BVVP

Hi, i am new to this forum and was looking for people who have had this problem long term - i am 'only' 3 1/2 years, but it feels like a lifetime as it is every single day, not intermittent. How are you now and have you had any help from gp's etc??

I have had it for seven years now. Have been prescribed various tablets and have had the Eppley procedure. Nothing helps. It gets worse when i lie down. It does not just come on when i move my head, but comes on sometimes when my head is perfectly still. It is seriously impacting on my life njhow, as I did not have a holiday last year. I do not know when I am going to have an attack but if I had one on holiday, it eould be no fun for me or my companion as it usually lasts several weeks at a time. Doctors are sympathetic, but don't seem to be able to do anything about it. One said to me that as it's not life threatening, there is very little reseach done.

How did your scan go?

Yes i have had the same experience with doctors. but for them to say it's not 'life threatening' i find extremely insulting, not to mention narrow minded, as ultimately it can be. ie, as in older people having falls due to balance or even accidents in the home when handling hot things, dropping them etc etc. The list of possibilities is endless. I don't travel at all, due to the exhaustion element. You should check out a good website on this issue, if you haven't already, called Veda (can't remember whole thing but if you google that you'll get it). It's American and is very i formative.

Thank you for your responses, mine started after a river cruise in Germany within a couple of hours of leaving the ship, the journey home was awful as I just wanted to vomit. I was told that it is calcium particles that do not return to their normal position, within the ear so your brain is at odds with your eyes which is what causes the dizziness,

it is quite a frightening experience more so if it happens away from home. I think you have to be positive though and try not to let it take your life over. My GP try's to be understanding but to be honest I don't think GPs know a lot about it and if I see another doctor within the practice then they usually have to look it up. I also think that once you have been diagnosed by the consultant and he suggests the Epley treatment whether it works or not there is probably not a lot they can do. I had my scan lying on my good side, they were not very sympathetic and tried to insist I lay on my back, but I stuck to my guns and just burst into tears and in the end they gave way, but I suspect they had to reconfigure the scanner which was probably the reason they were not very helpful. Unfortunately the scan showed I had mouth cancer and have since had radical surgery having had part of my jaw removed, so the BBVP seems mild in comparison. I must make it very clear that the two complaints are not related in anyway, so I would not like anyone to worry. Funnily enough after the operation I had quite a lot of morphine and it never occurred once whilst lying on my back. However since being back at home it has returned.

I have seen various kind of treatments on the internet, has anybody tried them ?

Firstly, am sorry to hear about your cancer problem. The initial experience after your cruise sounds very like Mal debarquement, which is a recognised problem that a lot of people experience after being on a ship. If you Google it you will probably identify with what they say.

Yes, I have heard of that but after the MRI Scan the consultant said that it was definitely BBVP, I have seen him twice since the first appontment and he has never changed the diagnosis. Mine is definitely linked to certain movements of my head, which is why I go out of my way to do nothing that would trigger them off,

Hi, I've just today been diagnosed with BVVP after a few little tests which confirmed my balance prob when i turn over in bed, right to left and also whilst walking, whatever i focus on is jumping around.  If i stand still i have no problems when turning my head.  I have a condition called neurofibromatosis type 2 which is being dealt with at St Marys Genetic Hosp in Manchester, UK. I mentioned my detrioration in balance feeling bobble headed and a smart cookie (neuro physio) took me to one side, explained things and gave me a simple exercise to make my senses work "together". She also did the Dix-Hallpike manoeuvre, which wasnt pleasant but i have to say its now 10 hours since and i have improvement!! she did say it could work, it may not and i may need it again, or it could take a little time.  I couldnt look up but now i can although i'm not supposed to so soon after the manoeuvre.  She was very helpful and drew diagrams etc to explain whats where and it shouldnt be.  I hope this helps you guys and if you havent already had the manoeuvre done, its worth a shot.  It brings on the sensation temporarily and an "eye flicker" confirms the diagnosis.  Fingers crossed for you all.  Dx

I've just started suffering from bvvp and found the first time it happened a very frightening experience. I was at work and alone and didn't have a clue what was going on. I'm a serving Soldier and worried this could spell the end of my career. I love going to the football but I have become concerned if I take my car so far from home I may not be able to get back. I've yet to discover what triggers it.