BPV & Decomp questions - Inner Ear Disorders Message Board

hilley · 01-17-2006, 12:37 AM

Hello everyone,
After reading these posts for months, I have a few questions about BPV and was hoping someone might be able to help.....

At the end of September 05 I woke in the night to severe spinning vertigo and nystagmus. This lasted about 3 weeks and I managed to avoid the vertigo if I kept my head completely still - if I angled it to either side it would come back.
After a few days feeling normal I rolled over in bed and another episode started and is still going on - no vertigo or nystagmus this time but constant dizziness, lighheadedness, brain fog, imbalance , feelings of being pulled or pushed to one side, visual disturbance and problems with movies and TV and, of course terrible anxiety and depression. I also developed insomnia a few days later which is still there. I am too scared to sleep incase I roll over and make it worse. I sleep rigidly on my back and wake every hour or two once I do manage to drop off....

Anyway, ENT said BPV and it could come back (I am a female 31 year old).
So my queries go to anyone with BPV :
Q1 : If it comes back will it be as bad as this time and take as long to compensate? I am in my 4th month now and don't think I could cope with this again...
Q2 : I read somewhere that 20% of BPV recurrs going up to 50% in 5 years

Has anyone had a recurrence ? If so, what was it like? Did it takes months to go? - Subs I read you are now feeling OK for a year or so - do you think the BPV will come back?
Q3 :I don't know how to cope with the threat of this thing - is there anything I can do to stop it coming back? I read on another forum that people were
taking vitb6 - anyone here using this?
Q4 : Should I be sleeping propped up to prevent it coming back? I tried but it hurt my neck....
Q5: How do you get over this? I am now too scared to stay away from home incase it comes back (took me days to be able to walk any distance last time, weeks to be in a car and that is still a huge problem)
Q6 : A decomp question : I got a cold over Xmas and decomped hugely. Will decomp events stop as I become healed or will they carry on for the rest of my life?
My ENT said my brain is learning to ignore the incorrect signals coming from my ear and if my brain is stressed, over tired or I am sick it can't do this as well - I wasn't sure if he meant forever.... Subs , now you are feeling better have you had a cold and not decomped?

Sorry for so many questions and I hope everyone has a dizzy-free day today...

firechick · 01-17-2006, 05:45 AM

Hi There
I have had BPPV and have been vertigo free for 18months now. I still have periods of decomp which throw me back a few months, but am learning to deal with them.
When I got it I had just compensated from a bad infection which resulted in labyrinthitis so I had already gone through the decomp thing for two years and was dealing with a 37% loss in my vestibular system.
What saved my day (apart from this board) was learning about the modified epeley maneuver (MEP). In the top thread on this board (sticky post) there is information on both BPPV and the MEP. I did it and since that day have been vertigo free. You are still young so there is a chance you will never deal with this again. Most recurrences are in older patients as this is a degenerative thing.
Do you know if you suffered any head trauma prior to this, or had a bad cold? I am pretty sure my labs infection messed up my inner ear which caused me to get the BPPV...but as is the case with this thing you can't actually see anything and therfore can only guess what is really going on via symptoms.
By biggest advice to you is to get out there...living in fear of what may happen will only make your life miserable. Dealing with the anxiety and depression are often harder than the compensation phase. Any time we feel something coming on due to a cold or decomp we panic and that only makes the decomp worse.
After doing the MEP some people prefer to sleep upright at 45 degrees for 48 hours and avoid bending etc...others are told to go on as normal. Whatever you are comfortable with or are told to do is fine...but after the 48hours go out there and move.
I found going to the gym was great because I was with a friend who knew what I was dealing with. I would finish my workout and realize I just had an hour of not even thinking about my ear. That is half the battle.
Hope you find some answers here, BPPV is probably the one inner ear problem that has answers and can be fixed. The fact that you may have a recurrence should not stop you from living your life like you did before. I am a firefighter and get myself into some pretty precarious positions at work...I went back to work two weeks after doing the MEP and haven't taken a day off since.
Good luck!
Fc

hilley · 01-17-2006, 07:39 AM

Hi Firechick,
Thanks so much for your message - it really helped. You are right - I am definitely letting this thing rule my life and cancelling things all over the place. I guess it will take a while but I must stop doing that.
To answer your question I didn't have a cold, illness, head injury or anything prior to the vertigo. I went to bed as normal (though my partner had said I looked pale) and then woke at 1am with everything spinning.
Didn't develop a cold or anything either....
Thanks for the advice about the MEP - I'll check it out. My ENT didn't seem keen on doing the manouvre - he said they only do it for people who's brains aren't compensating..... and he doesn't want me to go back until after Easter if I am still having problems.
Do you sleep normally now then? Rolling over and everything? Sorry to be such a wuss about it but sleep is really hard for me - everytime I even angle my head I seem to wake myself up!

Hope you're having a good day

Hilley

firechick · 01-17-2006, 08:24 AM

Hi There
My understanding is that you can't begin to compensate until the crystals have been removed from the canal. You can go the long route and just wait for months for that to happen, or you can do the MEP and be rid of them for good. I can't understand why your ENT wouldn't want to get the crystals out of the canal so you can begin compensation.

If you do the MEP wrong, nothing bad will happen, you just may spin a little. Follow the instructions to the T and you will get relief, possibly immediately.
THe only tricky part here for you though is knowing which ear is affected. I knew only because of my prior infection with labs, as I had a weakness in my right ear I just assumed that was the side the crystals had gone astray. Did your ENT give you any idea as to which side was out. I think Subs has offered suggestions for figuring out which side is affected as you need to do the MEP specifically for the affected side.

Once I did the MEP I slept in a semi-reclined position for a couple of nights and used pillows to prop me up and put some beside me so I wouldn't roll. My bad ear was my right one so I slept with it up and have pretty much done so ever since. I do roll onto my left occasionally and don't suffer any real consequences except some pressure in the back of my head as my brain deals with the new position, just compensating for a new head position I haven't been in much I guess.

Good luck
FC

WhyAmIDizzy? · 01-17-2006, 11:22 AM

What is 'decomp'? I keep reading this term in many threads, but have yet to find out its meaning. Sorry if a stupid question.