is this common?

[madison]

HELLO
i go for my next post gk mri in may. a few mths ago i had an episode of vertigo and many of you told me its par for the course and that my balance nerve needs to adjust to the radiation, etc.. that made me feel much better, so thank you to those who replied. recently i've had a few more very short-lived episodes while i'm in bed at night. it seems that i roll over and have a dizzy spell which makes me feel a little nauseous too. but then i'm able to go right back to sleep ater. also, for a few days now, i've had an off and on sort of pain on the an side right near the opening of my ear-not my temple but just below there.has anyone experienced this before? i wish there was a way of knowing if certain symptoms meant things were going well or not well. i guess not though. well, thank you for your time and any info. you might have.

[kenneth_k]

Hi,

Dizzy spells are well associated with AN's.
After all, most of them are originating from the vestibular nerve responsible for balance.
Before my surgery, I also had troubles during night when turning over in bed. Quite frustrating.
I hope your problems will resolve soon.

Regards, Kenneth

[madison]

thanks. i seem to have one issue or another with short periods of feeling great in between them. today i haven't felt well. i've had a pulsing or kind of vibrating sensation in my head now and then. i've never had that before! i don't feel dizzy, but not all there either and my ear feels full. i'm so glad this forum exists or i don't know what i'd do. i guess i'll see what's really going on in there next month. do you ever get stressed out when you're feeling wonky headed that something worse is happening? i always think i'm stroking out or something which probably makes things worse as we know stress can really mess things up. i can't help it though. well, thanks for lending an ear(even if it might not be a great one..hahha had to say it ) see ya.

[mk]

Hi Madison,

I totally understand what you are saying, as I have been going through the same kind of thing during the last 4 months. It's like having "rolling" symptoms, one thing following another, nothing really serious, but always bothersome, since you can never tell what's coming next, and more importantly, if it means that anything serious is going on. It started from sudden hearing loss, coming back with steroids (but not fully). After the steroids were over I started having some wonky head here and there ("not feeling dizzy but not all there either" describes it perfectly well), some twitches, some odd sensations, some fullness in the ear, all coming and going. Nothing really intense that I couldn't live with, but always worrisome, making me worried that something is going wrong.  When I contacted my doctor he said that effects from radiation can be felt as late as after 2 years, and unless I get nausea - severe dizziness etc. not to worry.
Anyway, this has been driving me pretty much nuts, and hopefully the wait will be over tomorrow when I get my scheduled MRI.

Marianna

[hevreh]

Hi Madison-

I really appreciate your inquiry having just read it following my own post. Wow, it is frustrating and I too was told by docs that I could have post-treatment symptoms as long as 18 months. What is so surprising for me is that I came out of CK making anticipated progress. I now fear the worst as pending stoke etc., confirmed by your own post. I am formerly from NJ and wonder if you diligently researched your options. Given what I've since learned and if recovery goes as I've been told, I'd make the same CK choice but wow the journey can be tiresome!! Good luck and keep us informed of your progress.

[sunfish]

Make sure you get the vertigo thing checked out, maybe by an ENT doc.  There's such a thing as a "positional vertigo," which can be made worse by rolling over.  This would be totally unrelated to the AN.  It's fixable with some rehab. exercises. 

[Anomar11]

Madison,

I'm 17 months post CK and had a dandy bout of vertigo at 4 months out 3/09, and a lesser one just this Sat.  A year ago, I did need to go on decadron.  So far this time, I'm managing with 2 mg valium/3 times daily and some meclizine at night.  I had no symptoms until 4 months out.  After that incident of vertigo, I had varying degrees of wonky head as has been described, but learned to live with it and generally, it has been getting better.  I also had hemi facial spasms 6 months out that stopped at month 13.  My vertigo is different than yours though, it's when I move my head.  Hopefully this will resolve for you.  Have you tried either low dose valium or antivert (meclizine)?  Hope this resolves for you.

Mona