am thinking a bit like having something on the tip of your tongue but not being able to get to it. I can't find my feet and I run into walls I didn't see... I am now insisting on being "that" family member, when all else fails laugh at your self right!?!

Thank you Krystyn, but the very reasons why you are troubled about your thinking mirror mine. Yes, technically, I can attend, but so much of my cognition has slipped away that I cannot keep up. I, too, often find myself with the word I'm thinking of on the tip of my tongue, but only those of us that have these cognitive issues understand that. Instead of using the word I wanted, I often use an easier, simpler word which makes me come across as simpler. This is one of the aspects of a disease/illness that is so difficult for others to understand. Losing the ability to readily grasp new ideas let alone relate to others on any sort of an intellectual level is one of the most difficult aspects of this disease I have had to face and keep fighting to accept. This is what keeps me fighting to get better. At times, it becomes a very lonely fight. But I won't give up. You can give me daily headaches, you can destroy my balance, twist my lips and even make it hard for me to drive, but don't take away my ability to think and express myself. I need that one too much. And so I fight, even though these diseases have made me feel stupid, I fight.

About the motion sickness, as long as I didn't move my head, I was fine. The scrambled motion stuff would start just as soon as I moved my head. I spent a great deal of time with my head very still :roll:

The worst part is that these are suppose to be people who understand and I would bet you aren't the only one who has felt that way... Reading the forums when I have a bad day and being reminded that I am not crazy is a unique type of therapy that I cannot find anywhere else. Doctors blame us, like some how we made ourselves diseased, and others think that we should get off the pills and our issues would magically go away. I like to think that someday I will get my brain back and win at scrabble again instead of giving the deffinition of the word I am thinking...lol. If you ever feel like you are less than you are I think better of you even though that is a small consolation prize because I don't really know you...but I'm on your side for whatever difference that will make.