ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: goinbatty on September 09, 2007, 12:46:46 pm
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So far, I've only had minor balance issues mainly when walking in the dark or when tired. Not enough to bother me. But yesterday I did a lot of yard work in the heat of the day. Today I feel foggy headed like after a few glasses of wine or something. I've had plenty of fluids so I doubt it's dehydration. Just checking to see if this a common occurrence with ANs. Guess I'll just use it as an excuse to be lazy today.
Thanks
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That feeling is what drove me to one doctor after another trying to find out what was wrong with me. It has lasted for almost three months now, but is getting better. My docs say that is have something to do with the tumor being attached to the balance nerve, but that after time it should get better. he says sometimes it takes several months for the brain to compensate. Now I have good days and bad days.... more good than bad now, so I guess I'm adjusting. I know its a horrible feeling and very hard to explain to people. To me it feels like I went out and really tied one on! It does get worse when I'm really tired or stressed, so you're yard work in the heat could have alot to do with it. Hang in there!!!!!
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Hi
I get this foggy feeling since I've had my GK. It comes and goes. The other day I told my aunt that I was feeling out of it. It is so hard to explain, but yes..sort of "out of phase" (that's from Star Trek, when Capt. Kirk was caught up in a place where he was slightly out of phase with the normal world, and was sort of floating around until they figured out how to get him back - shows how old I am!! ;D) Weird, isn't it? Just kinda like we could just float away like a big Macy's Thanksgiving Day Parade float. I'm thinking you'll know what I mean. :D
Hang in there and on those days tether yourself to something!!
Understandingly,
Sue in Vancouver USA
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Yep. Thick-headed....inebriated....out-of-kilter....wobbly....woozy....my vestibular symptoms aren't debilitating, just really annoying. (Don't we all wish feeling drunk was as much fun as other people seem to think it should be?)
I'm 2 years post-CK. I don't think my balance has improved much, per se, but I'm lots better at anticipating situations that could be problematic. I hold handrails now. Try to be aware of the path my feet are following through the house. Wear a hat or sunglasses outside so that my pupils don't constrict quite as much in the sun - allows for more visual input to keep me upright.
Most of the time I'm not so conscious of the disequilibrium anymore unless I'm tired or stressed, when I know I have to exercise more caution with stairs, dim lighting, and that bane of my existence - filing cabinet corners.
(Now, tinnitus and brainwreck - that's a tale for a whole 'nother post, lol!)
aa
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Thanks for all your comments. At least now I know I'm not nutty....in that regard anyhow. I crashed yesterday for the most part and feel better today but still not normal. Still leaning toward CK and with the increasing symptoms over the past few months, guess I'll pursue that sooner than I anticipated. Just waiting for my insurances changes to go into effect next month. I wish I could have taken care of this as in yesterday....
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AWE ....... you don't know what a relief this is to hear that I am not the only one experiencing this ........ this week is especially bad as I also have a cold :( do you also find that you at times are 'tongue-tied' - I hate that the most ...... I know what I want to say but it sometimes comes out wrong.
I am taking a B-complex vitamin and Omega 3-6-9 - which seems to help with the 'brain-fog' ....
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Tongue-tied, yes. Not all the time, but when I'm escalating into that verbal playing field where I really need the big guns - my words fail me. (some family members apparently deem this a blessing ;) )
Does anybody else find themselves stammering when they're overwrought? I never did that before either. I mollify myself by declaring that my brain is too busy keeping me vertical to play charades. Like everything else about this adventure, it is what it is.
aa
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I am sooooo glad it's not just me gettin' old. ;D My concentration is awful as I'm so easily distracted. On my good days I feel thick headed and slow. I'm contemplating surgery. Does your concentration/sharpness come back?
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BGWBT
My ADHD symptoms disappeared after surgery - to be replaced by fatigue and some balance issue and SSD. Something’s improved (handwriting tenfold) ... others things worsened. (balance, fatigue, vision in left eye etc)
I am only at 3 months post op ... so I am not sure if I am giving the accurate longer term picture. I can however concentrate better post op. I have also nixed caffeine from my diet. (Minus the Halloween M & M's I had to get the contrast metallic taste out of my mouth post MRI - today)
Question...
Are you getting 7 consecutive hours of sleep a night?
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Yes, I'm trying to get at least 7-8 hours a night, and try to sleep in on the weekend. (Minus wandering around the house at night worrying.) I do feel like the last 5-6 years my 'sharpness' has declined. Since my work is heavy reading and analysis - this is not good. Had been feeling it was just because I work 50 hours a week and am raising two small children by myself, but maybe the AN does have something to do with it. I've also seen where some patients have eyesight that has been disturbed, yet have changes in their eyesight for the better after surgery. Now that I've gotten a diagnosis I'm seeing mild symptoms that could have been present off and on for some time.
Anyway, trying to sleep well, walking, lifting weights (until surgery), in general just trying to take care of myself (and trying to keep in mind I am not Wonder Woman.)
Thanks for listening.
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Thanks to all you guy's feedback this is such a great site and such a relief to know it not just all in my head...Ha! ;D I have also been experiencing the "foggy head" ??? ??? symptons for a year now, along with not being able to focus and express myself verbally like I used to and these things are essential in my line of work. I am also having problems typing correctly what my brain is thinking, mispelled words, leaving letters and words out, etc. Has others experienced this or other mental symptons? What do the doctors say about these symptons improving after surgery or radiation? Please let me know these conditions are going to improve. I am still in W & W mode and researching so still not sure which way to go on treatment. Need some good news! Thanks for any response in advance. Janice
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Yes, I have had some of the same things going on for many years, but I have always put it off to getting older and/or medication that I take for a mood disorder. Sometimes I feel really sharp and on top of it, and then I feel like my IQ has gone down 20-30 points. The spelling is the worst I would have to say. I have consulted a dictionary more times than I ever have in the past even for simple words. I get foggy sometimes, and I have recently had times where I thought I might faint. Could be that all of this is just normal, and I am trying to put too much off on the AN. But, I believe all of you so don't think I am trying to downplay anything.
Nancy
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Yes, I've had that feeling now for 8 years. I explain it as feeling like I'm not totally in my body, like I'm watching everything as if I'm in a movie. When it gets worse, it feels like you described, like being drunk but without the stupor.
Since receiving CK treatment 9 days ago, this feeling has been heightened. I'm hoping it will decrease over time. I think it's due to the vestibular nerve being damaged.
I find that walking a lot helps. I think that's because my brain is forced to compensate for balance being screwed up on my AN side (using eyesight and propioceptors to establish proper balance instead of relying so much on vestibular input). I also started putting cold packs on my forehead and the back of my skull (lying down) this past week, whenever I'm particularly dizzy or fatigued. That seems to help, although it could just be the fact that I'm resting that's making me feel better.
It sure sucks, but at least you have company. :)
Best wishes,
Tumbleweed
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I am so glad to hear this from you all. I have been feeling like this for several years now. I feel like I'm invisible and just suspended watching the world go by. Sometimes I catch myself just sitting in a stare. I probably make other people uncomfortable like I'm staring at them or something but my mind feels so foggy like I'm not there at all, not sure where my mind goes. ??? I also have trouble getting words out and my memory is terrible. I had thought this was probably age related but since reading this maybe not...The constant tinnitus doesn't help with the feeling either. Just this steady ringing....Hard to explain but hope you understand. I'm also having the trouble with typing, letters right but in the wrong place, have to retype alot. Glad to know I'm not alone in this. I type all day at work so this is very irritating. I am having my second MRI this week and also seeing the ENT and having hearing checked. 6 months from diagnosis and I'm praying it isn't growing. Thanks again for your comments and it's nice knowing I'm not alone.
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Ditto to all!
I have been in spelling bees all through jr high and high school, so I know I know how to spell!! It is aggravating to have to get the dictionary out, go back and fix each mistake. I have a hard time remembering which words have i before e. I sometimes can't remember words and have to describe what it is. I feel like I'm playing on the old gameshow "$20,000 Pyramid".
The balance and foggy head feeling starts at dusk. Needless to say, I don't get out much anymore. During the day, I can drive, at night I'm a mess!!
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Interesting that a lot of us here have problems with spelling and finding words. I find myself looking for some common sayings or words, and I often find myself asking others (usually people I feel comfortable with) what is it I'm trying to say or what is the word I am looking for? I asked my psychiatrist about this once, and he said it could be my medication. I have always thought he was right, but it makes me wonder after reading this. I have a theory also that I have problems with words when I feel stressed because sometimes I feel on top of it. Who know? These ANs are a "head trip".
Nancy
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I'm 9-10 weeks post op and my dizziness and foggy head has increased the last week....I think it's been a combination of a cold I've got and the weather where I am. I notice that when the humidity and heat are up....I'm all over the place with my balance and my head is not so clear....
Melissa
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I am having my second MRI this week and also seeing the ENT and having hearing checked. 6 months from diagnosis and I'm praying it isn't growing.
Glenda -
I'm wondering how things went with the ENT. Can you give us an update?
It's probably a little early for the results of the MRI, but I just wanted you to know I'm thinking about you and hoping the results are good.
Jan
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Hi Jan
Thank you so much for caring! I got really good news! The growth over the 6 month period was only 1/2 mm. I am going to stay in the watch and wait group. Since I was told there was little to no chance of keeping my hearing due to the location, I can now have time to enjoy the hearing I have for awhile. I am going to send my MRI to Dr De La Cruz at House for his advice. Due to what I have read on this forum, I am guessing he will advise that I can wait a year before having another MRI. As far as my hearing, it had worsened, but only slightly so I am happy with the results. We have planned a vacation to the mountains in Gatlinbug TN for November, I will celebrate my 50th birthday, (don't know where all those years went). Inside I am only 25. ;D We did not want to plan any type of vacation not knowing if I would have to make a decision on surgery. So we can now look forward to a new granddaughter coming by the 1st of October and then a nice vacation in the mountains where we can relax by a burning fire while it is cold outside. The temperatures here are in the upper 90's and low 100's and I am so looking forward to some cooler days. 8)
Thanks again for asking!
Glenda
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Wow, Glenda, that sounds great! Enjoy!
Steve
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Glenda -
I'm so glad to hear your MRI was good! The new granddaughter on the way and your upcoming vacation sound wonderful too!
It's great to hear that things are going so well for you - I hope that continues :)
Thanks for the update,
Jan
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Hi Glenda! Good news! I`m W+W also. You never know inf an AN will stabilize. There are some on record which do not requiring treatment and with yours as small as it is with minimal symptoms at least have this option to give that a chance. I wish you the best! Mickey P.S. I`m in the same boat
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Hi Mickey!
Would it not be the "most Wonderful thing if our AN's decided to stabilize". That would be Great. Good to hear from you and I'll be watching your progress too. Together we'll all get through this :)
Glenda