Vertigo out of nowhere... advice?

[cathyroe]

Dear fellow AN friends, I come to you this morning in a state of panic.

I've been watching and waiting.... feeling more symptoms like a slight eye twitch or facial tightness, but last night i woke up to look at the digital clock and the red numbers were a total blur. When I sat up, the room started spinning at record speed. It calmed down in about 60 seconds as I sat up, but laying back down started the room in a frantic spin again. I sat up from 2 in the morning until now, afraid of losing control of my life. As long as I sat up, the room stayed still.

I have an appointment with Dr. Lundsford in Pittsburgh next month just to consult about GK. But now I think I should turn that consult in to the GK treatment. I have scoured this forum using "vertigo" as a search, but haven't found any accounts quite like what I experienced PRE treatment.

I know doctors will suggest treatment in line with what they do, so I am assuming my GK consult will result in "get GK". But should
 this kind of pre-treatment vertigo rule out GK? ( I read that in one of the forum comments)

If anyone has had this type of "vertigo attack", can you tell me if it continued in the same vein? Drugs are mentioned on the forum, I will call my doc today. Forum comments on drugs take many different opinions in the past, but many posts are a few years old.

I teach dance and yoga and never expected to have balance/vertigo problems. The tinnitus, wonkyness, hearing loss, facial stuff during "watch and wait" is one thing.... but this vertigo is downright terrifying. I think watch and wait has come to an end.

Cathy

[cassie]

Hi, Cathy, Cathy from another Cathy with a C!

Yes, I have had almost that exact scenario happen to me, twice, before I went in to the ER and  got my diagnosis of a golfball sized neuroma. Surgery followed 2 weeks later, as mine was large. Up until surgery, I was on steroids. I was basically a gym rat back then, and I was able to keep the balance issues under control with the steroids. I was at the gym, taking cardio classes the night before surgery. I basically had no other symptoms other than balance issues and extreme nausea and vertigo prior to my diagnosis. I am 6 months out of surgery now and back to the gym although I am scared I'll fall. I still can't hold those poses where you stand on one leg and hold your foot behind you. But I still have some of the neuroma in there. Gamma is supposed to happen early next year, if and when my face ever comes back.

Good luck to you. I was in ICU for almost 2 weeks after surgery due to extreme swelling and I could not even take a step without vomiting for weeks. I remember the nurses walking me down the hall, about 20 steps and I could barely do it. I joked I would be doing a mini marathon in 6 months and now I feel as if I could do that right now, especially if I run in a straight line. So whatever route you have to go, remember to stay positive. Gamma or surgery, you gotta get that sucker outta there.

Cathy

[cathyroe]

Thank you Cathy, for responding.
Something unusual here.... I called both Doctors that I see, one in Fort Wayne and one in Hinsdale (Chicago) and they both told me the same thing.
For anyone else with similar symptoms, here is what they said.

The vertigo is not directly caused from the tumor, but the tumor changes the chemistry of the fluid in the inner ear. That chemical change can cause crystals in the inner ear to dislodge and float in the fluid, causing the spinning vertigo. It's called benign-paroxysmal-positional-vertigo.
It is supposedly common. Really??? Because ANs are supposed to be rare. But I guess the AN can cause the problem.

http://vestibular.org/understanding-vestibular-disorders/types-vestibular-disorders/benign-paroxysmal-positional-vertigo

Both doctors told me the same thing; drugs will not help it, but there are specific exercises that will. They have them on youtube.
http://www.youtube.com/watch?v=ja-0DHpBfqk
http://www.youtube.com/watch?v=CTZfIv165sY

Needless to say, I am doing the exercises. I am also going to Pittsburgh in 10 days to talk to Dr. Lusford about GK.
Yes, I'm going to get that sucker outa there.
Cathy

[cassie]

That is so weird, because after I got on the steroids, I didn't have the vertigo or nausea anymore.

[jsanders1379]

I would definitely recommend having someone help you do the Epley Maneuver. My Vestibular therapist did it one time (sometimes it takes a few repeats) and it got rid of the spinning sensation completely...having these little crystals bouncing around IS very common, according to my PT, but some of us are just lucky enough to have them PLUS the AN....good luck-Jeanne