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Confusion, Disorientation
I have noticed that I feel confused alot lately and disoriented. I have trouble typing on my keyboard, trouble writing (like I lose my train of thought)...My hands don't seem to match what my brain is (or isn't) doing...I feel disoriented like when I doing anything, as if I have dementia....(more so than usual! giggle!!!). When I'm driving, I don't feel safe...like I have to try especially hard to concentrate. Anyone else experience stuff like this?
Best Answer
i had a bad spell yesterday where i was fine and then all of a sudden i was totally disoriented i could barley talk and what i did say made no sense my hands wouldnt work and i started shaking sooo badly. then a migrane came on. this scared me so i went to the er bc i didnt know what was going on and the er dr was a real hoot told me i was a drug seeker and that i did not have chiari malformation after doing a xray! I am hernaited to a 9 with csf obstruction. also have any of you ever "felt noise" in your head like thats the only way i can explain it its like my ears are muffled and every single sound i can hear and feel inside my head! Like it echos 100 times or something??
WOW!!! How do we pay these costs up front???? Credit cards? Loans? It's totally unbelieveable, isn't it? Everytime I think, wll, I can just live with this...I have another bad "Chairi Moment" (I had one last night...Pain and pressure at the base of my skull that I was in tears...) and I realize that something is still very wrong and I need to get checked out! Hope your feeling better too! Hugs and kisses!!!
thats exactly it like the ocean but muffled and soooo loud its like i can feel every step i take in my head! and yes er was a major jerk..i also have bc bs and i am having to pay all my cost up front! its ridiculous! i hope all goes well and you start feeling better
My appt with Dr. Rosner is May 12. I have been round and round with my insurance co...we have BC/BS...Before they will approve a PPO waiver, I must have the consultaion and get from him EXACTLY what tests and surgeries he will perform. And they inform me that what the waiver will do, since he is non-participating, is to reimburse me at a higher rate after the insurance is filed. In other words, I have to pay for anything "up-front" and then submit to Insurance for reimbursement. WOW....This could be a bunch of money...Hopefully we can do it...That is if the waiver is approved. The insurance co comments were like, "well...MRIS and CTs are not "unique" tests...they are things that you can have done in your area". My thought is that Dr. R will spot a problem that the Drs here don't see, and that the insurance co will say that he goes against their "consensus"...and not feel that they should grant me a waiver...Then what? What I mean is that he may recommend a certain surgery for example, and the insurance co will say that my NS here is capable of doing that...but if my NS here is "capable" of doing that...I doubt that he will believe what Dr. R says and refuse to do it. Not that I would want him too!!!! But I think you know what I mean!!!!!!
Thanks for including the depth percetion issue...I forgot about that! Whether it's the car or my body in relation to external things...YES!!!! Really difficult at times...I find that I have bumped into things much more lately...and it's definitely depth perception....I usually am not having a vertigo spell at the time.
I am on one new med...Carbatrol for the facial nerve pain I'm having...But if I'm remembering correctly this stuff was going on before I started that. I know exactly what you describe of the feeling of not really being here is like!!! Like everyone else is here and I'm an "observer" of some sort!!!!!!!!!!
11 years?????? OMG!!! I know what tou mean...more than one person speaking at a time...supermarkets, restaurants...I am starting to wonder if it is indeed the restricted CSF flow! I haven't actually been tested for that...My NS says by looking at the MRI, there shouldn't be any...I am now at a 17.mm herniation...but the length of the herniation in itself doesn't indicate a problem. My NS at Duke wanted to do an LP to check CSF flow...but I read too much about it and decided it was too risky for someone with Chiari.
I know what you mean about getting lost! I can be somewhere that I've been a hundred times and realize that I don't have the foggiest notion where to go to get something that I know perfectly well where it is...Like you said at Walmart!!! The lights seem to get me too! I was at lunch the other day with 2 friends and couldn't seem to keep up with the conversation...I find too that on occasion, certain words seem to come out of my mouth sounding like gibberish...I can't seem to formulate thoughts to speak like I used to!
The noise inside my head? YES!!! It's weird...kind of like a "white noise" I would cal it...almost like ocean waves, but muffled!!! I can't believe what the ER Dr said...What a jerk!
Yes, I get this too...though I found not as much after surgery. What triggers it now is two things: medications that make you drowsy and when I have vertigo spells. I can't remember, are you on any new meds? Sometimes that can trigger the feeling. When I get vertigo (for whatever reason) I get like that really bad, everything is moving and spinning and I just get this feeling of not even really being here. It's not fun and usually my hands won't cooperate with typing and my mouth won't cooperate with speaking!! The best thing is just to take a nap if you can!!
Stormy
Stormy
I know exactly what you mean and understand what you are talking about. My whole cognition is much worse when I am tired and have done too much. Like there is a disconnect from my brain to my hands and to my legs. Then to my mouth. I trip over my tongue and sounds like at times I speak in a foreign language. Today I even got lost in Walmart. Been there a thousand times and just became disoriented. I think alot of that has to do with fluorescent lights though. They kill me. The sunglasses help with that but it is hard to shop with sunglasses on all the time. I hope you feel bettehen is your appt with Dr R?
COMMUNITY LEADER
Yes this is a real issue for all of us.....even post op, I am terrified to drive as not only did I have this moments of confusion, but I also have issues with depth perception too....I find that I can still get disoriented when I am tired or do too much.
"selma"
This is one of my major symptoms and has been with me for the past 11 years getting progressivly worse.
I sometimes cant coordinate to eat and am petrified of driving now, writting is difficult at times and since November with increased physical activity it becomes worse sometimes flooring me for days at a time. Rooms full of people with lots of conversations going on make me confused and disorientated and supermarkets do the same.
I feel trapped in my own body and explain it to neurologists and neurosurgeons as feeling totally and utterly drunk as a skunk all the time without having a drink.
I have 6mm herniation with restricted csf flow.
Niki x x
I sometimes cant coordinate to eat and am petrified of driving now, writting is difficult at times and since November with increased physical activity it becomes worse sometimes flooring me for days at a time. Rooms full of people with lots of conversations going on make me confused and disorientated and supermarkets do the same.
I feel trapped in my own body and explain it to neurologists and neurosurgeons as feeling totally and utterly drunk as a skunk all the time without having a drink.
I have 6mm herniation with restricted csf flow.
Niki x x
i could have written that word for word!!! i have felt the same way for about 2 weeks now i didnt know what was up its my right hand that doesnt want to do what i want it to and i have to try real hard to concentrate on things too..hmmm idk whats going on its crazy and scary...hope you feel better soon
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