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Old 02-17-2013, 05:44 AM   #16
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Re: BPPV , can u please share expirence with the elpley - did it work for u ?

Dear All :

thank u , i must say it again and again cause it does help , I meant to say Mild Symptoms Quincy , not Mind - just made a mistake writing but also , my symptoms are not that mild today , well it's always like that , some days are bad , some are worst , the book u suggeste sounds great only that i am so poor now as i can hardly work and before my illness my job had to do with being physical so i am not able to order it online now but i will keep that in mind , at the meantime i write here and try to get answers , yes i do my research and i read loads about it , sometimes too much i think - what i try to achieve in this forum is to have the wisdom of those who had to go thru the disorder , yes i do fear it , mainly now because i am not capable of managing it cause i have to wait for the bust pros. to give me some of their "precious" clinic time , so of course i live in certain fear to wake up and have even worst day than normal , i also fear the Epley but we talked about it already , i will have to go and have it - i hope to get out of it in better state , upsets me being stuck inside that limbo but i am sure people here feel the same , I also hope the epley will help me to have my balance back , Quincy I have to ask u something , i read few of your posts and u did posted loads :-) , i saw that years ago U and another user in the name of SUBS30 were really the masters of the BPPV board , do u know what happened to him ? did he managed to recover completely and left the board and was his case a pure BPPV or BPPV on top of other inner ear trouble ?
Thanks for all the info u bring here - all of u people

 
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Old 02-17-2013, 12:10 PM   #17
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Re: BPPV , can u please share expirence with the elpley - did it work for u ?

Hi Kapi
I had it for the 1st time yesterday morning and got my husband to do it for me today a as well as the doctor says I should do it daily for a week then reduce to 3 or 4 times a week the next week,however to be honest I don't feel any benefit at all at the moment ! I too have read up alot since mine started July 2012,things were very bad then and I was off work for 10 weeks,barely able to move at all,unable to care/bath for myself,I did not drive for 4 weeks and it was really awful,so am totally sympathetic to anyone suffering.
It's now 7 months on and I still feel whoozy on and off throughout the day,along with ear noise and fullness on occasion,my doctor from the beginning said I have Labrythitus ans I have also seen a physio and they said Labrythitus but the ENT consultant yesterday didn't actually say what it was but just went straight into doing the Epley manouver which I knew exactly what it was,what did concern me was he never mentioned sitting up all night which I had read ! and I had drove there alone and was worried how I would feel after,it didn't feel good at the time and made me feel very strange ,so for me with my symptoms no longer severe as they were,it doesnt appear to have made any difference so far but I will persevere.
I think it's worth a try to see if it could help you.

 
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Old 02-17-2013, 12:33 PM   #18
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Re: BPPV , can u please share expirence with the elpley - did it work for u ?

Dear Florida

thank u , yes i will try the Epley , to be fair - i am not a doctor but u r describing some symptoms that are not typical for BPPV and it is very possible the doctor did the epley just because he assumed it can't make anything worse , it did make u feel bad because it is possible u r suffering from some lack of compensation after the vestibular upset u had , this is why VRT can be of use , well i am not a doc really and I know BPPV can come on top of other Inner ear troubles but it is very possible an epley for u at the moment is a placebo , try to find out about VRT if u have not - damn doctors , they could not care less about the dizzy ones :-)

 
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Old 02-17-2013, 01:07 PM   #19
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Re: BPPV , can u please share expirence with the elpley - did it work for u ?

Hi
Yes I tend to agree with you,I think that my brain and vestibular system hasn't recovered from the Labrythitus ? but it is strange my own GP said Labrythitus and so did the physio,she said she herself had had BPPV herself and even though there were some similarities the symptoms weren't exactly the same,so not sure what to do ! I have to admit the physio did give me some exercises to do)a lot in fact ) but have been stuck on some of them and she said to persevere with the one I'm stuck on before moving on,however she said to do them 4 times a day but I'm out 9 to 10 hrs a day with work and find it disappointing that they don't seem to be working.
The ENT consultant barely took any back ground info off me re my symptoms,so I'm guessing the residual symptoms I have been left with are the same as BPPV ? or appear to be from what I have read.
It's been a long 8 months nearly and pray for the day when I can get back to my old self !Does't help I have other health stuff going on as well.
I think it's great we all have each other for support.

 
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Old 02-17-2013, 03:32 PM   #20
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Re: BPPV , can u please share expirence with the elpley - did it work for u ?

Yes Florida , lucky we can chat - by the way , where is your physio based ? I live in London .

your symptoms don't sound really like bppv to me , well - there are few things that make bppv symptoms unique in a way - the last short duration and the respond to certain positions and if one will be put into halpike test he or she should have some latency then a build up of spin that will climax and subside in the time frame of anything between some seconds to a minute or a bit more , also it does not come with other symptoms such as fullness in the ear , ringing or hearing loss - if these are part of the daze and it's more abstarct kind of spin , lightheadness , u name it - then it is probably something else and also , well - bppv can bring and does bring brain fog and some odd symptoms but these are the outcome of overdosing the brain , i ca basically tell u that i can "control" my symptoms , if i lay down i will get the spin , short one and then it will subside and stop , if i keep my head still and walk i won't feel symptoms at all ut then again , u move a bit and u feel something wrong .

the VRT is hard but is important if u have a vestibular damage , u can come back to better state if u do it , u should i think do it even if it means putting the times and the suffer - i have heard of people getting some very good results with it after not too long , even people who lost a complete side of their balance managed to get better with VRT , i guess it's needed , it's a damn hard thing to deal with , inner ear troubles - i swear to u , the moment i will be better i will do something to raise the awareness of inner ear prolems at the UK .

 
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Old 02-18-2013, 12:53 PM   #21
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Re: BPPV , can u please share expirence with the elpley - did it work for u ?

Hi Kapi....I don't know what happened to SUBS30...yes I do remember him/her now that you mentioned it, without looking back.

More things were fresh in my mind at that time as well...so they'd definitely be more accurate regarding events, etc.

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Last edited by quincy; 02-18-2013 at 12:54 PM.

 
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Old 02-18-2013, 03:31 PM   #22
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Re: BPPV , can u please share expirence with the elpley - did it work for u ?

Hi Quicny , just was wondering , anyway - i am still waiting to be seen by the doctor , not great days at all , god i wish i had the ability to do the epley to myself!
I hate myself for not having the skills and courage to do it , i really want to get out of that loop , you understand me I am sure - I can't stop thinking what will be if the Epley is success , i dream about it - i have so many other problems which are related to my condition but are not health issues like money issues that rise because of my condition , I am telling u , i wish i could have had your mindset for just 10 minutes and finish with that damn procedure

 
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Old 02-18-2013, 10:48 PM   #23
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Re: BPPV , can u please share expirence with the elpley - did it work for u ?

Tell me again why you won't do it? You get dizzy anyway just laying on a pillow. No different than turning in your sleep.

What exactly are you afraid that will happen?

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Old 02-19-2013, 03:44 AM   #24
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Re: BPPV , can u please share expirence with the elpley - did it work for u ?

Dear Quincy
I don't really know , I am afraid of feeling worst after it somehow , I am not even sure if i make sense to my own self -i am consumed by the fear of it i guess , u r right - i feel same symptoms when i lay down on the pillow , i guess the epley does not scare me that much and i know i have to get it to be out of the cycle i am part of now but basically i am afraid of the unknown and i even know i go no real reason to be, as I have mentioned in the past my trouble is a pure form of BPPV with no other pathologies on top but since it's been with me for so long it made me afraid of the unknown in a way , there is no real logic there and i am aware of it but fears are like that :-(

 
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Old 02-19-2013, 09:43 AM   #25
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Re: BPPV , can u please share expirence with the elpley - did it work for u ?

There are two...the Epley and the Modified Epley The Epley...can be done with a pillow and not over the edge of the bed.

I don't think you'd feel much worse except during doing it. Each level of movement will possibly have the feelings, and some stronger.

Put it this way...they eventually resolve, but you have to wait it out.


Lots of videos on it to explain...but you'll be having it done next week, so it won't be a biggie to wait since you're not in an extreme state at this point. Having it done with someone there to explain has a huge level of comfort as well.

One thing...ask the doc if you're having more problems if you can get in sooner than waiting for weeks.

Hang tough....looking forward to hearing about your experience with it.

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Old 02-19-2013, 10:22 AM   #26
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Re: BPPV , can u please share expirence with the elpley - did it work for u ?

Hi Kapi
I have to say I know what you mean ! when I was really bad last year and remembering back how I felt I would have found it difficult to have had the Epley done,it's only because I am much better than I was that I had it done but also I was not expecting it either ! so maybe that was a good thing.
The doctor who did it once sent me off home to continue it myself so am guessing that no harm can be done,I googled the Epley and found the best pictures along with
written instructions so I then felt better about doing it,I have heard its really good for BPPV but have to say it doesn't have appeared to have helped me as yet but have only done it 3 times so will continue to try a bit longer but I would say have a go.

 
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Old 02-20-2013, 02:00 PM   #27
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Re: BPPV , can u please share expirence with the elpley - did it work for u ?

Thank u Quincy and Florida31

great help you are ladies , I can't wait to get the Epley done , my case is SO bppv it upsets me even more i have to wait like that and suffer without any form of management , I can wait to get the Epley done just to clear my head of that terrible thing , I truly had enough of it , by the way Quincy , u stated before u had BPPV in 2 ears , what is the best strategy u think in case u r not sure what ear is involved ? would u do right epley side and then a left one ?

i'll tell u why i ask , because when my bppv started it took me ages to see the specialist and i started doing some reading and discovered the epley , back then i had no big questions regarding it , it just looked to me like a simple drill , well i was not keeping the correct angle when laying down , it seemed not to work , anyway - one day when i felt like i have to do it again , i just laid myself quickly and kept the 30 degrees down off the bed , it was on the left side and i was spinning like hell , what happened was that i was not even ready for that and freaked out , i counted 30 seconds and moved to next step and keep on till i finished the epley , my mistake was that i was still left with symptoms because i did not finish the epley right and did not let the vertigo subside properly , anyway after that i saw the specialist and he put me into left halpike , i felt weird but no true spinning and then after i struggled with that for ages i had the chance of seeing another doctor , i tired not to test myself anymore at home cause i was tired of it so when i came to the doctor she asked me , what is the ear involved and i have said : left , because i was sure it's the left but somehow i tended not get symptoms really with my left , that is why it took ages for me to be taken seriously , anyway - i suggested her to test first the NEGATIVE side , means the right cause i always suspected it , she put me into right side halpike , we waited a bit , i felt a build up and then it flared , i had a spin on the right side , it had latency and it lasted maybe 15 seconds but it was not violent , still it was a spin and she could not see eye movement so she felt a bit confused and that it the reason why i was left untreated , but i want to know what is your idea regarding the fact that i was sure it was on the left but it happened on the right , i myself not sure anymore - it's very strange of course i took into consideration the idea it might be 2 ears BPPV case and yet i am not even sure , i did not have any head injury or anything as such , i never had history of inner ear problems and no one in my family or extended one had , i am not saying it is impossible but i just wonder what are you thinking

Thanx

 
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Old 02-21-2013, 12:52 AM   #28
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Re: BPPV , can u please share expirence with the elpley - did it work for u ?

Hi Kapi
It sounds as if your unsure which ear its affecting so it would make sense they do the Epley for both ears ,it's not going to hurt and that way at least you know it's being treated.
I have still been doing it daily but feel no difference as yet after 5 days.
You talk about the Halpike ? what is that ? as havent tried or heard of it,need to do some reading up.
So when is your treatment Kapi ?,will be very interested to hear your experience.

 
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Old 02-21-2013, 05:07 AM   #29
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Re: BPPV , can u please share expirence with the elpley - did it work for u ?

Dear Florida

I have to see the doctor next week and i will let you know what happened , yes they might have to epley oth ears although it's my right ear that gives me the trouble , i just said that when i was starting to understand my problem i was sure it was on the left but hard to say really , this is why the HALPIKE test was invented , this is basically the first step of the epley , the doctor turn your head 45 degrees to one side and drops u quickly into laying down with head extended in 30 degrees of the bed , if u start spinning that means that the side checked is the symptomatic one , the same test can e done to the other side , this way they can figure out which side is the trouble , on top of that if they get eye movements they can understand even more what canal is affected and even if treatment will be working , if they check the eye movements on each step - anyway , back to your case , i guess they epley can't do any harm to you and you have been doing it for few times already , if it does not work it might be that it's not bppv at all, as we know , not all dizzies are bppv and there are well defined characters to bppv because of the mechanics behind the probelm - if u do suffer with bppv u'll have a short spin that will subside after some seconds to a minute at each step of the epley or at least at some , which means - if u r put into the offending position and then u start feeling dizzy and it builds up and then subsides and stops after lets say 30 seocnds , 45 or a minute then it's bppv , if u r just feeling bad or weird or just spin and spin at that position with no real time frame or some kind of a pattern that co relates with BPPV then it might not be BPPV , so i guess u should find it out and if it's not bppv then VRT will be your answer and you should do it in my opinion cause it can give u your life back

 
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Old 02-21-2013, 08:40 AM   #30
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Re: BPPV , can u please share expirence with the elpley - did it work for u ?

Hi Kapi...when I was first affected with BPPV at age 11, they didn't know what it was. I wasn't diagnosed until i was 22 by the doctor who knew what it was and was pioneering in the field of it. Treatments varied throughout the years. It was my right ear that was affected.

In 1999, I had continual BPPV symptoms and saw another doctor because mine was retired. It was my right ear, and the Semont did help for a short time, then back again. By 2000 in the summer, I went back to the doctor, and it was discovered that I had it in both ears...a disappointment to say the least. She realised that when she flipped me over to the left side, and the resulting nystagmus showed her it was both ears and both eyes reacting in different ways....sigh.

So, she couldn't treat me and sent me to another specialist...shich really burned me because I had to wait MONTHS...

It was that time I got the books I mentioned. When I saw the new specialist he did the Epley and set me up for further testing.

The right ear had resolved itself, but the left ear was still reactionary.

When you see the new specialist, he'll determine what you have....plus set you up for testing I would assume.

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