I posted this in the "other dizziness" forum, but I"m hoping maybe someone with MAV can tell me if this sounds like it?

I'm 37, female and have been dizzy in one way or another for 10 years now. It first started all of a sudden with an acute attack of room-spinning vertigo in the fall of '97. Every so often the room would spin to the right and I would feel like I was going to fall over. I had an MRI with contrast, MRA and EEG with a neuro - all negative. I was diagnosed with BPPV even though he couldn't reproduce vertigo with Dix-Hallpike.

So, with a benign diagnosis I didn't worry about it. It would come and go so that I would often go years or months without any vertigo - and sometimes I'd have many spells a day.

Fall of last year I got three opthalmic migraines (diagnosed by an opthamologist after dilated eye exam). Shimmering blob that started in my central vision and worked its way out. Opthamologist said no worries, but follow up with my GP in case of high blood pressure or something. Couldn't get an appt for 3 weeks. I hadn't had vertigo in some time and in the meantime over Christmas I started getting dizziness again. This wasn't the room-spinning type I'd had before. It was far less intense - I didn't feel as if I would fall down - but it lasted much much longer; it would last most of the day for weeks at a time. Then a few weeks would go by without anything. I *think* there may be a correlation with my menstrual cycle but I'm not totally sure. If so, it may be occurring the week before and the week of my period, with the other two weeks being fine. Again though - not 100% sure but I think it may be the case.

It's just an off-balance feeling - and it's hard to focus my eyes. It's not as if things are blurry, but I just feel like I'm having trouble focusing on things. It's quite hard to explain. Sometimes I feel as if my eyes or one of my eyes bounce around. I don't think it's nystagmus, but it feels weird.

I have had severe anxiety because of this so I have recently (3 weeks ago) started taking Zoloft and have been prescribed Xanax .25 mgs 2x a day. The Xanax helps tremendously so I figured it was just anxiety causing the dizziness - like everyone kept telling me. However, I've recently read that Xanax is a vestibular suppressant and used to treat vertigo, so that kind of disheartened me a little bit.

I just saw a neurologist who after a very brief history and exam said he believes it's an inner ear problem and sent me for a VNG that same day. He also ordered an MRI "for reassurance" - mine, supposedly. He doesn't expect anything to come of it but he says it will ease my mind.

I haven't officially gotten the results of my VNG yet though the audiologist said she would tell me if anything was abnormal and she said it wasn't. She said everything looked fine and before I left that her best guess would be migraine. She did say at one point while the goggles were closed and it was dark that she thought I had some upbeating nystagmus - which scared the hell out of me b/c I've read how that's usually a very very bad sign. However she said it was very very weak - too weak for her to even measure with the computer, and that it stopped as soon as I fixed my gaze. She also said the Zoloft probably caused it and that unless it's beyond a certain number of degrees (or something) it's not considered a problem and that I shouldn't worry about it. Of course, I still do.

My MRI is schedule for this Thursday. I'm terrified that I have MS or a brain tumor or something just as horrible. I really doubt it's BPPV - I hope it's migraine or anxiety, but I really fear some horrible pathological process is goig on. I suppose I should mention some other details - not sure if they are helpful:
sometimes I have small pinpoints of light in my peripheral vision - seems to be a random event, and occassionally very minor tinnitus - in both ears (one at a time usually). I *sometimes* get one sided headaches as well, though I can't always correlate them with the dizziness, and they are usually on the right side but not always (the other day it was on the left), over my eye and on the back my neck. I don't usually get headaches though. I'm also 11 months post-partum and have just (this week) weaned my daughter off breastfeeding. I have some tingling/numbness in my right foot/leg sometimes but my GP thinks it has to do with my shoes and I also have some low back pain on that side, so it may be sciatica. (of course, makes me worry about MS even more).

If you've managed to stay with me through this excruitiatingly long post, thanks! Do you have any thoughts?

It sounds like I wrote the above! I have no official diagnosis, but after 8 months of this (and my sister has the exact same thing) I have self diagnosed. I am tired of doctors telling me it is from anxiety because anyone will get anxiety when this happens. I, unfortunately, have almost no days where I am not feeling weird or dizzy. There are two types of dizziness. The room spins or you spin. I get both but I am spinning most of the time. Hard to watch TV, read, computer, and I can't work right now. I have had a clear MRI, CT scan of sinuses, VNG, and all blood tests were perfect. I look great. People think I'm nuts. I ask...what does wooziness and horror look like? Well, try not to worry because your MRI will most probably not show anything. I was almost hoping mine would so I could be treated. At this point, my hope is on a neurologist I'm finally seeing on the 17th for sleep study results. I am hoping he will take me as a patient because all I get from the other docs is, "Sorry, I don't know what it is." Then they turn me loose. Lovely.

Thanks for your reply, Rita. I wish it was anxiety - I can work on that!! I was thinking it was anxiety b/c the Xanax seems to help, however when I read that it (and other benzos) are used to treat vertigo as "vestibular suppressants" I got a bit depressed.

These days before the MRI are making me a wreck. Of course, waiting for the results - which will take who knows how long - will probably be much worse. If I get a clear MRI, I will be doing cartwheels and dancing in the streets. I'll be determined to figure out what I have but as long as I know I'm not getting a diagnosis of impending death or disability, I'll be fine!

There aren't enough anti-anxiety meds in the world to help me right now!

I didn't do cartwheels in the streets when mine was clear, but I was happy. Then I started to think...well, they didn't do contrast, maybe they missed something. hahahaa Anyway, I'll tell you why I know mine isn't anxiety. First, when I had bad symptoms I tried upping my dose of Xanax and nothing happened. Now I'll tell you why taking Xanax seemed to help you. Because anxiety makes this worse and if you stop the anxiety, it will usually help make it feel better. Don't get hooked on Xanax, though. It is awful to try to get away from. I have been on it for 20 years.

I am a nurse and have talked to a bunch of doctors "off the record" and none of them had any help, either. Funny, not ONE mentioned MAV. I definitely think mine is hormonally triggered, too.

I've been diagnosed with functional vertigo, so have minimal experience (if any) of MAV symptoms, but I found this thread a very interesting read.

Always remember though, ladies, to gain medical supervision before altering your meds dosage, just to keep you safe and well xxx

__________________
We strongly advise anyone wishing to take up vrt or change/stop medication should consult their doctor first.

RE: the Xanax, I take about .25 mgs a day - sometimes 2x a day, if I'm feeling really bad. I've been told I can take as much as .5mgs at a time, but I haven't had to do that but once or twice when I was having a panic attack, and I"ll probably have to do it tomorrow during my MRI b/c I'm very claustrophobic.

I've heard about its possibility for addiction but my GP isn't too worried about it at that low dosage. I'm not sure how it would be addictive exactly. It makes me feel "normal" but I don't get any special high or great feeling from it. Is it more physically addictive - i.e. - will I likely get physical symptoms from stopping it?

Hi,

Upbeating nystagmus can be caused by migraine. I get numbness and tingling in my right hand which my neurologist says is a migraine aura, so it's likely that you can get the same in your leg/foot. I have MAV but my headaches don't always correlate with my dizziness.

I hope that you get some answers soon and that your MRI is clear. xx

Xanax is addicting. There is no two ways about it. It only "takes the edge off" for me and, like I said, I've been on it for 20 years. I tried to go off of it completely two times. Both times reaped horrible withdrawal. I did manage to go from .5 mg TID to .25 BID, even to once a day for many years. I never could go without it the whole day, though. I don't care so much. I am on a very low dose. Just don't let it fool ya! It is a wonderful drug, but is very addicting.

What kind of withdrawal do you experience when you stop taking it?

For me, my anxiety symptoms were magnified by tens! I experienced severe depression as well, and it just wasn't pretty. There are others, but that was my experience.