Hi everyone,

I have been having a very bad time of it for about a week. I went to bed one night and when turning I could feel the dizzyness behind my eyes but didnt pay much attention to it because that is par for the course to me but when I went to get out of bed the next morning, whoa, I literally couldnt stand up and once I did get up it felt like I was weaving back and forth and like my head was too heavy for my body.

I am still having this intermittently, and mostly from getting out of bed and then it will subside a little but I never have had this particular form of my dizzyness, it is usually an off balance/disequillibrium but not a vertigo feeling.

I am diagnosed with mav, but since the testing 2 years ago I wonder if something else has cropped up? I am sitting here rocking back and forth and feel terrible, nauseated etc. I am also having a more noticable light sensitivity and false things in my vision with this. I can feel a nasal quality to my voice, like I can hear it in my ears, and also feel like one or the other ears are blocked at times also. My neck is killing me, stiff, sore, from keeping it straight and I have a pressure behind my right ear in the bone back there. So what I am getting at is, am I experiencing something new? Is this a decompensation of some sort? Does it sound like BPV? It is definitly worse when my head is in certain positions, and I am suffering a depersonalization effect from this as well as brain fog. It is scaring me. One other thing, the night before this happened at work we ate popcorn and pretzels, basically your typical nurses diet, and I wonder if the salt set it off? I have also noticed( I have had this phenomenon before) but lately after driving a distance when I get out of the car it feels like the ground is undulating beneath my feet or coming up at me, my legs feel like rubber and it takes quite a while to overcome this. Help from any of you is so much appreciated.

Kim

Well you do have some cocktail there..

Share a lot of your feelings, since most of them I can relate to the MAV pattern, wich by the way is not my own "official" Dx, but i'm certain that it's affecting me.

The spaced out, and that, as you may already know, could fit more into the migraine/anxiety tandem...

Since true vertigo can be felt form MAV there is your prime suspect, but as you describe it, sounds like it could be BPPV, since my "real" vestibular trouble started exactly that way, you sghould check with your doc for the dix-hallpike manouver to see if it is BPPV or not, or if it's just another MAV related episode.

Best.

Hello there,

Nothing you say is inconsistent with your MAV diagnosis. All that you say would be possible with MAV and, unfortunately, with this crap condition, it can change over time - you think you have the measure of it then you don't. I developed horrible light sensitivity 3 and half years in to this only having experienced it briefly and momentarily before

I don't know a huge amount about BBPV, but of course if you have a another vestibular disorder it can crop up. The vertigo with MAV can be positional, which confuses things a little. There are others here who could probably tell you more about sussing whether BPPV is playing a role. As far as I know the vertigo of BPPV tends to have a very specific quality - spinning as you move in to a position - namely, for example, if you turn on to your left or right side in bed, then you spin etc....

You know I feel for you. I know, like me, you have had a tough time with drugs and have developed a fear of them. I was the same having gone through the wringer with amitrypityline, nortriptyline, pizotifen, citalopram, and worst of all topamax - arghhhhh. Anyway, I had a relapse 3 months ago having been doing really well, and just couldn't take the severity of the symptoms. I bit the bullet and realised I just wasn't going to get well without a drug. Despite having a bad time with a beta blocker before, I decided to try one again and am finally having some success (I hope - my improved health could be a fluke but hopefully nit's the drugs.) I started really low 20mg a day - I may work up to a higher dose. There are some SE's tiredness, weird dreams, but compared to my experience on some other drugs it's a party and more importantly I have seen some improvement.

With MAV symptoms that disabling I would urge you, despite your many awful experiences, to try another drug. I feel that part of what helped me this time was that just prior to re trying the beta blocker I tried the siezure med, my experience with that over 6 wks was so crap, that I lost my fear of drugs. It was like if I can take a seizure med, which I dreaded, then anything else has got to be better and I can always come off it. I think my anxiety around drugs was impeding my ability to tolerate them - some big time anxiety was at play when I tried to take them. I know the drug merry go round sucks, but so does MAV.

Migraine does work in cycles and so, eventually, this could just go, but obviously a drug that worked would help immensely, just a thought,

best,

Kim,
You said you feel nasal. What you described reminds me of how I was when I had an inner ear infection in both ears. Have you had a cold recently? I had buzzing and one day I was in the shower and turned around and almost fell down. Thank god for a small shower stall. You might have other problems, but this could be something new on top of your original problem.

Johands333- you said you had a buzzing? how long did you have the buzzing for?