BVVP

Posted , 7 users are following.

I have had this condition for about 10 years now and have learnt to live with it as I know what triggers it off. I have had various treatments but nothing really worked. My main trigger is lying on my back. I am alright on my right side and reasonable on my left, but if I lie on my back it is really bad and my whole body jerks,sometimes the attacks last for a couple of days, fortunately for me I have an understanding dentist and hairdresser. I now have to have an MRI scan for a different complaint and wonder if anyone had an tips or advice for me. When I spoke with my surgeon about this he said that was too bad and I would have to find away to deal with it but I really don't know how and this is adding to the anxiety that I already have.

If anybody else has this same trigger point I would really appreciate their help urgently as I go for the scan on Wednesday 23rd October 2013.

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  • Posted

    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??
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  • Posted

    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.
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  • Posted

    How did your scan go?
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    • Posted

      Hi Catherine, sorry to be so late in responding, but a lot has happaned since then unfortunately.  They scanned me on my side, but they were not very happy with me, mumbled something about have to adjust the scanner, but to be honest I did not care and stuck to my guns and they backed down in the end.  Unfortunately the scan showed I had cancer of the jaw.  I have since had part of my jaw removed after an 18 hour operaion, where they removed an artuary, flesh and bone from my arm and transplanted it into my mouth.  I am now left with one side of my face and throat which is completely dead, but they did get all the cancer out and I am still alive thank goodness.  The consultant said that my cancer and BVVP are not connected in any way.  I was hoping that during the operation, they might somehow do something that would cure my vertigo, and whilst I was on morphine it did not effect me at all, in fact I could lie flat and move my head around without going dizzy, but once off of that it returned and I would say that now it is the same as before.  Thats my story up to now.
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    • Posted

      Oh Eileen, i am so sorry to hear this.  Did they do the scan because of you complaint re Vertigo or another reason?  You poor thing.  Maybe morphine is the way to go eh?!!!   I truly wish you well and hope things start looking up for you.xx
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    • Posted

      Hi, cancer nothing to do with vertigo.  Tumour appeared on my gum out of the blue, turned out it was all in the jaw bone, hence it's removal.  None smoker, none drinker and dentist 4times a year would you believe, but still alive, now if I could only get a cure for the BVVP I Would be a contented lady.
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  • Posted

    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.
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  • Posted

    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 ?

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  • Posted

    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.
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  • Posted

    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,
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    • Posted

      So sorry to read about everything your've been through. You seem to have such a postive attiude towards it all. WOW. So glad they were able to remove all the cancer and praying you find your relief to your vertigo. 

      Have your doctors suggested anything to help you? If they say its postional vertigo then they must of done some head manuvers. Did they recommend you do them on your own? Epley and semont maneuvers can be helpful.  

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    • Posted

      Hi, many thanks for your email. I have had the Epley manoeuvre 3 times and it never worked for me. Every day I try to be positive i just hope that one day I wake up and it is a thing of the past. I am lucky to be alive and that's all that matters. Stay strong yourself.

      e

      Emmy

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    • Posted

      How are you doing with the BPPV? Any changes? I was reading an article the other day- that vitamin D deficiencies can trigger vertigo. Have you heard of this? I thought of you becuase of everything you've been through. If they haven't, maybe you can ask your doctor to check your levels at your next visit. You can find articles about it on the web. The only other thing I know that has helped with ongoing vertigo is a pillow system my friend uses. Now she found that doing Epley's helped but never kept it away until she used a simbalance pillow so I'm not sure if that would be helpful for you or not but never hurts to check it out. Hope you are doing well.   
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  • Posted

    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
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  • Posted

    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.
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