ANA Discussion Forum
Archive => Archives => Topic started by: ppearl214 on June 21, 2006, 02:16:10 pm
-
Hi all:
curious if anyone here has run into major balance issues post-radio treatment? Dr just prescribed Meclizine, 25 mg/3x day. Knowing I got zapped and whacked a bit harder than some, I'm a little slow going on the wellness rebound, but balance/dizziness seems to be major issue of radio-treatment patients....
Any and all thoughts appreciated.
Thanks!
Phyl
-
Hi Phyl,
So far I haven't had any balance issues to speak of. I get that wonky, spacey, almost out-of-body experience...but I'm not sure that's balance or just what that is.But it doesn't feel like your standard dizzyness. Especially prominent at the mall or big stores. It's very weird and hard to describe.
Hope you are better soon,
Sue
-
Phyl,
My balance was actually better after CK. Because of my AIED flare up this week my balnce is like after about 4 Margaritas. I went to the Mall Saturday and was all over the place. I got a few very strange looks. It is getting better now that I am back on the steroids. I am back to brain fog and floating feeling. Have hit the side of the door twice when walking through it this week.
One thing I have learned is not to look down when I walk. It makes me very off balace. the wife of a man I work with had sever head trama and 2 years of rehabilitation that did very little for her. Her grandaughters ballet teacher offered to hekp her. The main thing is don't look down and practice walking. Also stress the balance issue several times a day. At this point I am turning in small circles very slowly about 6 times a day. It was helping very much until the AIED cropped up again.
Nope, sure not riding the horse now. Will though. Going to Tahoe tomorrow will see what the altatude does to me.
Huggs,
Sandy
-
and just how do you know how 4 Margaritas feel ? ;)
one of the reason's I think I do well is because I had a lots of practice being "off balance" in college years ago :-X
I do a little practice every chance I get .. for example sometimes I take the train to work ... I love standing up and riding the trains bumps and bouces ... Other times my wife I drive to work together (she works a few miles past my office) and we reverse the process after work .. while I'm waiting for her, I walk back and forth on the curb, walking a dui toe-to-toe ... and I do much better looking straight ahead... I look at my feet , I screw up evey time...
-
thanks all for sharing this with me... also threw this out to Dr. Medbery on CK support board. He also noted a low dose Valium (2 mg) as another alternative. Says by low dose, it may help without causing too much sleepiness. I have vailium and haven't had BI's prescription filled yet, as I've also been trying to reach my local drug pusher (pharmacist), PapaPearl to get his insights on it as well.
The term vertigo wasn't used, but I have a sneaky feeling.... oy.
-
Someone posted that they feel like they had something to drink all the time. That's excactly how I feel.
Any ideas why dizziness is different from one day to the next? I thought it might be cloudy days and barometric pressure but the skies were clear today and I had a really bad morning. Thanks for listening!
-
I find that when is clear .. its the worst! ..
we are more dependant on our vision for balance.. and when its bright out, and I cant squint right .. I'm a little "blinded by the light" (who wrote that old song ? for 10 points ;D ) .. and there fore I'm more dizzy!!
-
Bruce Springsteen wrote "Blinded By The Light". Thank you Joef for a trivia fix - I miss trivia night at Bennigan's - too loud in there.
-
Another factor could be from  being tired or having a higher stressed out day.  I know if Chet is really tired,or stress or both  it'll show the next day in his balance.
This could also be why you see changes in balance on different days.  Trying to compensate for balance uses a tremendous amount of energy.  If a person is tired, then this would increase the balance problems.
Best to you
Raydean
-
thank you all so very much! low does "Vitamin V" does seem to help a little bit... so does my cane, which I claim to be a "fashion statement"....
"Blinded by the Light"... Springsteen wrote it? BUT, who SANG it (radio play version)? :)
Phyl
-
OK, as to the 4 margaritas. I was on drugs at the time I posted that. I also find I can't spell when I am on them. All is better now. Back to the balance thing.
I find a good nights sleep helps. Muggy days are really bad for me. About three days of that and I regress. It is hotter than blazes here now and it is a lot better for me than pre-treatment was. Phy, I know you will choke on this one. In 1990 I was hit head on by a car doing 60 mph it did some neck back damage to me. I had the same balance issues then as now. Not, the brain fog though. I went to a very good neurologist who was not a surgery freak. He sent me to do line dances at the local senior citizens center. At that time I was not a senior. I had to count, concentrate, keep some kind of rhythm (not easy to do with two left feet) and not look like a flopping duck out there. There were many 80 year olds that did a lot better than I did. I struggled with this because I couldn't remember when to do what and was always going the wrong way. Six months of this and I recovered my balance and lost about 15 pounds. I still have old line dance tapes I used at that time and now do them several times a week. Any thing you do to music is a lot easier than just doing PT. Try it. You might just like it.
BTW I am back on the horse again. You have to stress it a little even if you don't feel like it. DON"T LOOK AT YOUR FEET!! It's gonna get better.
Hugs and blessings.
-
Hi Phyl,
Sorry I'm late to jump on this thread. Wasn't "Blinded by the Light" done by Manfred Mann? Just a guess!
vjh
-
Hi Phyl,
Sorry I'm late to jump on this thread. Wasn't "Blinded by the Light" done by Manfred Mann? Just a guess!
vjh
we have a winner!!!!!!!!! :D Great job! :)
-
Hi Phyl,
Gayle here, it's been awhile!!
You're not alone---I'm 6 months post GK & stilling dealing w/ a lot of balance/dizziness!
Still not driving or working away from home!
Dr. took me off all medications about a month ago though---felt the valium was just masking the symptoms & that I just need to really push myself & work through it (easy for them to say, huh?!!). I had a VNG test done (where they squirt that cold & warm water in your ear), and they determined that my inner ear "was deader than a doorknob", so now feel I just need to do more & more of whatever makes me dizzy, to get the other side of my brain to "recalibrate" & take over for the tumor side!
I've been doing vestibular rehab & have been given a lot of exercises (if you can call them that!) to work on (that make you dizzy!). They were helping I think until last weeks rehab, where all they had me do was stand on a foam pad, get my balance & then turned on a disco ball-strobe light !!! I never liked those things back in the 70's--now I really don't like them!!!! I came real close to falling flat on my face & loosing my cookies!!! I've been spinning ever since (& cancelled my rehab this week---just couldn't put myself through it again this soon!!!)
So, anyway that's my story---don't know if it will help or not !!
Gayle
-
Sorry to see all the balance issues, but I'm glad I'm not alone! Had my CK in November and had a second MRI in April...just went yesterday to get the results (ok...I know a 3 month lag to get results is ridiculous...but I knew something wasn't quite right and really didn't want to find out... :-\) Since the CK, I have been having diziness - nothing too extreme, more like being on a small roller coaster... Worse is deterioration of hearing...the buzzing is louder and sometimes it's like a big loud cymbal that actually hurts. I just had another hearing test...started to cry during the test...I couldn't make out almost anything she said. My hearing has deteriorated by another 30 decibels. I now only have 40% of my hearing versus 70% a year ago. My AN has gone from 1.5 x .9 to 1.5 x 1.0 in 5 months. Not sure if this is normal or a big deal.
My ENT informed me my AN is considered "large" (this wasn't my impression based upon my prior visits to HEI and my CK facility) and that I most likely will need to have the surgery...he pretty much scared me - I'm not getting warm and fuzzies from him...What has been some of your experiences? I think I need another MRI soon to see if it is growing more or not...
On another note...how do you post a picture to your profile? I tried by creating a "Myspace" site (since it seems to require a web site to pull from), but nothing appears when I copy and paste the web address in the profile space for pics...
THANKS!
-
Hi,
Just read your post---I would definitely get more opinions before thinking about surgery!! They thought my tumor was possibly growing also,(about same size as yours), but after looking closer & other MRI's they think it's just post radiation swelling & that it is actually about the same size if you read it correctly (had several Drs/radiologists read them). They also said they wouldn't even consider doing anything for at least a year after initial radiation. I'd talk to your Neurologist or someone besides the ENT. Also, at 1.5 cm I don't know why your ENT thinks thats considered a big AN!!!?????
Hang in there!!
Gayle
-
Thanks Gayle!
My thoughts exactly...don't know why he thought it was "big" - HEI and my CK Docs referred to it as "small" - making my confidence in this ENT drop... Plus he said he'd never seen a case of GK or CK working and I'd eventually have to resort to surgery... As much as I could have cried at that point, I knew too much to give a great deal of credence to his statement and realize I'm back to square one to find a local ENT who "gets it".
Keep the faith!!!
-
Good for you---I'm glad you "know too much" to give that ENT credence!!
Sounds like he needs to know a little more!! "never heard of CK or GK working"??!!!!!
Pleeease!!!
-
boy Bruce... right on the money! Mark (here on the site) is a perfect case of post CK, over 5 yrs out and clean as a whistle. Many here that have had CK or GK have shown the darkened line in the MRI (signs of necrosis) and hoping my MRI on Aug 14 will begin to show the signs as well (it will be 4 mos post treat...so not expecting much but boy, wouldn't it be nice to see a sign of it, however small).