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 :confused: 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... :wave:

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

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

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

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

Hilley,
Welcome but sorry that you have to be here. You are definitely in the right place for support and knowledge. I have found more valuable information from the folks here then I have from all of the docs I’ve seen.

I am a 40 year old female and I too have BPPV but w/ Meniere’s symptoms. My BPPV started just the same as yours. I turned over in bed one day and was awaken by vertigo. I was terrified. My heart was racing and I was sweating all out of complete fear. I had absolutely NO knowledge of BPPV and was relying completely on an ENT who also had little knowledge and made me wait it out. He gave me a few generic head exercises and the vertigo lasted for 2 months. Thankfully, I was able to function better than some because my vertigo would only happen when I moved my head backward or if I turned over in bed or when I got up or moved into a reclining position. After the vertigo passed I was left with lots of brain fog, jumping vision, difficulty looking at moving objects and computer screens. In total the entire episode lasted 6 months. Then almost exactly a year from the onset of the first episode the same thing happened again. This time I researched on my own and did the Brandt Daroff exercises at home. The vertigo was gone in less than a week but like you fear took over and I battled insomnia for many weeks. It was a horrible time. I thought I would never get through it. To add to my fears were also new symptoms. The difference for me with this current episode is that this time I was left w/ the same residual symptoms but now I also had tinnitus and ear pressure. I am now in month 8 of recovery and have been stuck for about 2 months at around 90%. This time around and after finding this board I located a knowledgeable otoneuro and was prescribed VRT which was a big help. I still have blips of brain fog and the tinnitus is still there but not as loud as when it began. Now I can usually count on a cold or lack of sleep to bring on the brain fog or to heighten the pitch of the tinnitus. I now have no trouble with sleeping on my side but it took me months to have the courage to try. I do still use 2 pillows though (just cant take the big leap to one yet.) FireChick is so right…you have to get out there. You must keep moving and test your boundaries its part of your compensation. Conquering your fears is very difficult but it is also part of your recovery process. We are all here to help encourage you on that one. Don’t fear the “what if’s. This MAY NEVER again happen to you. Everyone’s experience is very different. Ask lots of questions and please don’t read any of the negative stuff when you are not feeling well.
Take care and keep us posted.

Hi Hilley

...."Subs , now you are feeling better have you had a cold and not decomped?"...

Yes---once I got to the 100% fully compensated point---at about the 13/14 month----cold/flu shots/sore throat...etc....---no(never) decomp...ever(knock on wood)....

..."read you are now feeling OK for a year or so - do you think the BPV will come back?"...

Been at 100%---about 30 months---to date---and will be 3 yrs---in Aug 06....as for coming back....research...shows....(they say)...50% within five yrs...but that is driven...by...the over 50 group

......I strongly suspect...they that they(medical types)...have no real hard data....to back that up...and that...the data the do have is "suspect"....with misDx's....on recurrences...unless....the BPPV...is the result of head...trauma....for someone ur age.....doubt u will ever see or hear from "it" again...

I mean....heck....most...can't even "call it" right on the first---Go...let alone a "rematch".......

:cool:

Hi Subs,
Thanks for replying to me :wave: - you are right about the mis-diagnosis thing. I am now beginning to wonder if mine is a virus rather than BPV as 2 other people at work have exactly the same symptoms (both in their 20s/30s and no head trauma). The respective doctors said they are seeing lots of cases at the moment so maybe there is something going around.
The girl who has recovered quickest was prescibed Stemetil for a whole month (a bit like Antivert I think) whereas I was told to take it for the minimum time possible. Very strange to get such conflicting info.

Hope you are having a good day


Hi Adrienne,
Thanks so much for your reply too - this board is really great. I know what you mean about reading the bad posts when you are depressed - sometimes I think there is no hope! I just can't seem to get past the fear that this WILL return and i am doomed! Very melodramatic I know but the anxiety can really take hold of me..... My first thing to conquer is sleep I think. I have only been getting max 4 or 5 hours broken sleep a night for the past 10 weeks so I guess this must be having an effect. Easier said than done though! My body now seems to wake me every time i move my head..... I sleep rigidly on my back which isn't that comfortable either. I'm hoping it will just improve with time as I become more confident. I guess I'm not as strong as I though I was - I certainly never realised I could cry so much ;)

Hope you are 100% real soon,

Hilley.