Hi all, we thought it might be helpful to some of you if we put in a little bit about bppv.
before you read on, please remember, I am not a doctor, just a fellow sufferer. I have done a little background research and used my own experience of bppv to write this up. Hope it helps.
Here goes.
If you suffer from full spinning vertigo when lying down, turning over in bed, bending down, looking up or when you sit up in bed to get up then the chances are you may have some form of bppv.
Unlike labyrinthitis there is no "8 week duration" expected as bppv is a totally different illness albeit the symptoms are very similar (this is what causes alot of confusion). Basically labs sufferers feel better when they lie down and bppv sufferers feel worse when they lie down. There are various things which cause bppv, someof them being, head injury, inner ear degeneration (usually in oder people), and, although its unusual it can be caused by a virus. Half of all cases are known as "idiopathic" which means they have no known cause, it just happens. Treatment for most cases is usually an epley maneuver.
In some cases the crystals may be considered too deep within the inner ear or if you have atypical bppv then an epley is not always viable. If an epley is done it may need to be repeated a few times before it is successful and the first one should always be carried out by either a gp or at hospital. If the epley fails or can't be done then the Brandt Daroff exercise is recommended. This is taught to you by a physiotherapist who is trained in vrt (vestibular rehabilitation therapy) and wil usually include some balance and gaze exercises as this helps compensation to take place ( I am reliably informed by my physio that some compensation does take place with bppv though not as much as with labs). It is recommended that you dont take vestibular suppresants eg: stemetil, betahistine for any longer than a couple of weeks as they can restrict compensation but speak to your doctor before you stop taking any medication as they know best.
A link to a bppv website has been added to the forum in the links section. This link describes the causes, some of the tests and treatment for bppv. It also explains atypical bppv. There are also diagrams of the inner ear and of the Brandt Daroff exercise. I found the site to be very informative. You can check that link out HERE
My own experience started 3 years ago. At the beginning my only symptom was full spinning vertigo when I moved my head. This settled after a few weeks and I was left with: dizziness, rocking feeling, full ears and a stuffy head.
As time passed more symptoms "popped" up and my full symptoms now are:
Full spinning vertigo (only occassionally)
Dizziness (lightheaded and out of synch)
Rocking sensation
Full ears
Stuffy head
Tinnitus
Marshmallow feet (not all the time)
Tingling numb feeling in hands, arms and round right eye
Some people will also experience nausea/vomiting and unfortunately, some will also suffer from anxiety/panic attacks.
Not everyone will experience all of these symptoms and please dont be alarmed by any new symptoms. Because you have inner ear dysfunction your brain gets confused and starts sending mixed signals.
The tests I have had are:
Dix hallpike maneuver (without and then with frenzel goggles which help detect nystagmus)
Various balance tests eg; standing on a cushion with eyes closed
Shaking my head vigorously from side to side while looking down (again with frenzel goggles)
Visual evoked potential
Lumbar puncture
Be aware that the dix hallpike maneuver does not always show nystagmus so dont panic if you dont show any, it is quite a common occurrence.
If you have been diagnosed with bppv dont despair, the spinning will settle and only happen now and then and you will be able to cope with the other symptoms and lead an almost normal life, and of course the vrt will help, so stick with it.
Please also refer to the bppv section in Emma and Ilias site at www.labyrinthitis.org.uk this too is a very helpful site.
Love and hugs
Agnes xxxxxxxxxxxxxxx
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