Hi.
I'm new to the site... and I was wondering if I could ask you some questions...

I was diagnosed wih bppv in may 2005... but my first symtom was in march 2005 and that only lasted 10 days and I was back to normal.

But in May 2005 I woke up and it happened again, so I went to an ENT specialist and had tests, MRI all done. My left ear is the bad one.
I don't roll over in bed and I never sleep on my left side since May 2005.

I never had an ear infection nor a car accident... but I did get hit in the head but it wasn't that hard... so I just don't understand how I got this...

But for some reason, this second attack still leaves me with a floating feeling on and off and it took me a long time to actually feel ok...

How come this time it was s bad and took me a longer time to feel ok?

How long have you had bppv?
Do you get alot of attacks frequently?
As the years pass, people with bppv, does it occur more frequently and does it get worse?

Is it true that there are some people who was diagnosed with bppv and only had one or two attacks and it never occured again?

I'm sorry for so many questions... I'm so scared and ENT's all say something different...

Thanks...

Hi

...."sorry for so many questions"....

Not a problem...not trying to give u a short answer---but much of what you asked is covered in the top post on this board "information archive" the "Sticky" post and then the item on BPPV which leads to the Northwestern Univ web site of Dr/Prof Hain...

If you have read it---my answers can be more focused...

..."I'm so scared and ENT's all say something different..."...

Not unusual for the ENT's to say something different---since most---don't deal with it that often....& the "B" in BPPV stands for benign...so it is not life threating...plus for 99% it goes away---takes longer for some then others..and usually starts---exactly as u described---for me it did...got to run out now----I'll check back...later...to see if you had read the Northwestern Univ web site...they are one of the best in this medical area...which has very few medical types who are---any good----in it...


:cool:

Hi Maryanne,

Sorry to butt in here, but as a recovered veteran of the BPV wars, I thought I could maybe add some thing of value here.

I agree with Subs that you should check out that article -- very helpful.

I was like you and suffered no head trauma, etc. to precipitate the first BPV attack (I had two of them, 6 months apart). I was lying on my back in a yoga class, turned my head to the right, and BANGO! the world started to spin. So, it can happen like you've described with seemingly no apparent correlation to anything. The docs say about half of people with BPV have no obvious cause.

That floating feeling you describe, lovingly referred to as "brain fog" by those of us on this board is very common and par for the course with inner ear stuff. Your brain is in a fog, of sorts, trying to compensate for the problem/wacky signals it's receiving from your inner ear. It will subside, but it just takes time, and the problem is everyone is different. Don't let a doctor fool you into believing it will go away "within 6 weeks" or whatever specifics they want to put on it. They don't really know, and like your first episode, some people get over it very quicky, while others, like myself, took about 2 years to feel completely normal again. Subs took about 14/15 months.

It is true that there are people who have 1 or 2 attacks and then never have it again. According to my ENT, the majority of people are actually this way, though due to the aging process, they actually see it more commonly in the elderly than in other age groups, so it may crop up again late in life.

I was like you in that I had a first attack, but the second one seemed harder to recover from. I had the Epley maneuver done when the second attack hit, and it helped immensely. You should look into that if you haven't already. I think leaving those crystals in there to "dissolve" or whatever they think they'll do in there can be a mistake, and I'm not fully convinced it wasn't a mistake in my case. Had I had the Epley done at the outset of the first episode, those crystals would have been moved out of the canal and wouldn't be able to irritate my vestibular system in the way they did. I suspect that irritation caused by leaving them in there for 6 months is what caused the brain fog and other effects to linger for so long.

Anyway, read the stuff, keep talking to Subs (he's brilliant), and check into the Epley maneuver.

Be well,
Terri

Hi

...."sorry for so many questions"....

Not a problem...not trying to give u a short answer---but much of what you asked is covered in the top post on this board "information archive" the "Sticky" post and then the item on BPPV which leads to the Northwestern Univ web site of Dr/Prof Hain...

If you have read it---my answers can be more focused...

..."I'm so scared and ENT's all say something different..."...

Not unusual for the ENT's to say something different---since most---don't deal with it that often....& the "B" in BPPV stands for benign...so it is not life threating...plus for 99% it goes away---takes longer for some then others..and usually starts---exactly as u described---for me it did...got to run out now----I'll check back...later...to see if you had read the Northwestern Univ web site...they are one of the best in this medical area...which has very few medical types who are---any good----in it...


:cool:

Thankyou for your reply... and for all the great info...
I know that it's been 2 years that you've hadn't had an attack... but do you roll over and sleep on your bad ear? Or did you have to change your lifestyle?
I lay flat on my back when I sleep... can the crystals fall again and will I get another vertigo attack? I hope that you're doing well... and someday... I hope I will too...

Thankyou once again...

maryanne-k

Hi Maryanne,

Sorry to butt in here, but as a recovered veteran of the BPV wars, I thought I could maybe add some thing of value here.

I agree with Subs that you should check out that article -- very helpful.

I was like you and suffered no head trauma, etc. to precipitate the first BPV attack (I had two of them, 6 months apart). I was lying on my back in a yoga class, turned my head to the right, and BANGO! the world started to spin. So, it can happen like you've described with seemingly no apparent correlation to anything. The docs say about half of people with BPV have no obvious cause.

That floating feeling you describe, lovingly referred to as "brain fog" by those of us on this board is very common and par for the course with inner ear stuff. Your brain is in a fog, of sorts, trying to compensate for the problem/wacky signals it's receiving from your inner ear. It will subside, but it just takes time, and the problem is everyone is different. Don't let a doctor fool you into believing it will go away "within 6 weeks" or whatever specifics they want to put on it. They don't really know, and like your first episode, some people get over it very quicky, while others, like myself, took about 2 years to feel completely normal again. Subs took about 14/15 months.

It is true that there are people who have 1 or 2 attacks and then never have it again. According to my ENT, the majority of people are actually this way, though due to the aging process, they actually see it more commonly in the elderly than in other age groups, so it may crop up again late in life.

I was like you in that I had a first attack, but the second one seemed harder to recover from. I had the Epley maneuver done when the second attack hit, and it helped immensely. You should look into that if you haven't already. I think leaving those crystals in there to "dissolve" or whatever they think they'll do in there can be a mistake, and I'm not fully convinced it wasn't a mistake in my case. Had I had the Epley done at the outset of the first episode, those crystals would have been moved out of the canal and wouldn't be able to irritate my vestibular system in the way they did. I suspect that irritation caused by leaving them in there for 6 months is what caused the brain fog and other effects to linger for so long.

Anyway, read the stuff, keep talking to Subs (he's brilliant), and check into the Epley maneuver.

Be well,
Terri

Hi Terri,

Thankyou so much for your info...
I'm still having good days and bad... I'm so scared...
How many times have you had an attack?
Do you get them anymore?
Do you ever roll over in bed?
Do you ever sleep on the bad ear?
I try to believe that I could be one of the lucky ones that never get it again... but all the people on the site seems to get it occasionally... even my own ENT had it for 25 years, and he's a doctor... and he said that he gets attacks 2 times a year.
I've only been married for a year and a half, I was so happy... but now I'm so scared and now I don't know if I could have kids... with this condition. I feel like my dreams have been shattered... I don't mean to be selfish... I know that there are more serious illness out in the world...
Is there surgery for this?

Thankyou...
sorry for so many questions...

maryanne-k

Hi Maryanne

..."do you roll over and sleep on your bad ear?"....

Until recently---I did not---within the past month---have been able to do that---with no problems---so that would be---about 25/26 months after---100% compensation happened...

..."can the crystals fall again"....

Yes---until they stick or dissolve---certain movement(positioning) of ur head---can cause them to reenter the canal...

..."and will I get another vertigo attack?"...

Normally that would happen since the "mass", i.e., the rocks or their fragments have reentered the canal.....causing an imbalance in signals---between the good ear and the bad ear's signal input to the Brains equilibrium center---in that situation---the brain can not resolve---it's(the body's) position---in space---and u "spin".....

The rocks need to get out(or dissolve) and stay out---for compensation to begin/occur.....that takes time...since...the rocks(mass) in the canal---has screwed up---all of the brain's calculations---on ur balance, vision, etc...that u have been developing since u first moved as an infant----once the rocks are out---the brain---can---redo/create/reestablish--the calculations necessary to regain ur ability---to automatically---maintain---ur balance---freeing up---cognitive resourses......that takes time---VRT's & rocks out...

:cool:

Hi Subs
I am very interested to read that you have only recently been able to sleep on your right side. I am feeling awesome these days, pretty much my old self and then some (you know, the improvements that come with learning how to deal with this crap). But interestingly, I still do not feel comfortable lying on my right side, or even on my back with my head off to the right side. If I do nothing actually happens but I feel "off" somehow, like vertigo could come on but never does.
Just happy to know that one day I may go back to normal bed rolling again. (I have actually changed my kids room around so when I tuck them in at night or wake them in the morning I can lie down on my left side without feeling funny!!)
Hope you are well otherwise, glad to be amongst the land of the living again.
Have had the odd bad day here and there but Now I know, this too shall pass!
FC

Hi Firechick

..." still do not feel comfortable lying on my right side, or even on my back with my head off to the right side. If I do nothing actually happens but I feel "off" somehow, like vertigo could come on but never does."...

Exactly---it never did/does...so one day I just said..."xxxx it"...and just started doing it...felt little strange---just an "off" kind of feeling...then nothing after about a week of doing it

---thinking back---it prob was just---forcing the brain to deal with it---as in VRT's

---the brain only deals with what you force it to deal with....should have realized---that was what was going down....

Glad to hear about how well ur doing....hard to believe...given---where we both started...that we are here now....Yippie!!! (& knock on wood)

:cool:

Hi Terri,

Thankyou so much for your info...
I'm still having good days and bad... I'm so scared...
How many times have you had an attack?
Do you get them anymore?
Do you ever roll over in bed?
Do you ever sleep on the bad ear?
I try to believe that I could be one of the lucky ones that never get it again... but all the people on the site seems to get it occasionally... even my own ENT had it for 25 years, and he's a doctor... and he said that he gets attacks 2 times a year.
I've only been married for a year and a half, I was so happy... but now I'm so scared and now I don't know if I could have kids... with this condition. I feel like my dreams have been shattered... I don't mean to be selfish... I know that there are more serious illness out in the world...
Is there surgery for this?

Thankyou...
sorry for so many questions...

maryanne-k

Hi Maryanne,

I remember that scared feeling, and it doesn't really matter how many people tell you that it's going to be okay, if you're like me, you still have your own stuff to deal with, mentally, regardless of what other people have said. At times it may feel like, "Okay, I can deal with this, today I feel okay" and then there's other days that are, well, you know what they are. That said, I most certainly did take comfort in what others said, particularly here on this board. I found strength in the stories of those who "made it out", like Subs who has been a god-send.

To answer your questions, as far as the violent spins during a BPV attack goes, I only had it twice. I had the Epley after the second attack, and that was that. But for me the real hell was the brain fog, cognitive issues, just plain fuzzy not feeling like myself that stuck around for months that was the hard part. I've never been so thrown off my center in my life. There was the anxiety, especially when going out or into new situations where I was unsure of how I'd feel that were real mind blowers. Somehow I pushed forward and got through, though it was from sheer will. That's not to say there weren't situations I didn't avoid now and then, but sometimes it just wasn't possible.

I have not had another episode since my second, which was in June 2003. My ENT was on the fence, as you may see other docs are in the research, about whether you need to sit up for 48 hours after the Epley or whether you need to be scared to sleep on the effected side, so he told me to just act normally, which I did. I was lucky in that he was right, and I was also lucky in that I didn't know any better, and so I chalk it up to the power of the mind. I've always just slept as I did before and didn't have any problems. Problem with this stuff is that there are universals (such as brain fog, etc.) and then there is a whole host of other stuff that is very individual (i.e., everybody reacts in their own way and heals in their own time). BUT, with that said, the thing is don't hang on to the ones who have problems. By that I mean when you hear stories of people who had it really badly, don't automatically assume that's going to be you when there are plenty of others out there like me who did not have had it so badly. You could be me too. You know, like your ENT who had it for so many years -- SO WHAT. You're not him/her. REMEMBER THAT. Don't buy into it having to be this way or that. You are you and your experience is unique. Feel what you're feeling, keep moving and living, try to keep your chin up, and KNOW WITHOUT DOUBT that you will be okay. You will.

I know this is scary because it takes away everything you thought you knew about yourself for sure. It changes you, but you learn more about what you can handle than ever before. You've only been married 1-1/2 years; try to focus on the joy you feel about your life with your new husband -- all that promise and hope for a great future. It's all still there. And as for kids, well, you should post to Ilia here (willsmom). She's got 3 and made it through this stuff. I don't have kids, but I have a puppy now, and I have to say having her and being able to think and care for someone else besides worrying all the time about my own health has been a gift that she's given me. You may wonder whether you can do it, but then there they are and they need you and you just get through. Sure some days are crap, but they are that anyway even without this stuff. The thing is that you're blessed to be someone's mother and they need and love you and you just rise to the occasion and do what you need to do. When the time is right for you, of course. I'm just suggesting that you shouldn't "throw the baby out with the bathwater" which is an American phrase (I'm not sure where you are from) that means don't give up everything because of this one setback.

Your dreams have not been shattered. They've just taken a different route than you expected, but then that's life. Trust me, it's only a small detour. Find lessons in it and be thankful to still be alive and married to someone you love and fortunate enough to be looking forward to a hopeful and happy future. It's there -- reach out and grab it with all you've got.

Terri

Wow, Terri,
THat post is the truth, the whole truth and nothing but. I hope a lot of people on this board who are struggling read this one, regardless of their diagnosis. This board has been a Godsend as far as information, empathy, support etc but you are so right when you say that everyone is different and will deal and heal in their own way.
My kids were 5 and 6 when I got hit with labs, and yeah, it was murder trying to cope day to day with their issues and daily life with two very active kids. But it changed their perspective of me from being their mom, the one who cares for them, never fails to be there etc to someone who is vulnerable and needed to be taken care of for a time. The motivation to get better for them is partly what helped my healing process. I knew I needed to get my act in gear when my daughter said to me "Mom, how come you are always lying on the couch and you don't do stuff anymore". talk about a heartbreaker, and a jumpstarter at the same time.
I also learned to look at it from the perspective of having an illness and not BEING the illness.
THanks for putting that down so elequently, I know when I was in the thick of things it was so good to hear from people like Subs who have been there and have healed. I am pretty much there now, and I will never forget the help from all the vets here.

Hi Firechick,

Glad you liked it. I also LOVED your comment about having an illness and not being the illness. Couldn't have said it better myself!

Cheers,
Terri

Hi Maryanne

..."do you roll over and sleep on your bad ear?"....

Until recently---I did not---within the past month---have been able to do that---with no problems---so that would be---about 25/26 months after---100% compensation happened...

..."can the crystals fall again"....

Yes---until they stick or dissolve---certain movement(positioning) of ur head---can cause them to reenter the canal...

..."and will I get another vertigo attack?"...

Normally that would happen since the "mass", i.e., the rocks or their fragments have reentered the canal.....causing an imbalance in signals---between the good ear and the bad ear's signal input to the Brains equilibrium center---in that situation---the brain can not resolve---it's(the body's) position---in space---and u "spin".....

The rocks need to get out(or dissolve) and stay out---for compensation to begin/occur.....that takes time...since...the rocks(mass) in the canal---has screwed up---all of the brain's calculations---on ur balance, vision, etc...that u have been developing since u first moved as an infant----once the rocks are out---the brain---can---redo/create/reestablish--the calculations necessary to regain ur ability---to automatically---maintain---ur balance---freeing up---cognitive resourses......that takes time---VRT's & rocks out...

:cool:

Hi Subs,

Thanks for the info... you've been great help!
But there's something I'm still confused about...
If the crystals stick, then how can they fall again and cause an attack?
and if the crystals dissolve, then wouldn't we never get another vertigo attack?
Since you've been doing great... does it feel uncomfortable to sleep on the bad ear?
Oh! I'm going to see another ENT specialist and he wants me to go through all the tests again... can the tests trigger another attack?
How did you know that you had bppv?
Wish you were an ENT doctor ^.^
You've been very understanding and helpful! Thankyou
I'm so happy that you're doing great! Hope someday I'll be doing great too...

marryanne-k

Hi Maryanne,

I remember that scared feeling, and it doesn't really matter how many people tell you that it's going to be okay, if you're like me, you still have your own stuff to deal with, mentally, regardless of what other people have said. At times it may feel like, "Okay, I can deal with this, today I feel okay" and then there's other days that are, well, you know what they are. That said, I most certainly did take comfort in what others said, particularly here on this board. I found strength in the stories of those who "made it out", like Subs who has been a god-send.

To answer your questions, as far as the violent spins during a BPV attack goes, I only had it twice. I had the Epley after the second attack, and that was that. But for me the real hell was the brain fog, cognitive issues, just plain fuzzy not feeling like myself that stuck around for months that was the hard part. I've never been so thrown off my center in my life. There was the anxiety, especially when going out or into new situations where I was unsure of how I'd feel that were real mind blowers. Somehow I pushed forward and got through, though it was from sheer will. That's not to say there weren't situations I didn't avoid now and then, but sometimes it just wasn't possible.

I have not had another episode since my second, which was in June 2003. My ENT was on the fence, as you may see other docs are in the research, about whether you need to sit up for 48 hours after the Epley or whether you need to be scared to sleep on the effected side, so he told me to just act normally, which I did. I was lucky in that he was right, and I was also lucky in that I didn't know any better, and so I chalk it up to the power of the mind. I've always just slept as I did before and didn't have any problems. Problem with this stuff is that there are universals (such as brain fog, etc.) and then there is a whole host of other stuff that is very individual (i.e., everybody reacts in their own way and heals in their own time). BUT, with that said, the thing is don't hang on to the ones who have problems. By that I mean when you hear stories of people who had it really badly, don't automatically assume that's going to be you when there are plenty of others out there like me who did not have had it so badly. You could be me too. You know, like your ENT who had it for so many years -- SO WHAT. You're not him/her. REMEMBER THAT. Don't buy into it having to be this way or that. You are you and your experience is unique. Feel what you're feeling, keep moving and living, try to keep your chin up, and KNOW WITHOUT DOUBT that you will be okay. You will.

I know this is scary because it takes away everything you thought you knew about yourself for sure. It changes you, but you learn more about what you can handle than ever before. You've only been married 1-1/2 years; try to focus on the joy you feel about your life with your new husband -- all that promise and hope for a great future. It's all still there. And as for kids, well, you should post to Ilia here (willsmom). She's got 3 and made it through this stuff. I don't have kids, but I have a puppy now, and I have to say having her and being able to think and care for someone else besides worrying all the time about my own health has been a gift that she's given me. You may wonder whether you can do it, but then there they are and they need you and you just get through. Sure some days are crap, but they are that anyway even without this stuff. The thing is that you're blessed to be someone's mother and they need and love you and you just rise to the occasion and do what you need to do. When the time is right for you, of course. I'm just suggesting that you shouldn't "throw the baby out with the bathwater" which is an American phrase (I'm not sure where you are from) that means don't give up everything because of this one setback.

Your dreams have not been shattered. They've just taken a different route than you expected, but then that's life. Trust me, it's only a small detour. Find lessons in it and be thankful to still be alive and married to someone you love and fortunate enough to be looking forward to a hopeful and happy future. It's there -- reach out and grab it with all you've got.

Terri

Hi Terri!

Thankyou so much for all the great info... you've been so kind and understanding! You and Subs are my angels... ^.^
I've had my first attack March 13, 2005 and my second May 2, 2005... the first time, I didn't think anything of it, because I was myself 100% within a week but the second time, I was
horrified, and I'm still recovering. I knew the second time it was something serious, so I got all these tests done, and MRI's and all these ENT specialists, and I had the epley performed, because I was diagnosed with BPPV.
I was so scared and angry... I pray every night for a miracle... that all this will all go away forever and never come back again...
How did you know that you had BPPV?
What sort of tests did you have done?
Do the crystals really dissolve?
Can you still exercise or will that move the crystals?
Did you ever get ear pain, or ear crackling, or a faint ring in your ear?
What position is the best to sleep, for people who have BPPV?
Is sleeping on your back, bad?
You mentioned that your doctor told you to act normally and you do...
does that mean you roll over in bed and sleep on the affected ear?
I try but I still feel this wooziness... it's better now but I feel like it might start again, when I try to lay on my affected ear.
Can this affect the good ear too?
Writting to you and Subs makes me feel less scared and hopeful! Thankyou so much...
I'm trying very hard to live each day, with a positive attitude and a big smile...
Sorry for all these questions... my head is full of them...
Thankyou so very much for everything!
Would it be ok... if I kept writting to you guys?
I'm so happy that you're doing great!
Hope someday I can too...

marryanne-k

Hi Subs,

Thanks for the info... you've been great help!
But there's something I'm still confused about...
If the crystals stick, then how can they fall again and cause an attack?
and if the crystals dissolve, then wouldn't we never get another vertigo attack?
Since you've been doing great... does it feel uncomfortable to sleep on the bad ear?
Oh! I'm going to see another ENT specialist and he wants me to go through all the tests again... can the tests trigger another attack?
How did you know that you had bppv?
Wish you were an ENT doctor ^.^
You've been very understanding and helpful! Thankyou
I'm so happy that you're doing great! Hope someday I'll be doing great too...

marryanne-k

Hi Marryanne

Good questions!

.."If the crystals stick, then how can they fall again and cause an attack?"...

If they stick and stay stuck---they do not fall out---but....sometimes---not always---a person will move(positioning) their head in a certain way--and the rocks come lose again---since---they have not had time---to adhere--completely---which is one of the reasons some Doc's will have you wear a neck brace and sleep in a 45deg position---like in a recliner---for 48 hours after the Epley....some Doc's don't think those two things help(as in Terri's Doc's case)...so they just tell you to go about ur normal business....

..."if the crystals dissolve, then wouldn't we never get another vertigo attack?"...

Correct---if all the rocks---and any fragments of those rocks---dissolve---so that there is no "mass" left in the canal---there will be no imbalance between the left/right vestibular system---signals to the brain's equilibrium center--so there will be no vertigo---if---the root cause of the vertigo---was--the rocks...

In any case ear rocks sticking and/or dissolving is the "prevailing theory"---but they(medical types) don't know for sure since there is no way---short of an autopsy---to directly exam---the inner ear---so all testing u and I and just about everyone else has been through---is "indirect testing"---for example---when they do the ENG---watching ur eyes---move about---they know--that the Vestibular System controls ur eye movements---and the way---when working it should move them(eyes)---if they(eyes) do not move---the way they should---with a test stimulation---they(Doc's) can infer---what the problem "might be"---run enough tests---correctly(always a big'ie)---collect enough results---and u can eliminate possibilities---that don't conform to the data---and----come up with the highest probable cause---better known as an "educated guess"---that's indirect testing---prob important to remember that ur inner ear---is smaller then a "dime"..considerably so...

..."does it feel uncomfortable to sleep on the bad ear?"...

Now it does not---but it took me 24/25 months after 100% compensation to get there...

..."How did you know that you had bppv?"...

In the beginning I didn't---know---had no idea---what was happening---ENT said Lab's---viral infection of the inner ear---after doing some research---using the Northwestern Univ web site---listed in the "Sticky" Information Archive....I read about one of the "Primary Signs"---symptoms of BPPV---and experimented---on myself

---and sure enough---it was there...so the next Doc---I saw---was a Neurologist...and I asked him---and told him---about this "tell tale" symptom...that I had----sure enough he did a couple of maneuvers and confirmed it

---went back to the ENT with the Neurologists report---and he then said...Yep it was Lab and it turned in BPPV...at which point I "dumped" him---not because---that can not happen

---in fact it is kind of usual for Lab to turn into BPPV since the Lab infection weakens the inner ear structure---allowing any ready to roll rocks---to roll on out

---I dumped him because he did not take the time on the initial visit to explain that it was a distinct possibility that---that could happen...

..."can the tests trigger another attack?"...

Yes---if there are any rocks or fragments still in the canal---and they were the root cause for the vertigo---they can...but all the tests do is simulate mo vents u could possibly make & stimulate the inner ear canal...trying to replicate some of the movements u might make--and record the results...with a couple testing exceptions.....however if the rocks are out---it is not likely.

How are u??

:cool:

Hi Subs,

Just wanted to thank you for sticking around on the board and helping others out so much. You are an invaluable asset and I so enjoy reading your posts. They always make me feel better and help to keep me positive. You are so informative. We should all just start coming to you for medical care ;)

Hi Terri,

I'm so glad you are back on the boards. Your post was so inspirational and really hit home with the kids issue. I was suppose to have been trying for a 2nd when I got ill and well I'm 34 now and still so sick, but have doubts that I'll ever get that opportunity again (heck, I just want to be well to enjoy the one I have) with my clock ticking. I'd be afraid if I was fortunate enough to have this go, to screw something up with my body to trigger it again. Anyway, your words were so comforting in your posts.

Geez, maybe Subs could be my doctor and I could come to Terri for mental therapy. I'd be fixed in no time. ;)

Thanks,
Gloria :wave:

Hi Marryanne

Good questions!

.."If the crystals stick, then how can they fall again and cause an attack?"...

If they stick and stay stuck---they do not fall out---but....sometimes---not always---a person will move(positioning) their head in a certain way--and the rocks come lose again---since---they have not had time---to adhere--completely---which is one of the reasons some Doc's will have you wear a neck brace and sleep in a 45deg position---like in a recliner---for 48 hours after the Epley....some Doc's don't think those two things help(as in Terri's Doc's case)...so they just tell you to go about ur normal business....

..."if the crystals dissolve, then wouldn't we never get another vertigo attack?"...

Correct---if all the rocks---and any fragments of those rocks---dissolve---so that there is no "mass" left in the canal---there will be no imbalance between the left/right vestibular system---signals to the brain's equilibrium center--so there will be no vertigo---if---the root cause of the vertigo---was--the rocks...

In any case ear rocks sticking and/or dissolving is the "prevailing theory"---but they(medical types) don't know for sure since there is no way---short of an autopsy---to directly exam---the inner ear---so all testing u and I and just about everyone else has been through---is "indirect testing"---for example---when they do the ENG---watching ur eyes---move about---they know--that the Vestibular System controls ur eye movements---and the way---when working it should move them(eyes)---if they(eyes) do not move---the way they should---with a test stimulation---they(Doc's) can infer---what the problem "might be"---run enough tests---correctly(always a big'ie)---collect enough results---and u can eliminate possibilities---that don't conform to the data---and----come up with the highest probable cause---better known as an "educated guess"---that's indirect testing---prob important to remember that ur inner ear---is smaller then a "dime"..considerably so...

..."does it feel uncomfortable to sleep on the bad ear?"...

Now it does not---but it took me 24/25 months after 100% compensation to get there...

..."How did you know that you had bppv?"...

In the beginning I didn't---know---had no idea---what was happening---ENT said Lab's---viral infection of the inner ear---after doing some research---using the Northwestern Univ web site---listed in the "Sticky" Information Archive....I read about one of the "Primary Signs"---symptoms of BPPV---and experimented---on myself

---and sure enough---it was there...so the next Doc---I saw---was a Neurologist...and I asked him---and told him---about this "tell tale" symptom...that I had----sure enough he did a couple of maneuvers and confirmed it

---went back to the ENT with the Neurologists report---and he then said...Yep it was Lab and it turned in BPPV...at which point I "dumped" him---not because---that can not happen

---in fact it is kind of usual for Lab to turn into BPPV since the Lab infection weakens the inner ear structure---allowing any ready to roll rocks---to roll on out

---I dumped him because he did not take the time on the initial visit to explain that it was a distinct possibility that---that could happen...

..."can the tests trigger another attack?"...

Yes---if there are any rocks or fragments still in the canal---and they were the root cause for the vertigo---they can...but all the tests do is simulate mo vents u could possibly make & stimulate the inner ear canal...trying to replicate some of the movements u might make--and record the results...with a couple testing exceptions.....however if the rocks are out---it is not likely.

How are u??

:cool:

Hi Subs!

You're the greatest! You and Terri are the BEST!
None of the doctors that I've been to, were half as great as you guys have been to me...
I've only been married for a year and a half... and I thought my dreams were shattered... until I met you guys!
Thankyou so much, for everything!
Would it be ok, if I still wrote to you, from time to time?
I've only had one attack in March and one in May, and had the epley in May because I knew something wasn't right. Since then it was really hard... I"m much better and my days are good and bad... but I still feel the wooziness and sometimes off... will all this get better?
I still don't roll over and I never sleep on my bad side... feels awful... but I do try to lay on it for 5-15 min every other day... but I'm scared...
I hear crackling in both ears, when I swallow and a faint ringing in my bad ear...
How would I know if all the crystals are all out of my canals?
Is there anything to do to prevent from another attack?
Do you always feel 100% or do you sometimes feel the wooziness?
I'm glad that you're doing great!
I hope someday, I will too... thanks for everything!

maryanne-k

Hi Subs!

You're the greatest! You and Terri are the BEST!
None of the doctors that I've been to, were half as great as you guys have been to me...
I've only been married for a year and a half... and I thought my dreams were shattered... until I met you guys!
Thankyou so much, for everything!
Would it be ok, if I still wrote to you, from time to time?
I've only had one attack in March and one in May, and had the epley in May because I knew something wasn't right. Since then it was really hard... I"m much better and my days are good and bad... but I still feel the wooziness and sometimes off... will all this get better?
I still don't roll over and I never sleep on my bad side... feels awful... but I do try to lay on it for 5-15 min every other day... but I'm scared...
I hear crackling in both ears, when I swallow and a faint ringing in my bad ear...
How would I know if all the crystals are all out of my canals?
Is there anything to do to prevent from another attack?
Do you always feel 100% or do you sometimes feel the wooziness?
I'm glad that you're doing great!
I hope someday, I will too... thanks for everything!

maryanne-k

Hi Maryanne

Yes continue to post while u get better---it will help over any bumps...

..."feel the wooziness and sometimes off... will all this get better?"...

Yep---most of us---during the compensation period---talk about two steps forward and one back...then three forward...one back...with occasional "blips" along the way...if u keep moving---walking---VRT's---etc...with each passing month....progress will be made...until..it will be gone...it took me about 12/13/14 months to get rid of it...

..."I do try to lay on it for 5-15 min every other day... but I'm scared..."..

Took me 24/25 months...after achieving 100% compensation---for that to happen...not sure I achieved any real benefit from doing it...except...gave me one more side to sleep on---other then that...not much....

..."hear crackling in both ears, when I swallow and a faint ringing in my bad ear..."....

Just about all of us---have these weird noises/symptoms---which is not unusual---since the vestibular system---is "hard wired" into so many of the brain's tasks....the ringing...is prob tinnitus---also not unusal...with BPPV...hopfully it will go---along with the dizziness...for most it does...

...."How would I know if all the crystals are all out of my canals?"...

No more vertigo---read the MEP instructions/research paper---and u will see---that---that(no vertigo) is one of the things u look for---when doing the MEP's---as the point to stop,i.e., after three sets of MEP's in a 24 hour period..with no vertigo...stop....I think it says....but u can check...

...."Is there anything to do to prevent from another attack?"....

No one knows for sure---if u mean after u fully compensate for the current BPPV event

---for people over a certain age(50 I think) it tends to come back---but not as severe...think it says...of course that assumes---I think---BPPV caused by something other then a "head truma"....

..."Do you always feel 100% or do you sometimes feel the wooziness?"...

Now---always 100%---no wooziness---for me after I compensated(12/13/14 months)---never had any of that....occasionally---Now I will do an MEP or two---to see---if I can detect---anything---but for the past 24/25/26 months---nothing...

..."hope someday, I will too"....

U will---most do! Just takes time---more then we would like to contribute---but then---I don't remember being asked or given a choice...wish I had---most of us do....

P.s. one of Ilia's recent posts (willsmommy I think)---had a great---post on the probabilities that she would make it back to the land of the living....think it was in the last few weeks...she was right on...in the way she went about---deciding that---the probibilities..where in her favor....good read...for those wondering.....

:cool:

Hi Maryanne

Yes continue to post while u get better---it will help over any bumps...

..."feel the wooziness and sometimes off... will all this get better?"...

Yep---most of us---during the compensation period---talk about two steps forward and one back...then three forward...one back...with occasional "blips" along the way...if u keep moving---walking---VRT's---etc...with each passing month....progress will be made...until..it will be gone...it took me about 12/13/14 months to get rid of it...

..."I do try to lay on it for 5-15 min every other day... but I'm scared..."..

Took me 24/25 months...after achieving 100% compensation---for that to happen...not sure I achieved any real benefit from doing it...except...gave me one more side to sleep on---other then that...not much....

..."hear crackling in both ears, when I swallow and a faint ringing in my bad ear..."....

Just about all of us---have these weird noises/symptoms---which is not unusual---since the vestibular system---is "hard wired" into so many of the brain's tasks....the ringing...is prob tinnitus---also not unusal...with BPPV...hopfully it will go---along with the dizziness...for most it does...

...."How would I know if all the crystals are all out of my canals?"...

No more vertigo---read the MEP instructions/research paper---and u will see---that---that(no vertigo) is one of the things u look for---when doing the MEP's---as the point to stop,i.e., after three sets of MEP's in a 24 hour period..with no vertigo...stop....I think it says....but u can check...

...."Is there anything to do to prevent from another attack?"....

No one knows for sure---if u mean after u fully compensate for the current BPPV event

---for people over a certain age(50 I think) it tends to come back---but not as severe...think it says...of course that assumes---I think---BPPV caused by something other then a "head truma"....

..."Do you always feel 100% or do you sometimes feel the wooziness?"...

Now---always 100%---no wooziness---for me after I compensated(12/13/14 months)---never had any of that....occasionally---Now I will do an MEP or two---to see---if I can detect---anything---but for the past 24/25/26 months---nothing...

..."hope someday, I will too"....

U will---most do! Just takes time---more then we would like to contribute---but then---I don't remember being asked or given a choice...wish I had---most of us do....

P.s. one of Ilia's recent posts (willsmommy I think)---had a great---post on the probabilities that she would make it back to the land of the living....think it was in the last few weeks...she was right on...in the way she went about---deciding that---the probibilities..where in her favor....good read...for those wondering.....

:cool:

Hi Subs!

Thanks for all your help!
I feel better, just being able to find a friend to talk too...
I felt so frightened and alone...
knowing that you and Terri are doing great, I try to keep my hopes up...

After I was diagnosed with bppv I started to panic, so I would lay on two high pillows, only on my right side, the good side, for about 2 months, and I must have pulled something in my neck.
I have really bad pains and now there's a horrible clicking sound in my right shoulder. I had an xray and I have muscle spasm, so now I have to get an MRI on Thursday, just to check. But it's getting better...

On October 18, 2005 I've made another appointment, who specializes in BPPV, and he wants me to get all the tests done over again... because the other ENT specialist I went to doesn't know what he's talking about. It's strange... but the first ENT I went, he has BPPV for 25 years and there's nothing to do about it, he says he gets about 2 attacks per year. I really don't like him.

But I was told by another ENT specialist that most people only get about 1 or 2 attacks in a decade after the epley is performed, and some people only get 1 or 2 times and never again in their lifetime... do you think this is true?

I still feel woozy but it's on and off... I hope someday I can be 100% too...

Since I don't get anymore vertigo, I guess it just takes for my brain to compensate...
but there were 2 incidents when I was really stressed and I felt like it was about to spin... but when I layed on the bad side, it felt uncomfortable but nothing spun... did the crystals get loose again?

I only sleep flat on my back... can that give me a higher chance for the crystals to get loose and give me another attack?
What's the best position to sleep in?

I walk and run alot and I bend and pick up things alot too... will this make me have another attack? What shouldn't we do?

Thankyou so much for everything... I feel so much better!
It's so good to hear that you're doing great!
Take care and talk to you soon...

Hi Maryanne

..."something in my neck"....

Yep---a lot of people on this board---have experienced neck problems---of one sort or the other...one of the bodies systems that the vestibular system controls and gets feed back from---is the system that controls our movements---with the inner ear signals off track---we tend to overshoot and misjudge the muscle force used...tends to strain...muscules...especially in the neck.....see the P.s. comments on the bodies system that controls our movements---with the help of the vestibular and vision systems--its called:

"Proprioception"

..."first ENT I went, he has BPPV for 25 years and there's nothing to do about it"...

Well that's kind of over the top...a simple reading of the BPPV section of the Northwestern Univ web site...dispells that...maybe he meant no medicine(pills) will/would help....

..."do you think this is true?"....

Yep that is what the research data shows....think it is accurate...for most people....

..."Since I don't get anymore vertigo, I guess it just takes for my brain to compensate"...

Excellent----exactly---when this junk hits---it disrupts/destroys---neural networks in the brain---that it(brain) has established to control ur balance---automatically, i.e., with no active thought--just like breathing...its in auto...before this---so was ur balance....so those networks need to be reestablished...they way that happens---is the same way they were originally established...by you moving around to various positions and VRT---sort of hurries that along for those positions that u do not/would not normally take in the course of ur day....when 99.99% of the neural network(s) are reestablished---ur at 100%---that does not mean---there will not be an occasional "blip"---but all they mean---is u just made a movement---that u had not made during---ur compensation period....make that movement often enough and the brain will calculate an equation for it also---and add it to the repertoire of movement calculations--it has on file....

..."did the crystals get loose again?"...

From ur discription...of the event...not likely...there really is no in between with "vertigo"---its like love---u are or ur not...sounds more like the brain learning how to compensate for the position...but...remember...that takes one heck of a lot of cognitive processing power---for the brain to accomplish...so when ur tired...off...whatever...it really taxes the brain's processing capability..especially...since...ur actually doing other things at the same time...so ur asking it(brain) to "multi-task" on something it did automatically prior to this junk...it does not do multi-tasking well to begin with---which is one of the reasons it develops and files away all these equations in long term memory---to do things automatically---like breathing...that allows it to focus on the "now" events and solve them....as things get back to auto---through movement...that will disapear...aka---compensation.

..."I only sleep flat on my back... can that give me a higher chance for the crystals to get loose and give me another attack?
What's the best position to sleep in?".....

Its possible---but not likely at this late date---especially if there is no vertigo...and---the best position...is the one..u feel the most comfortable in...meaning while lying down and getting up---after lying down...ur body will tell u...

..."I walk and run alot and I bend and pick up things alot too... will this make me have another attack? What shouldn't we do?"....

Excellent on the walking/running/bending...etc...that is what the brain needs to reestablish the balance calculations...what u should not do---is not move---just sit around---in those cases---the brain does not get the input it needs---to develop the information needed for ur balance...

:cool:

P.s. Short blerb on:

"Proprioception"


(somatic senses are nervous system functions that collect sensory information from the body but are not one of the special senses of sight, hearing, taste, touch, or smell)


Typically, three somatic senses are described; pain, thermoreceptivity, and mechanoreceptivity.


The latter of which includes "tactile" and "position" sense.


Most Doc's(who know what their talking about) agree that there are THREE inputs to the "Brain's" balance center----and under normal circumstances they provide that information as follows:


--Vision 40%


--Vestibular 30%


--Proprioception 30%


The discussions center on what happens when the vestibular signal goes "Nutso" because of an inner ear problem, BPPV, Lab, VN, etc.....


While most people have a fairly good grasp on the first two(vision & vestibular) that last one(Proprioception)---is kind of elusive.


As you can see from the short(:-} description below---and if you think about it----when the vestibular system gets "hosed up" ---among other things---it screws up---the brain's ability to keep aware of equilibrium and any changes to it---and that throws a "heavy load" on the Proprioception System---actually throws it off-stride---which in turn----causes a lot of the problems(we post about) with the bodies "posture and movement and control" of the coordinated action of more than 650 muscles


---This is also the system that develops the "Stored Movement Templates" I talked about in another post---it is immanently involved in developing them---through repetitive movements(i.e, practice makes perfect).


Since the slightest movement or even the intention to move initiates widespread activity in muscles throughout the body(through the Proprioception System) and since every movement has to be correct for force, speed and position---any problems can cause a lot of problems through out the body, neck, eye, stiff/strained muscles---so it is worth(I think) knowing how this "Proprioception System" which provides 30% works/influences our problem(s).

From the Northwestern Univ web site---posted in the "sticky" information archive post at the top of the board:


....."BASIC PRINCIPLES

Proprioception is now generally classified as one of the somatic senses — nervous system functions that collect sensory information from the body but are not one of the special senses of sight, hearing, taste, touch, or smell. Typically, three somatic senses are described: pain, thermoreceptivity, and mechanoreceptivity, the latter of which includes tactile and position sense.

Proprioception relates primarily to the position sense and encompasses two aspects of it: static and dynamic. Static sense provides the brain with feedback about the orientation of one body part to another. It is this static sense that allows us, for instance, to reach behind our backs and clasp our hands together or to touch our index finger to our nose while keeping our eyes closed. The dynamic sense gives the brain feedback about the rate and direction of the body’s movement. We see this sense in action when we slip but the brain automatically rights us without our falling.

Thus, proprioception is actually a system of neuromuscular processes. The proprioceptive system involves (1) incoming (afferent) signals, (2) outgoing (efferent) signals, and (3) interactions between many parts of the brain. Proprioceptive receptors in the skeletal muscles (spindle cells) and on the surfaces of tendons (Golgi tendon apparatus) provide constant feedback on the positions of body segments and on the actions of muscles. Awareness of limb position and movement is also gained through the stimulation of receptors in the joints.

The brain keeps aware of equilibrium changes through the inner ear mechanisms (vestibular system), which enable the perception of gravity. The information furnished by the vestibular system is also essential for coordinating the position of the head and the movement of the eyes. There are two sets of end organs in the inner ear, or labyrinth: the semicircular canals, which respond to rotational movements (angular acceleration); and the utricle and saccule within the vestibule, which respond to changes in the position of the head with respect to gravity (linear acceleration). Functionally these organs are closely related to the cerebellum and to the reflex centers of the spinal cord and brain stem that govern the movements of the eyes, neck, and limbs.

Posture and movement are made possible by the coordinated action of more than 650 muscles. The slightest movement or even the intention to move initiates widespread activity in muscles throughout the body, and every movement has to be correct for force, speed, and position. These aspects of movement are governed by the proprioceptive system.".......

:cool:

Hi Terri,

I'm so glad you are back on the boards. Your post was so inspirational and really hit home with the kids issue. I was suppose to have been trying for a 2nd when I got ill and well I'm 34 now and still so sick, but have doubts that I'll ever get that opportunity again (heck, I just want to be well to enjoy the one I have) with my clock ticking. I'd be afraid if I was fortunate enough to have this go, to screw something up with my body to trigger it again. Anyway, your words were so comforting in your posts.

Geez, maybe Subs could be my doctor and I could come to Terri for mental therapy. I'd be fixed in no time. ;)

Thanks,
Gloria :wave:[/QUOTE]

Hi Gloria,

Glad I could be of help. As I've said before, I'm just paying it forward from all the great people who helped me here when I was in the thick of it myself.

Terri

How did you know that you had BPPV?
>>> Came home from the yoga class where I'd had the attack and immediately got out a medical book I have and it seemed pretty clear cut from what I was experiencing.

What sort of tests did you have done?
>>>At first none because I went to my GP (who's no longer my GP if that tells you anything about the quality of care I felt I got with her) and she basically confirmed what I was thinking and told me there was nothing I could do but just let the episode subside on it's own.

Do the crystals really dissolve?
>>>I'm not sure about that one. I believe so in some cases, particularly for people who get the Epley because it's meant to move the crystals out of the canal into another area where they can just dissolve. If they stay in there, I'm not sure. Subs would probably know more on that one.

Can you still exercise or will that move the crystals?
>>>A big OH YEA on the exercise front. I don't know about it moving the crystals per se, I don't think it affects them too much, but for the rest of your brain and the compensation factor, exercising and keeping moving is of vital importance. Many forms of exercise, such as biking, are considered good VRT.

Did you ever get ear pain, or ear crackling, or a faint ring in your ear?
>>>No ear pain or crackling, but sometimes maybe slight tinnitus, though that's gone now.

What position is the best to sleep, for people who have BPPV?
>>>Like I said before, my doc didn't make those distinctions about which way is best to sleep. Some are starting to question the whole idea of sitting up for 48 hours after the Epley, etc. So I just sleep however I want, and I don't have any problems.

Is sleeping on your back, bad?
>>>Not that I know of.

You mentioned that your doctor told you to act normally and you do...
does that mean you roll over in bed and sleep on the affected ear?
>>>See above. Yep.

I try but I still feel this wooziness... it's better now but I feel like it might start again, when I try to lay on my affected ear.
>>>If you feel like you're going to have an attack, have you tried the Modified Epley (MEP) that is described in the sticky archive?

Sorry for all these questions... my head is full of them...
>>>I remember that feeling too. Ask away!

Thankyou so very much for everything!
Would it be ok... if I kept writting to you guys?
>>>You bet.
I'm so happy that you're doing great!
Hope someday I can too...
>>>You will :)

Terri

[QUOTE=maryanne-kHow would I know if all the crystals are all out of my canals?
Is there anything to do to prevent from another attack?

maryanne-k[/QUOTE]

Hi Maryanne

Hope things are going well for you. I just wanted to add a couple of comments, as a fellow BPPV sufferer. I had my first BPPV attack just over 4 years ago, I turned over onto my right side in bed and the world just turned over and over and over ..... I had no idea what was happening, and the doctors I went to were useless, they just told me "it will go away on it's own". It wasn't until I did some research on the Internet (and found this board) that I realised I had BPPV, by this time I had spent almost 2 months suffering from constant violent spinning attacks as well as 24/7 off-balance/wooziness/dizziness/visual problems. I had the Epley done twice, which helped the BPPV attacks, but not the 24/7 symptoms. I am convinced that some permanent (or at the very least long-term) damage was done to my vestibular system after the constant "provocation" over those two months. I also suffered from recurrent BPPV attacks, sometimes I would go 8-9 months without one, or have several within a few months. I would do the Brandt-Daroff exercises each time and the attacks would cease (although again, not the ongoing symptoms).

Anyway, I eventually found out about the importance of VRT and tried to do it myself for a while as there was no one here in Perth who specialised in vestibular problems after the physio who did the Epley on me was transferred back to Sydney. I finally found out (though another member of this board) about another physio who had set up a practice specialising in VRT and went to see him earlier this year, which was a huge help for me. As well as designing a VRT program for me, he actually managed to give me an explanation as to why I had reoccuring attacks of BPPV.

I had always thought it was the same crystals "getting loose" again and causing the problems. It actually turns out that the nerves feeding the balance organs (otoliths) in my inner ear are not "working" properly and therefore undernourishing the those organs in my right ear. What happens then is that the organs "wither" a little and crystals keep breaking off - so it's not the same crystals causing the recurrent BPPV attacks, it's actually new ones that are causing the problem! It made so much sense to me, I couldn't believe that someone couldn't have told me this before!

The VRT exercises he gave me were designed to stimulate those nerves and the otoliths so as to encourage them to work better and hopefully decrease (or even stop) the crystals coming away. I did pretty intense VRT for several months and then when I went back to him, he told me to concentrate mainly on the visual exercises, as the visual disturbances are a main part of the problem for me. I keep on with those (although not as much as I was, as I am unable to do them at work as I cannot get the time away from my desk!) and have found in recent times I was able to go to the movies with little problem (although I made sure I saw a movie that was fairly "easy" to watch without a lot of fast movement/flashing lights/lasers etc!) and I have also found that now when I ride my bike I don't get that "trampoline walk" and increased visual problems when I finish my ride. So I am HOPING that after 4 long years I may finally be improving.
Is there any way to prevent another attack? No one really knows - I still continue to do the Brandt-Daroff exercises a couple of times a week (or the Epley could be used) just in case there might be any stray crystals floating about, to try and keep them out of the "danger area". Whether this actually helps or not, I don't know, but it makes me feel more in control and if they are helping and actually do prevent an attack, then it's a small price to pay to continue doing them even for the rest of my life if necessary.

The VRT guy's opinion was the more exercise the better, as this also stimulates the nerves to the balance organs and should help to improve the way they operate. I went to a personal trainer for 6 months last year, and did all sorts of things - working out in the gym, up and down from situps to bikes to stair running, back down to floor execises again, jumping, weights etc, really full-on workouts and did not have any BPPV attacks during that time. I stopped going to the gym, had a severe BPPV attack about 6 weeks later, then had a very bad bout of tonsillitis and two more violent and prolonged BPPV attacks over the next two months. So I wonder whether the exercising was acting as a preventative measure in a way?


My right ear is the one affected and I do not lie on my right side at all and haven't since all this started. If I try to, I feel dreadful, really uncomfortable, and have to change positions. This is possibly now because I haven't lain on that side for over 4 years and my body is no longer used to me lying in that position. I guess I should try and retrain my brain but I am so afraid of triggering more BPPV attacks by lying on that side again that I would rather not do it. I guess I'll just have to be brave and build up to it!

Good luck and I hope your head monster goes away for good!

Julie

Hi Julie
Very interesting explanation on the recurring BPPV attacks. The explanation makes sense to me. I have been very fortunate in that I have not had any recurrences once I managed to discover the MEP, I believe my BPPV was caused by damage from the labyrinthitis attack two years previous.
When your VRT guy told you about the cause being an "undernourished" inner ear, did he make any suggestions as to diet etc to increase potatssium etc? Just wondering if there is any lack of mineral (since the rocks are calcium based) that would help to strengthen the bond and minimize the breaking off part?
I agree 100% with the exercise thing. The motto of any inner ear sufferer should be "keep moving".
Thanks for a clear explanation and hope you can find an end to the spins permanently!
FC

Hi Maryanne

..."something in my neck"....

Yep---a lot of people on this board---have experienced neck problems---of one sort or the other...one of the bodies systems that the vestibular system controls and gets feed back from---is the system that controls our movements---with the inner ear signals off track---we tend to overshoot and misjudge the muscle force used...tends to strain...muscules...especially in the neck.....see the P.s. comments on the bodies system that controls our movements---with the help of the vestibular and vision systems--its called:

"Proprioception"

..."first ENT I went, he has BPPV for 25 years and there's nothing to do about it"...

Well that's kind of over the top...a simple reading of the BPPV section of the Northwestern Univ web site...dispells that...maybe he meant no medicine(pills) will/would help....

..."do you think this is true?"....

Yep that is what the research data shows....think it is accurate...for most people....

..."Since I don't get anymore vertigo, I guess it just takes for my brain to compensate"...

Excellent----exactly---when this junk hits---it disrupts/destroys---neural networks in the brain---that it(brain) has established to control ur balance---automatically, i.e., with no active thought--just like breathing...its in auto...before this---so was ur balance....so those networks need to be reestablished...they way that happens---is the same way they were originally established...by you moving around to various positions and VRT---sort of hurries that along for those positions that u do not/would not normally take in the course of ur day....when 99.99% of the neural network(s) are reestablished---ur at 100%---that does not mean---there will not be an occasional "blip"---but all they mean---is u just made a movement---that u had not made during---ur compensation period....make that movement often enough and the brain will calculate an equation for it also---and add it to the repertoire of movement calculations--it has on file....

..."did the crystals get loose again?"...

From ur discription...of the event...not likely...there really is no in between with "vertigo"---its like love---u are or ur not...sounds more like the brain learning how to compensate for the position...but...remember...that takes one heck of a lot of cognitive processing power---for the brain to accomplish...so when ur tired...off...whatever...it really taxes the brain's processing capability..especially...since...ur actually doing other things at the same time...so ur asking it(brain) to "multi-task" on something it did automatically prior to this junk...it does not do multi-tasking well to begin with---which is one of the reasons it develops and files away all these equations in long term memory---to do things automatically---like breathing...that allows it to focus on the "now" events and solve them....as things get back to auto---through movement...that will disapear...aka---compensation.

..."I only sleep flat on my back... can that give me a higher chance for the crystals to get loose and give me another attack?
What's the best position to sleep in?".....

Its possible---but not likely at this late date---especially if there is no vertigo...and---the best position...is the one..u feel the most comfortable in...meaning while lying down and getting up---after lying down...ur body will tell u...

..."I walk and run alot and I bend and pick up things alot too... will this make me have another attack? What shouldn't we do?"....

Excellent on the walking/running/bending...etc...that is what the brain needs to reestablish the balance calculations...what u should not do---is not move---just sit around---in those cases---the brain does not get the input it needs---to develop the information needed for ur balance...

:cool:

P.s. Short blerb on:

"Proprioception"


(somatic senses are nervous system functions that collect sensory information from the body but are not one of the special senses of sight, hearing, taste, touch, or smell)


Typically, three somatic senses are described; pain, thermoreceptivity, and mechanoreceptivity.


The latter of which includes "tactile" and "position" sense.


Most Doc's(who know what their talking about) agree that there are THREE inputs to the "Brain's" balance center----and under normal circumstances they provide that information as follows:


--Vision 40%


--Vestibular 30%


--Proprioception 30%


The discussions center on what happens when the vestibular signal goes "Nutso" because of an inner ear problem, BPPV, Lab, VN, etc.....


While most people have a fairly good grasp on the first two(vision & vestibular) that last one(Proprioception)---is kind of elusive.


As you can see from the short(:-} description below---and if you think about it----when the vestibular system gets "hosed up" ---among other things---it screws up---the brain's ability to keep aware of equilibrium and any changes to it---and that throws a "heavy load" on the Proprioception System---actually throws it off-stride---which in turn----causes a lot of the problems(we post about) with the bodies "posture and movement and control" of the coordinated action of more than 650 muscles


---This is also the system that develops the "Stored Movement Templates" I talked about in another post---it is immanently involved in developing them---through repetitive movements(i.e, practice makes perfect).


Since the slightest movement or even the intention to move initiates widespread activity in muscles throughout the body(through the Proprioception System) and since every movement has to be correct for force, speed and position---any problems can cause a lot of problems through out the body, neck, eye, stiff/strained muscles---so it is worth(I think) knowing how this "Proprioception System" which provides 30% works/influences our problem(s).

From the Northwestern Univ web site---posted in the "sticky" information archive post at the top of the board:


....."BASIC PRINCIPLES

Proprioception is now generally classified as one of the somatic senses — nervous system functions that collect sensory information from the body but are not one of the special senses of sight, hearing, taste, touch, or smell. Typically, three somatic senses are described: pain, thermoreceptivity, and mechanoreceptivity, the latter of which includes tactile and position sense.

Proprioception relates primarily to the position sense and encompasses two aspects of it: static and dynamic. Static sense provides the brain with feedback about the orientation of one body part to another. It is this static sense that allows us, for instance, to reach behind our backs and clasp our hands together or to touch our index finger to our nose while keeping our eyes closed. The dynamic sense gives the brain feedback about the rate and direction of the body’s movement. We see this sense in action when we slip but the brain automatically rights us without our falling.

Thus, proprioception is actually a system of neuromuscular processes. The proprioceptive system involves (1) incoming (afferent) signals, (2) outgoing (efferent) signals, and (3) interactions between many parts of the brain. Proprioceptive receptors in the skeletal muscles (spindle cells) and on the surfaces of tendons (Golgi tendon apparatus) provide constant feedback on the positions of body segments and on the actions of muscles. Awareness of limb position and movement is also gained through the stimulation of receptors in the joints.

The brain keeps aware of equilibrium changes through the inner ear mechanisms (vestibular system), which enable the perception of gravity. The information furnished by the vestibular system is also essential for coordinating the position of the head and the movement of the eyes. There are two sets of end organs in the inner ear, or labyrinth: the semicircular canals, which respond to rotational movements (angular acceleration); and the utricle and saccule within the vestibule, which respond to changes in the position of the head with respect to gravity (linear acceleration). Functionally these organs are closely related to the cerebellum and to the reflex centers of the spinal cord and brain stem that govern the movements of the eyes, neck, and limbs.

Posture and movement are made possible by the coordinated action of more than 650 muscles. The slightest movement or even the intention to move initiates widespread activity in muscles throughout the body, and every movement has to be correct for force, speed, and position. These aspects of movement are governed by the proprioceptive system.".......

:cool:

Hi Subs!

THANKYOU SO MUCH!
You really should be a doctor!
Everything you've explained to me, makes me understand more and to be more calm and positive!
Thankyou!
Sleeping on my back is the only position, I can sleep... because my bad ear is the left and my right shoulder is so much pain from my neck...
I'm a little scared that sleeping on my back will cause for another attack but that's the only position... what can I do?
I really don't want another attack...

Oh! Do you think that if I take all the tests over again, that my crystals will be loose and cause an attack?
Should I not re-take the tests?

I can't thankyou enough!
The weather is so wet and cold... stay dry and warm
Talk to you soon,

maryanne-k

Hi Maryanne

Hope things are going well for you. I just wanted to add a couple of comments, as a fellow BPPV sufferer. I had my first BPPV attack just over 4 years ago, I turned over onto my right side in bed and the world just turned over and over and over ..... I had no idea what was happening, and the doctors I went to were useless, they just told me "it will go away on it's own". It wasn't until I did some research on the Internet (and found this board) that I realised I had BPPV, by this time I had spent almost 2 months suffering from constant violent spinning attacks as well as 24/7 off-balance/wooziness/dizziness/visual problems. I had the Epley done twice, which helped the BPPV attacks, but not the 24/7 symptoms. I am convinced that some permanent (or at the very least long-term) damage was done to my vestibular system after the constant "provocation" over those two months. I also suffered from recurrent BPPV attacks, sometimes I would go 8-9 months without one, or have several within a few months. I would do the Brandt-Daroff exercises each time and the attacks would cease (although again, not the ongoing symptoms).

Anyway, I eventually found out about the importance of VRT and tried to do it myself for a while as there was no one here in Perth who specialised in vestibular problems after the physio who did the Epley on me was transferred back to Sydney. I finally found out (though another member of this board) about another physio who had set up a practice specialising in VRT and went to see him earlier this year, which was a huge help for me. As well as designing a VRT program for me, he actually managed to give me an explanation as to why I had reoccuring attacks of BPPV.

I had always thought it was the same crystals "getting loose" again and causing the problems. It actually turns out that the nerves feeding the balance organs (otoliths) in my inner ear are not "working" properly and therefore undernourishing the those organs in my right ear. What happens then is that the organs "wither" a little and crystals keep breaking off - so it's not the same crystals causing the recurrent BPPV attacks, it's actually new ones that are causing the problem! It made so much sense to me, I couldn't believe that someone couldn't have told me this before!

The VRT exercises he gave me were designed to stimulate those nerves and the otoliths so as to encourage them to work better and hopefully decrease (or even stop) the crystals coming away. I did pretty intense VRT for several months and then when I went back to him, he told me to concentrate mainly on the visual exercises, as the visual disturbances are a main part of the problem for me. I keep on with those (although not as much as I was, as I am unable to do them at work as I cannot get the time away from my desk!) and have found in recent times I was able to go to the movies with little problem (although I made sure I saw a movie that was fairly "easy" to watch without a lot of fast movement/flashing lights/lasers etc!) and I have also found that now when I ride my bike I don't get that "trampoline walk" and increased visual problems when I finish my ride. So I am HOPING that after 4 long years I may finally be improving.
Is there any way to prevent another attack? No one really knows - I still continue to do the Brandt-Daroff exercises a couple of times a week (or the Epley could be used) just in case there might be any stray crystals floating about, to try and keep them out of the "danger area". Whether this actually helps or not, I don't know, but it makes me feel more in control and if they are helping and actually do prevent an attack, then it's a small price to pay to continue doing them even for the rest of my life if necessary.

The VRT guy's opinion was the more exercise the better, as this also stimulates the nerves to the balance organs and should help to improve the way they operate. I went to a personal trainer for 6 months last year, and did all sorts of things - working out in the gym, up and down from situps to bikes to stair running, back down to floor execises again, jumping, weights etc, really full-on workouts and did not have any BPPV attacks during that time. I stopped going to the gym, had a severe BPPV attack about 6 weeks later, then had a very bad bout of tonsillitis and two more violent and prolonged BPPV attacks over the next two months. So I wonder whether the exercising was acting as a preventative measure in a way?


My right ear is the one affected and I do not lie on my right side at all and haven't since all this started. If I try to, I feel dreadful, really uncomfortable, and have to change positions. This is possibly now because I haven't lain on that side for over 4 years and my body is no longer used to me lying in that position. I guess I should try and retrain my brain but I am so afraid of triggering more BPPV attacks by lying on that side again that I would rather not do it. I guess I'll just have to be brave and build up to it!

Good luck and I hope your head monster goes away for good!

Julie

Hi Julie,

Thanks for all the great information... Do the vertigo attacks get worse as the years pass?

How did the doctor know that the otoliths weren't working properly?

Did you take an MRI or a special test?

I hope that you're doing better... hang in there.

Thanks again!

maryanne-k

How did you know that you had BPPV?
>>> Came home from the yoga class where I'd had the attack and immediately got out a medical book I have and it seemed pretty clear cut from what I was experiencing.

What sort of tests did you have done?
>>>At first none because I went to my GP (who's no longer my GP if that tells you anything about the quality of care I felt I got with her) and she basically confirmed what I was thinking and told me there was nothing I could do but just let the episode subside on it's own.

Do the crystals really dissolve?
>>>I'm not sure about that one. I believe so in some cases, particularly for people who get the Epley because it's meant to move the crystals out of the canal into another area where they can just dissolve. If they stay in there, I'm not sure. Subs would probably know more on that one.

Can you still exercise or will that move the crystals?
>>>A big OH YEA on the exercise front. I don't know about it moving the crystals per se, I don't think it affects them too much, but for the rest of your brain and the compensation factor, exercising and keeping moving is of vital importance. Many forms of exercise, such as biking, are considered good VRT.

Did you ever get ear pain, or ear crackling, or a faint ring in your ear?
>>>No ear pain or crackling, but sometimes maybe slight tinnitus, though that's gone now.

What position is the best to sleep, for people who have BPPV?
>>>Like I said before, my doc didn't make those distinctions about which way is best to sleep. Some are starting to question the whole idea of sitting up for 48 hours after the Epley, etc. So I just sleep however I want, and I don't have any problems.

Is sleeping on your back, bad?
>>>Not that I know of.

You mentioned that your doctor told you to act normally and you do...
does that mean you roll over in bed and sleep on the affected ear?
>>>See above. Yep.

I try but I still feel this wooziness... it's better now but I feel like it might start again, when I try to lay on my affected ear.
>>>If you feel like you're going to have an attack, have you tried the Modified Epley (MEP) that is described in the sticky archive?

Sorry for all these questions... my head is full of them...
>>>I remember that feeling too. Ask away!

Thankyou so very much for everything!
Would it be ok... if I kept writting to you guys?
>>>You bet.
I'm so happy that you're doing great!
Hope someday I can too...
>>>You will :)

Terri

Hi Terri,

Thanks for answering each questions.
I tend to repeat myself alot... sorry...
Still keeping my hopes up and very active...
I'm getting better... just hope it never comes back again...
I'm glad that you're doing so well^.^
Someday I hope that I will too...
Thankyou so much for everything!
Talk to you soon...
maryanne-k

Hi Maryanne

..."something in my neck"....

Yep---a lot of people on this board---have experienced neck problems---of one sort or the other...one of the bodies systems that the vestibular system controls and gets feed back from---is the system that controls our movements---with the inner ear signals off track---we tend to overshoot and misjudge the muscle force used...tends to strain...muscules...especially in the neck.....see the P.s. comments on the bodies system that controls our movements---with the help of the vestibular and vision systems--its called:

"Proprioception"

..."first ENT I went, he has BPPV for 25 years and there's nothing to do about it"...

Well that's kind of over the top...a simple reading of the BPPV section of the Northwestern Univ web site...dispells that...maybe he meant no medicine(pills) will/would help....

..."do you think this is true?"....

Yep that is what the research data shows....think it is accurate...for most people....

..."Since I don't get anymore vertigo, I guess it just takes for my brain to compensate"...

Excellent----exactly---when this junk hits---it disrupts/destroys---neural networks in the brain---that it(brain) has established to control ur balance---automatically, i.e., with no active thought--just like breathing...its in auto...before this---so was ur balance....so those networks need to be reestablished...they way that happens---is the same way they were originally established...by you moving around to various positions and VRT---sort of hurries that along for those positions that u do not/would not normally take in the course of ur day....when 99.99% of the neural network(s) are reestablished---ur at 100%---that does not mean---there will not be an occasional "blip"---but all they mean---is u just made a movement---that u had not made during---ur compensation period....make that movement often enough and the brain will calculate an equation for it also---and add it to the repertoire of movement calculations--it has on file....

..."did the crystals get loose again?"...

From ur discription...of the event...not likely...there really is no in between with "vertigo"---its like love---u are or ur not...sounds more like the brain learning how to compensate for the position...but...remember...that takes one heck of a lot of cognitive processing power---for the brain to accomplish...so when ur tired...off...whatever...it really taxes the brain's processing capability..especially...since...ur actually doing other things at the same time...so ur asking it(brain) to "multi-task" on something it did automatically prior to this junk...it does not do multi-tasking well to begin with---which is one of the reasons it develops and files away all these equations in long term memory---to do things automatically---like breathing...that allows it to focus on the "now" events and solve them....as things get back to auto---through movement...that will disapear...aka---compensation.

..."I only sleep flat on my back... can that give me a higher chance for the crystals to get loose and give me another attack?
What's the best position to sleep in?".....

Its possible---but not likely at this late date---especially if there is no vertigo...and---the best position...is the one..u feel the most comfortable in...meaning while lying down and getting up---after lying down...ur body will tell u...

..."I walk and run alot and I bend and pick up things alot too... will this make me have another attack? What shouldn't we do?"....

Excellent on the walking/running/bending...etc...that is what the brain needs to reestablish the balance calculations...what u should not do---is not move---just sit around---in those cases---the brain does not get the input it needs---to develop the information needed for ur balance...

:cool:

P.s. Short blerb on:

"Proprioception"


(somatic senses are nervous system functions that collect sensory information from the body but are not one of the special senses of sight, hearing, taste, touch, or smell)


Typically, three somatic senses are described; pain, thermoreceptivity, and mechanoreceptivity.


The latter of which includes "tactile" and "position" sense.


Most Doc's(who know what their talking about) agree that there are THREE inputs to the "Brain's" balance center----and under normal circumstances they provide that information as follows:


--Vision 40%


--Vestibular 30%


--Proprioception 30%


The discussions center on what happens when the vestibular signal goes "Nutso" because of an inner ear problem, BPPV, Lab, VN, etc.....


While most people have a fairly good grasp on the first two(vision & vestibular) that last one(Proprioception)---is kind of elusive.


As you can see from the short(:-} description below---and if you think about it----when the vestibular system gets "hosed up" ---among other things---it screws up---the brain's ability to keep aware of equilibrium and any changes to it---and that throws a "heavy load" on the Proprioception System---actually throws it off-stride---which in turn----causes a lot of the problems(we post about) with the bodies "posture and movement and control" of the coordinated action of more than 650 muscles


---This is also the system that develops the "Stored Movement Templates" I talked about in another post---it is immanently involved in developing them---through repetitive movements(i.e, practice makes perfect).


Since the slightest movement or even the intention to move initiates widespread activity in muscles throughout the body(through the Proprioception System) and since every movement has to be correct for force, speed and position---any problems can cause a lot of problems through out the body, neck, eye, stiff/strained muscles---so it is worth(I think) knowing how this "Proprioception System" which provides 30% works/influences our problem(s).

From the Northwestern Univ web site---posted in the "sticky" information archive post at the top of the board:


....."BASIC PRINCIPLES

Proprioception is now generally classified as one of the somatic senses — nervous system functions that collect sensory information from the body but are not one of the special senses of sight, hearing, taste, touch, or smell. Typically, three somatic senses are described: pain, thermoreceptivity, and mechanoreceptivity, the latter of which includes tactile and position sense.

Proprioception relates primarily to the position sense and encompasses two aspects of it: static and dynamic. Static sense provides the brain with feedback about the orientation of one body part to another. It is this static sense that allows us, for instance, to reach behind our backs and clasp our hands together or to touch our index finger to our nose while keeping our eyes closed. The dynamic sense gives the brain feedback about the rate and direction of the body’s movement. We see this sense in action when we slip but the brain automatically rights us without our falling.

Thus, proprioception is actually a system of neuromuscular processes. The proprioceptive system involves (1) incoming (afferent) signals, (2) outgoing (efferent) signals, and (3) interactions between many parts of the brain. Proprioceptive receptors in the skeletal muscles (spindle cells) and on the surfaces of tendons (Golgi tendon apparatus) provide constant feedback on the positions of body segments and on the actions of muscles. Awareness of limb position and movement is also gained through the stimulation of receptors in the joints.

The brain keeps aware of equilibrium changes through the inner ear mechanisms (vestibular system), which enable the perception of gravity. The information furnished by the vestibular system is also essential for coordinating the position of the head and the movement of the eyes. There are two sets of end organs in the inner ear, or labyrinth: the semicircular canals, which respond to rotational movements (angular acceleration); and the utricle and saccule within the vestibule, which respond to changes in the position of the head with respect to gravity (linear acceleration). Functionally these organs are closely related to the cerebellum and to the reflex centers of the spinal cord and brain stem that govern the movements of the eyes, neck, and limbs.

Posture and movement are made possible by the coordinated action of more than 650 muscles. The slightest movement or even the intention to move initiates widespread activity in muscles throughout the body, and every movement has to be correct for force, speed, and position. These aspects of movement are governed by the proprioceptive system.".......

:cool:

Hi Subs,

It's me again...
Spikey wrote something that was interesting and confusing to me...
I was wondering if you knew anything about otoliths?

If the otoliths aren't working properly, then everytime a person gets a bppv attack, that means that new crystals keep falling?

I thought the crystals come loose but after the epley the crystals are moved to an area, where they stick or dissolve.

It's not the same crystals that cause the bppv?

New crystals fall?

Sorry for so many questions...

Spikey, a memeber of this board wrote to me... and she seems to get bppv alot in the past four years after the epley was performed...

So now I'm starting to panic... if my otoliths are damaged...

What is otoliths?

How can I find out?

Thanks Subs,

maryanne-k

Hi Julie,

Thanks for all the great information... Do the vertigo attacks get worse as the years pass?

How did the doctor know that the otoliths weren't working properly?

Did you take an MRI or a special test?

I hope that you're doing better... hang in there.

Thanks again!

maryanne-k

Hi Maryanne

Some of the vertigo attacks were worse than others, although the attacks during the first 6 months or so were the worst, very violent spinning. The one I had in March this year was very bad, made even worse by the fact that I couldn't get it to stop, even using the MEP (modified Epley, for use at home). I had to use another couple of exercises to get the world to stop spinning!

I had been for MRI, CT scan, and all sorts of other tests, none of which seemed to show up anything much and none of the doctors (even the ENT) I went to could give me any explanation for the recurring BPPV attacks and ongoing symptoms. It wasn't until I went to the VRT guy, who is a physio specialising in balance and vestibular problems, that this explanation came up. This has been fully explained in one of my previous posts (called "first visit to VRT guy" or something similar!) but to summarise, he did various balance tests and the awful ones where you wear the goggles and they tip you backwards and hold your head in various positions, and sit you up and shake your head back and forth and check for nystagmus (where your eyes move back and forth involuntarily during a vertigo attack, classic sign of BPPV) and made his finding based on those tests. (The otoliths are the balance organs of the inner ear, by the way, although Subs can probably give a better explanation!). He said that it is usually congenital, i.e. something you are born with, but the BPPV problems often do not occur until you are an adult. He was quite positive that the exercises would help and also positive of a return to anything up to 95% "normality" (for want of a better word), so even if you do have this condition, it seems that something can be done to help, so don't panic!

Julie

Hi....

otoliths are the calcium crystals contained in the otolith organs in the vestibular system.

One is the utricle, contains otoliths, and it senses forward and backward movement of the head.

The other is the saccule, contains otolighs, and it senses vertical movements of the head.

The both work in conjunction with the semi-circular canals.

One can even have BPPV as a baby.

Mine started at age 11 -- I'm 51 now.

I would suggest you do a lot of research on it. There's a book called "BPPV What you Need to Know" by P.J. Haybach. I got it through VEDA....Vestibular Disorders Association. Worth it for sure.

Hang in there, don't let your anxiety take over. The Epley is a treatment to move the otoliths out of the canal that's affected. It's not a permanent treatment.

Some can have attacks every few years, or every few months, or one huge one that can last years.

Do your research.

quincy

Hi Maryann

..."What is otoliths?"

....(I wish I never had to find out-a long with some others--I bet)

---otoliths is the name for the section of the inner ear that contain the organs that sense gravity and linear acceleration.

---There are two otolithic organs---the utricle and saccule

---The otoliths(containing two organs)---respond to your angular and linear movement

--- The utricle and saccule(the two otolithic organs) contribute to the sense of verticality.

---If there is an injury to the otoliths, or to the nerve that transmits impulses from the otoliths and other parts the ear to the brain, judgment of vertical may be altered.

---The inner ear may falsely suggest that the head is tilted while the eyes and somatosensory systems suggest that one is upright. This would cause a sensory conflict.

---You have BPPV(you said)---that normally involves your semi-circular canals(but not always) and more then likely your Posterior Semi-Circular Canal(you have three canals--Posterior, Horizontal & Anterior):

-Your three Semicircular Canals--register head velocity

-Your two Otoliths Organs--register linear accelerationi(& gravity)

---Together provide input to two central reflexes, VOR (Vestibulo-Ocular reflex) and VSR (Vestibulo-Spinal Reflex)

--In Benign Paroxysmal Positional Vertigo (BPPV) dizziness is generally thought to be due to debris which has collected within a canal.

--The debris can be thought of as "ear rocks", although the formal name is "otoconia".

--Ear rocks are small crystals of calcium carbonate derived from a structure in the ear called the "utricle"

--The utricle may have been damaged by head injury, infection, or other disorder of the inner ear, or may have degenerated because of advanced age allowing the rocks to get out into the canal(s)

Think the medical jury is still out---on---exactly how---what's going down---or is taking place...but for you---the existing evidence...shows that with the proper maneuvers(Epley, etc..) and VRT's plus what your already doing(running, walking, etc....)

---any BPPV injuries...should heal---and you can take up---where you left off---before this junk---that so few understand---came about

....the success rate for BPPV---properly Dx'd---and dealt with is 80/81 %

---that's pretty good odds

---and could be the best odds you will ever get

---as you travel this road

......Grab Them...and persevere on....u'll make---most do!!

:cool:

Hi Maryanne

Some of the vertigo attacks were worse than others, although the attacks during the first 6 months or so were the worst, very violent spinning. The one I had in March this year was very bad, made even worse by the fact that I couldn't get it to stop, even using the MEP (modified Epley, for use at home). I had to use another couple of exercises to get the world to stop spinning!

I had been for MRI, CT scan, and all sorts of other tests, none of which seemed to show up anything much and none of the doctors (even the ENT) I went to could give me any explanation for the recurring BPPV attacks and ongoing symptoms. It wasn't until I went to the VRT guy, who is a physio specialising in balance and vestibular problems, that this explanation came up. This has been fully explained in one of my previous posts (called "first visit to VRT guy" or something similar!) but to summarise, he did various balance tests and the awful ones where you wear the goggles and they tip you backwards and hold your head in various positions, and sit you up and shake your head back and forth and check for nystagmus (where your eyes move back and forth involuntarily during a vertigo attack, classic sign of BPPV) and made his finding based on those tests. (The otoliths are the balance organs of the inner ear, by the way, although Subs can probably give a better explanation!). He said that it is usually congenital, i.e. something you are born with, but the BPPV problems often do not occur until you are an adult. He was quite positive that the exercises would help and also positive of a return to anything up to 95% "normality" (for want of a better word), so even if you do have this condition, it seems that something can be done to help, so don't panic!

Julie

Hi Julie,

Thanks for all the great information...
It was very interesting.
I'm much better now... how about you?
I hope that you're doing well ^.^

thanks,
maryanne-k

Hi....

otoliths are the calcium crystals contained in the otolith organs in the vestibular system.

One is the utricle, contains otoliths, and it senses forward and backward movement of the head.

The other is the saccule, contains otolighs, and it senses vertical movements of the head.

The both work in conjunction with the semi-circular canals.

One can even have BPPV as a baby.

Mine started at age 11 -- I'm 51 now.

I would suggest you do a lot of research on it. There's a book called "BPPV What you Need to Know" by P.J. Haybach. I got it through VEDA....Vestibular Disorders Association. Worth it for sure.

Hang in there, don't let your anxiety take over. The Epley is a treatment to move the otoliths out of the canal that's affected. It's not a permanent treatment.

Some can have attacks every few years, or every few months, or one huge one that can last years.

Do your research.

quincy

Thanks for the explanation...
I've been reading different informations and been seeing many doctors... but I'm understanding everything much better...
Wow! You've came a long way...
Have you had many attacks?
Did the epley work for you?
I hope that you're doing good...

thanks,
maryanne-k

Hi Maryann

..."What is otoliths?"

....(I wish I never had to find out-a long with some others--I bet)

---otoliths is the name for the section of the inner ear that contain the organs that sense gravity and linear acceleration.

---There are two otolithic organs---the utricle and saccule

---The otoliths(containing two organs)---respond to your angular and linear movement

--- The utricle and saccule(the two otolithic organs) contribute to the sense of verticality.

---If there is an injury to the otoliths, or to the nerve that transmits impulses from the otoliths and other parts the ear to the brain, judgment of vertical may be altered.

---The inner ear may falsely suggest that the head is tilted while the eyes and somatosensory systems suggest that one is upright. This would cause a sensory conflict.

---You have BPPV(you said)---that normally involves your semi-circular canals(but not always) and more then likely your Posterior Semi-Circular Canal(you have three canals--Posterior, Horizontal & Anterior):

-Your three Semicircular Canals--register head velocity

-Your two Otoliths Organs--register linear accelerationi(& gravity)

---Together provide input to two central reflexes, VOR (Vestibulo-Ocular reflex) and VSR (Vestibulo-Spinal Reflex)

--In Benign Paroxysmal Positional Vertigo (BPPV) dizziness is generally thought to be due to debris which has collected within a canal.

--The debris can be thought of as "ear rocks", although the formal name is "otoconia".

--Ear rocks are small crystals of calcium carbonate derived from a structure in the ear called the "utricle"

--The utricle may have been damaged by head injury, infection, or other disorder of the inner ear, or may have degenerated because of advanced age allowing the rocks to get out into the canal(s)

Think the medical jury is still out---on---exactly how---what's going down---or is taking place...but for you---the existing evidence...shows that with the proper maneuvers(Epley, etc..) and VRT's plus what your already doing(running, walking, etc....)

---any BPPV injuries...should heal---and you can take up---where you left off---before this junk---that so few understand---came about

....the success rate for BPPV---properly Dx'd---and dealt with is 80/81 %

---that's pretty good odds

---and could be the best odds you will ever get

---as you travel this road

......Grab Them...and persevere on....u'll make---most do!!

:cool:

Hi Subs,

Thankyou so much!
Everything is very clear.
That's what the doctor told me too...
That it was the crystals that came loose and floats into the canals...
I don't think I was born with having a problem with my otoliths...
I'm so grateful for being better...
I know that every person is different... in how their bppv affects them...
I just hope that mine never comes back again...
How are you doing?
Does it feel good to finally be able to sleep on any side?
Well... I'm off to see a new specialist on Tuesday...
Hope everything goes well...
Thanks for everything,
maryanne-k

Hi Subs,

Thankyou so much!
Everything is very clear.
That's what the doctor told me too...
That it was the crystals that came loose and floats into the canals...
I don't think I was born with having a problem with my otoliths...
I'm so grateful for being better...
I know that every person is different... in how their bppv affects them...
I just hope that mine never comes back again...
How are you doing?
Does it feel good to finally be able to sleep on any side?
Well... I'm off to see a new specialist on Tuesday...
Hope everything goes well...
Thanks for everything,
maryanne-k

Hi Maryanne

Still at 100%--& chugging along--getting things ready for winter---yep--does feel good to sleep on that(right) side.....

Keep doing ur stuff(VRT's/Running, etc..)---& it will be long gone..

Let us know what the New Specialist---has to say...

Hi Maryanne

Still at 100%--& chugging along--getting things ready for winter---yep--does feel good to sleep on that(right) side.....

Keep doing ur stuff(VRT's/Running, etc..)---& it will be long gone..

Let us know what the New Specialist---has to say...

Hi Subs,

I'm so happy for you!

I've had my last vertigo attack on May 2 (second one) and now I'm finally doing great!

I still feel uncomfortable laying on my bad side and I don't ever look up and I try not to bend down...

But someday I hope I can...

Did it take you a long time to act normally or did you feel like a tin man?

It's so cold now... keep warm ^.^

I'll tell you all about my visit...

But do you think it's ok to re-do the tests?

Do you think that the crystals will come loose again?

What is the MEP?

Should I do that all the time too?

Thanks,
maryanne-k

Hi Subs,

I'm so happy for you!

I've had my last vertigo attack on May 2 (second one) and now I'm finally doing great!

I still feel uncomfortable laying on my bad side and I don't ever look up and I try not to bend down...

But someday I hope I can...

Did it take you a long time to act normally or did you feel like a tin man?

It's so cold now... keep warm ^.^

I'll tell you all about my visit...

But do you think it's ok to re-do the tests?

Do you think that the crystals will come loose again?

What is the MEP?

Should I do that all the time too?

Thanks,
maryanne-k

Hi Maryann

..."do you think it's ok to re-do the tests?

Do you think that the crystals will come loose again?"....

They could...but...its not likely...if ur already Dx'd...why are u seeing him/her & having the tests done...I understand why...they would want to redo them...it is standard practice...for them...they don't want to take the chance that the tests were not done correctly & things might have changed since the last set.....When the Univ of Penn Balance Center...redid/reran mine...about 9 months after I first got it the BPPV...when I was hung up at 80/90% compensation(see below)...had no problems....

..."What is the MEP?"....

The MEP is short for Modified Epley Procedure---that u can do at home...in the "sticky" information