Hi I'm new, possibly have Mav?

So I woke up one morning dizzy about 7 mths ago now, and I’m still dizzy, mostly off balance. The night before this happened I was eating dinner and a wave of nauseousness came over ne and I felt odd the rest of the night but not dizzy. This is what originally mAde me think virus? Ive had lots of tests, the only thing that has come back with anyhthing wad the caloric test said 33% lower on right ear, but should be compensated…which has obviously led me the mav route…neurologist has prescribed verapamil but im scared to take it( even though I’m a pharmacist lol) I’m still med sensitive. I have been on a low dose of lexapro for about 10 yrs so adding an ssri won’t help. I did schedule a phone consult with dr gain for November to get an experts opinion. I just need to ask for those that do have mav: did u think inner eat first? Tried vrt? Work full time? ( I have to, have no choice, but I’d rather stay home on the couch everyday with these horrid symptoms) and for the administrator , I think it’s Scott? Have u seen people on this forum that’s been here for a while then u never hear from them because they’re back to normal!? I’m just having a hard time here. Before thus started I never had any motion intolerance at all, in fact I feel best in motion such ad driving or walking…another comment question I have is that when sitting I always feel like I’m leaning/ falling to the left, is that chAtscteristic of Mav?? Currently I am working with a physical therapist to loosen my extremely tight neck muscles ( she thinks I have cervicogenic dizziness) and then were gonna work on my balance. I just can’t believe this nightmare I’ve been living for 7 months! Any comments answeres are appreciated!

Hi and welcome :slight_smile:

To answer some of your questions, yes, I did think I had an inner ear problem to start with, and I did end up with one as well as the MAV as I developed BPPV too, so it was kind of complicated.

I also have worked full time all through this. I’m now recovered, but I was bad for most of 2010, and it was probably close to 18 months before I felt normal again. I have a job that’s pretty flexible and I can work at home sometimes, so I did that on days when I was too bad to feel safe driving to work (which weren’t that many to be honest). Generally I found forcing myself to do stuff was good for me, both in aiding my eventual recovery, but also in keeping my spirits up and not letting me sit on the sofa all day feeling sorry for myself.

I also had VRT but not until my MAV had stabilised (using propranolol and pizotifen). This really sorted out the residual problems that I had left, at the point when I would have said I was 90% better, but I’d been stuck at that point for a few months and wasn’t really making any more progress. I did Brandt Daroff exercises for a few weeks, and even within days I felt a major improvement (which took my pleasantly by surprise, as I wasn’t expecting them to help!).

And yes, apart from a few people like myself, hardly anyone sticks around once they recover, which is fair enough as most people want to move on, and possibly people get more support from people who are still going through it themselves? I like to stay around a bit, as I want people to know there is a chance of making a really good recovery.

I hope your telephone consultation goes well and you get a proper diagnosis. I think not being sure what is wrong with you makes it even harder to cope with. Good luck :slight_smile:

Hi Pharmgirl -

Sorry you had to find us. What struck me about your post was that you were just sitting eating a meal when the first indication of a problem hit you. That’s what happened to me, though it was the dizziness that hit, and though I didn’t know it, I was having a migraine aura too (tunnel vision); and I thought that the dizziness plus my field of vision narrowing like that meant I was about to pass out or have a stroke. So, no, I didn’t think inner ear.

But I’ve gotten much better, thanks to Topamax. If I could handle 200 mg, I’d probably be just fine, with no dizziness at all and no headaches either, but side effects are intolerable at that dose so I take 150 and get pretty darn good symptom control: occasional breatkthrough mild dizziness, and headaches that stay mostly in the mild to moderate range.

But before my diagnosis and treatment, when this beast first got hold of me, I couldn’t turn my head side to side or look up and down from a book or newspaper without getting dizzy, plus I had the severe dizzy spells coming on at random times, and I was wobbly when I walked much of the time. A nightmare! So I wanted you to know there IS hope. Hang in there.

yep i thought inner ear b/cause of high pitched rinnging and a massive explosion. ive got vest nerve dysfunction but also have headaches too. i had bad ngstamus aswell for 1 eposide. ive been told most likely mav and maybe also v/n. some people are lucky and find a med that helps pretty quick. so far ive tried 3 without being able to tolerate it more than 3 weeks. im 3 years into this, but bear in mind i have it quite bad. i think it can vary across the board in severity and some are better at taking on the med thing, im quite weary as i always cop s/effects. so in short i wouldnt recommend the path ive taken and if you can, do the meds as this can go on and on if you dont. do you have a history of migraine or have chronic headche? as you know thats a key indicator…theres some thought that chemicals flood the vest system due to migraine thus causing ea/balance issues.

Thanks for the advice and encouragement. I still haven’t been convinced it’s migraine because I have never had migraines or motion intolerance before this happened out of the blue and the way it came on really did feel more like a virus, so I’m gonna give it a couple more months with lifestyle modification, optimism, and anxiety reduction before I try the meds since side effects like me! I am eager to get dr hains opinion though as well. My biggest fears right now are flying and pregnancy, both of which I’d like to do at thus point in my life and I don’t want this “thing” to hold me back :frowning:
I do think it has been beneficial fir me to push throuh this like I have as far as work and life is in involved because it has forced me to adapt in the case that this never goes away, I wouldn’t want to be disabled got the rest of my life. This forum is amazing though and really helps me deal with it better. It’s hard for friends/ family to relate.

Hi Pharmgirl,

Welcome to the forum (but sorry you have to be here).

Great news that you’ve got a consult with Dr Hain - he’s one of the top guys so you’ve lucked it in there.

One thing in your post that screams MAV to me is the feeling of falling to one side. That’s exactly what I’ve had (and it’s maddening isn’t it?). And it’s always to the same side - like being pushed and/or pulled, a bit like a shopping trolley. Do you also have the sensation that the floor is squishy/moving beneath you?

It can be very hard to accept that this is migraine, especially if you’ve never had (or never been diagnosed) with migraine before. Most people only think of migraine as crushing headache and for most people that is true. But there are many migraineurs who experience many other symptoms and some hardly get headaches at all (me for example). Vertigo and giddyness, dizziness (whatever you want to call it) is a VERY common migraine symptom. The other thing I noticed that is making you reluctant to think it might be migraine is that it happened so suddenly. Just FYI migraine can come on like a light switch, from out of nowhere and with no warning. At the start of my last chronic episode (two and a half years ago) that’s exactly what happened. I was completely fine and mid-way through a sentence and BAM I instantly felt incredibly, horribly unwell. No warning. I didn’t realise it was migraine (different to usual symptoms) but that’s what it was.

Lastly - the good news is I am well! (Although I did have a migraine on the weekend). I no longer have chronic migraine or vertigo and I am no longer on meds. So, I’m in remission and touch wood I stay that way. I stay in touch on the forum because it has been such an enormous help to me to have the knowledge and support of everyone on here. Really, a life saver. Also, there are lovely, cool people on here who I enjoy interacting with.

Hang in there Pharmgirl!

Vic :slight_smile:

Thank you Victoria!
I actually can’t say I’ve had the squishy ground sensation. I’m just kinda feeling like I’m never gonna feel the same As before this all started :frowning: wi I ever be able to fly or ride a boat again? Or what about pregnancy, I really want children?! Can I ask what meds if any helped you? I felt hood for a cpl days and then bam the barometric pressure was insane now I feel horrible again!! It just feels like my life is over sometimes. I have good days and bad days so I guess this is a bad one? I get so much pressure in my head.

Hi Pharmgirl, welcome, so sorry you are here though. I have been sick with this thing for 3 months now, I am still trialing meds but I try and keep positive I will beat this thing. This forum has helped me so much! I understand about the head pressure, that has always been a big thing for me, and it went away for a while but now seems to be back again. I think its great you are going to have a phone consult with Dr. Hain, he is one of the best for MAV, and if I dont get much help from my local doctors in a couple months I have been thinking of setting up a phone consult myself. I go through a lot of what if’s myself so I know how you feel. I just had a baby 5 month ago, my first daughter, and I feel like I have been sick most of her life, I want to be back to my old self, enjoying my kids, being super mom again. Ill never understand why this happened to me, but I just keep telling myself one day I will hopefully look back and realize how far I have come, and I sure will appreciate life so much more.

Hi Pharmgirl,

I know how you feel. With chronic migraine it can feel like there’s no end in sight. And it’s farking miserable that’s for sure. But plenty of us DO get better. Check out the success stories thread and the recent post by MSDXD.

You WILL be able to get on planes and boats and try for a baby. Absolutely no reason you shouldn’t. You’ll get there.

Vic :smiley: