MAV......maybe?

Hi all, I found your site through a link from DizzyTimes. I was diagnosed with VN in November last year after 7 months of ‘dizziness’. Mine all started out of the blue sitting at my desk at work in May 09. I have no severe vertigo and never have, just a constant 24/7 ‘off feeling’, ‘foggy head’, ‘rocking’ … (you’ve heard it all before) which varies in intensity day to day. I’m now over a year into my nightmare, with no noticeable change from day 1 of this. I’ve been doing VRT since December which seems to make absolutely no difference to me other than drain me financially!!!

In November I was sent to London to the top place in the UK (allegedly) for balance disorders and after 4 hours of testing was given the diagnosis of VN. Now my diagnosis was given on my history as every test performed came back normal. Anyway, with no progress made I decided to explore every possible avenue along the way (MRI scan, sinus scan, dietary changes, dentist, optician, chiropracter, homeopath, osteopath…), all with the same result - everything is fine. I decided to get a 2nd opinion by visiting a different Neuro-otologist which I traced through the other website in blind hope more than anything that he could help me. His opinion was that I have an atypical migraine and start medication, which up til now I have avoided completely…So today is day 1 for me on 10 mg of Nortriptyline which I am to increase by 10 mg every 3 weeks for the next few months.

I should also add that other than the odd sharp pain in random parts of my head I DONT suffer from headaches. I have tinnitus and the occasional pain and popping in my ear…Driving is like heaven for me as it’s the only time I feel normal other than lying down on the sofa in the evening and fluorescent lights and computers are the anti-christ.

Does any of this sound ‘normal’ to you guys?

Chris

Everything sounds familiar to me, including lying down and being in a car as the only relief from this. It surely sounds like MAV to me. I wish you all the best on Nortriptyline. Did the doctor give you a sense of what dose might be helpful. good luck!!

Lisa

Yes…that sounds exactly like me! It has definitely been a challenge for me to get a definitive diagnosis and finally one doctor mentioned migraines. For me driving in the car is the ONLY thing that makes the rocking stop. I wonder why that is?? But anyways good luck on the medication and I hope you get some relief!

— Begin quote from “MAVLisa”

Everything sounds familiar to me, including lying down and being in a car as the only relief from this. It surely sounds like MAV to me. I wish you all the best on Nortriptyline. Did the doctor give you a sense of what dose might be helpful. good luck!!

Lisa

— End quote

Hi Lisa, no he didnt say…I’m in the dark with all the meds at the moment, I dont even know how high a dosage I’ll go up to or how long I’m to remain on this one before moving on to another…I suppose they dont want to give you false hope and you never know, by some miracle you could fix it first attempt…I bet nobody ever has mind

Chris

Sound like my symptoms. I also get relief in a moving car, and I don’t know why. I also feel normal when in a pool.

I just restarted nortriptyline, and am on 30mg now. No difference yet. I used to take it 2 years ago, but my ENT told me to get off it since he believes I have meniere’s and the meds interferred with treating my condition.

I think I have MAV though. I wish I knew for certain, but my doctors can’t agree.

My symptoms are a constant rocking feeling, and tinnitus. I do not have headaches.

I’m another one in the driving heaven club - it’s the stopping that sends things mental! Interestingly though for me lying down is the worst of all positions. It took me several months after the symptoms started before I could sleep flat in bed. Even now on a bad day I’ll need to prop myself up with pillows. I rarely get headaches, but I can relate to the ear symptoms and the tinnitus and the foggy head…

I’m wondering, have any of you with the rocking + relief from car got any help from any meds? I think clonazepam is the best treatment for this particular kind of “rocking”. Anyone tried that?

— Begin quote from “MikaelHS”

I’m wondering, have any of you with the rocking + relief from car got any help from any meds? I think clonazepam is the best treatment for this particular kind of “rocking”. Anyone tried that?

— End quote

Too early for me to give you any real feed back on that…but no I havent tried Clonazepam, I’m just starting on Nort

— Begin quote from “CJL”

— Begin quote from “MikaelHS”

I’m wondering, have any of you with the rocking + relief from car got any help from any meds? I think clonazepam is the best treatment for this particular kind of “rocking”. Anyone tried that?

— End quote

Too early for me to give you any real feed back on that…but no I havent tried Clonazepam, I’m just starting on Nort

— End quote

Ok best of luck with it, it’s a real good migrainemed and works for a lot of people so I’ll keep my fingers crossed for ya =)

ROCKING? OH YEH!
Me too, I’m better in car’s.
Seems to knock the dizziness away…
Did any of you Travel prior to having this rocking?
Boats,Planes,trains,long car rides?
I also feel better on long car drives.
It’s seems to be a way to stabilize the senses.
Some Mal de debarquement (MDds) patients also have beneficial effects with this.
I’m now going Off of effexor and BACK on to my old med “DOTHEP” with No probs…
Trycilics are the best for me.
And yep all the above sounds like me
I have MAV
Hmmm? :smiley:

jen