The Vestibular Migraine & Secondary Hydrops Community
Read our welcome post, user support wiki & visit our member recommended products page

Is this still MAV or no! Please help!


#1

I have suffered with MAV for 17 years but due to incredible stress the last year and a half, it has intensified and become daily and constant. My problem though is the last several weeks I am having what seems to me more like BPPV. If I lay too long on my left side and sit up, I get extremely dizzy. It feels like gravity is trying to yank me down and there is terrible pressure in my head. It varies in severity. Once it was so bad that I couldn’t sit up without getting very nauseous and ended up in the ER. The last couple of times it has been less severe but terrifying all the same. I had a VNG test about 2 weeks ago that came back normal and she said at that time I was clear of bppv. So, is this MAV that is triggered by me laying on my left side? Has anyone experienced anything like this? Please help me! I’m completely miserable.


#2

Hi, and welcome.

Mvertigo.org is a discussion support group. We are not qualified doctors and cannot give you a diagnosis. Under our Welcome section you will find lots of MAV information and links to other trusted websites which may help you reach a more informed decision. Having said that, purely as a MAV sufferer for 15 years, I’ve had what seemed like BPPV lying on my right side as it happens so would imagine it’s more than likely to be MAV really. MAV does change over the years, on here we say ot ‘morphs’, so new symptoms to you do appear. Very disconcerting it can be too. On a more personal note my MAV started out just like BPPV, so much like it I carried a mis-diagnosis of BPPV for about 12 years! As you say your MAV has intensified recently and now you have this ‘BPPV’ type symptom it might be good time to seek some migraine preventative treatment perhaps. Meantime sleeping on more (higher) pillows might ease symptoms a bit maybe.


#3

Good lord Helen…i didnt realise how long you had been misdiagnosed for…12 years!!! How could they leave you like that for SO long!!! Good grief!!! With no meds either???
Jo x


#4

Not long, if you say it quick eh. Yes I wore BPPV like a lable. First GP’s diagnosis stuck, nobody else bothered to rethink. Opposite in fact, I ‘got told off’ even once for phoning on a Friday Inew symptoms appeared) as they said ‘it’s BPPV, you know that’. And no I wasn’t ringing the GP hardly ever just for very occasional Buccastem repeat prescriptions. Even 2 ENTs did their best to bend my symptoms to fit the BPPV. One actuaily said You shouldn’t be that ill (ie was he saying, ‘you are a wimp?’), with what you have wrong with you, ie BPPV, except it wasn’t. Only er ‘good’ thing abt it was episodic, not chronic for those 12 years and between attacks it would go away totally. Used to get perhaps max. 2 attacks a year, no documentation to check but must have been abt that. Once it went chronic the only way I managed to get to see neuro-otologist fir which I paid privately anyway I had to get a GP out to see me when chronic, and conveniently I had a perfect ‘excuse’. My brother had been diagnosed 10 yrs previously with a rare movement disorder and was told to go back to see same specialist in 10 yrs and meanwhile to check for family history of same disorder by getting me, his only sibling, to see a neurologist about that. He just happened to diagnose the MAV in passing. In 45 minutes he dud full exam and eliminated me from having the movement disorder and duagnosed me with MAV in passing. As Him Indoors said he accomplished more in 45 minutes than the doctors had in 12 yrs! Doctors practice I attend doesn’t know of the existence of MAV/VM, didn’t then, still doesn’t. Helen


#5

Nor does my GP know anythng about MAV. Like a startled duck when ive had to explain my symptoms and diagnosis. I am SO lucky to have a headache specialist nurse on the other end of the phone
Jo x


#6

Welcome to the board, be sure to check out the welcome pages.

Agree with Helen, BPPV like symptoms are very common amongst MAVers.

I’ve found keeping your head up in bed, on a stack of pillows, can really help.

I’ve almost banished entirely the BPPV like symptoms I have had. Like Helen says … things morph.


#7

Guys…even my neuro who diagnosd me with Chronic Vestibular Migraine has said i have symptoms of BPPV along with MAV so it must be recognised by the top dogs as well. She really wants me doing VRT but i cant bring myself to do it…it mkes me worse

Helen…i’ll just pop i to tesco instead!!
Jo x


#8

That’s great VRT, especially the big hyper-market sized ones!


#9

Absolutely…it takes me hours to pull round after a visit there…:grinning:
Jo x


#10

Oh, only hours. Mine used to take up to 3 days with supermarkets and I used to come out literally bent double. Much improved with meds although I don’t do Big Shops and I pick my day depending on how I feel, and don’t go busiest times. Last time I even went round without the sunglasses just a wide brimmed hat!


#11

Get you!!!:grinning: