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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We strongly advise anyone wishing to take up vrt or start/change/stop medication should consult their doctor first.

Informative, easy-to-read and with a personal touch - love it Agnes!

Sid xx

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"There are 3 kinds of people. Those who can count and those who can't"


We strongly advise anyone wishing to take up vrt or change/stop medication should consult their doctor first.

Really good Agnes.
m.xx

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Nicely Put! Well done!

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"Fate, it seems, is not without a sense of irony."




We strongly advise anyone wishing to take up vrt or change/stop medication should consult their doctor first.

wow Agnes,
That was perfect, it's like your right in my head. You know exactly what i'm experiencing.
Thanks Robin

thankyou agnes bad day for me today but that is just how i feel ty love lyn xxxx

Hi again Agnes

After reading your info on BPPV I don't believe I have the correct symptoms for this and now do believe that I may have been misdiagnosed. And this is also why I came on here. Although it's possible I may have MAV as I do have the right symptoms for that, I do have some Labs symptoms too.

I feel better when I lie down for instance.
My symptoms are 24/7 but with worse bouts from time to time.
I don't have tinnitus, full ears etc.
It didn't start with a bout of spinning either, but after two migraine attacks and a dose of flu.
My feeling of imbalance was constant.
I'm totally disorientated in the dark.
I suffer chronic fatigue every few days and constantly feel tired.
I wake a lot at night and have very disturbed sleep.
Travelling in a car makes me worse. (I haven't seen any mention of this).
I walk as if drunk.
I have to be careful walking on stairs.
Looking up definitely makes me worse.
When focusing for too long I get spinning. For instance at a school meeting yesterday I was looking at a teacher and I had a bout of spinning and had to focus my eyes on something else and work at rebalancing myself.
The VRT exercises haven't helped.
Walking helped more during good periods but is a bit dodgy at first and has to be built up.
I don't have numbness or tingling.

My symptoms at the beginning were indeed spinning when turning my head. I felt really sick constantly and couldn't read as this caused motion sickness as did using the computer. Every few days I was totally incapacitated for about a day and a half. I could barely lift my head for the pillow, and going to the toilet was an effort. I did have a hearing problem but it turned out to be ear wax and after it was cleared I had no other ear problems. I didn't improve for five months but then the constant sickness left my and my imbalance improved but didn't go. Then I moved house and had a relapse. Back came the sickness days in bed etc. I improved again but not as well as I had been before moving. Then recently I became very bad again. The sickness was worse, imbalance, every few days back in bed, chronic fatigue, can't read with being sick, motion makes me much worse etc. I have managed not to get depressed about it. I have found that my efforts with relaxation techiniques, teas, essential oils, and supplements like magnesium, have helped a little bit, but as I only recently started trying this, we shall see.

If anyone else has symptoms very similar to mine, I would be glad and gratefull to know about it. As soon as poss, I will go to another specialist but as I have to pay upfront here in Belgium it will have to wait a little while.

Best wishes
Maria

Hi Maria

Sorry sweetie, i cant really make a guess at what you may be suffering from but i can tell you about how common your symptoms are/arent if that helps a bit.

with bppv you feel worse lying down
although i dont have spinning 24/7 i have the other symptoms all the time
not everyone with labs/bppv suffers from tinnitus though it is quite common
sounds like whatever you have has stemmed from the migraine/flu attack but i might be wrong
i too suffer from constant imbalance
my night vision is terrible and i hate having to walk in the dark
for a few months i had disturbed sleep, waking up every hour or two and had very vivid dreams which i still get from time to time.
fatigue is also very common with labs/bppv
i too have to be careful on stairs sometimes
looking up is bad for me
at the start my focus was bad and i went dizzy
vrt can take months to help with this
not everyone gets numbness
reading and computer the same as concentration

hope this helps a little, let me know if you still worried about things maria, and let me know if you go for a second opinion sweetie i would be interested to know the results. take care and keep your chin up

Love and hugs
Agnes xxxxxxxxxxxxxxxx

__________________





We strongly advise anyone wishing to take up vrt or start/change/stop medication should consult their doctor first.

Ahh thanks Agnes

That helps a lot. Could be one or the other I guess, but I'm definitely not worse lying down but better. So I shall go back to the exercises and try the walking (when my twisted knee gets better), and the calming methods. Eventually, I'll get to see a doctor lol! I'll let you know. In the meantime I'll let you know what things help. I have to say that Lemon Balm (Melissa) tea, and Linden do help and you can mix them together in a pot. I prefer the taste of Chamomile but it doesn't help as much so sometimes I use it to make the other teas taste better lol. A bath in the oils I mentioned in my other reply, also did have me feeling better the day after, the ones I mentioned don't seem to have contraindications but it should be double checked. The Epsom Salts for the bath have magnesium which is great for anti-anxiety and depression, as is magnesium supplements but calcium should also be taken later the same day as it helps the magnesium work. B Vits, and Vit C, also help.

The walking is good but it has to be kept up otherwise the benefits seem to be lost, and it is tough at first.

Thanks again

love Maria xxx

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