BPPV , can u please share expirence with the elpley - did it work for u ?
 

Hi
I have been suffering from a mild form of BPPV for 2 years now , when i say mild i don't mean that it's easy cause otherwise i won't be bothering asking for your kind help , i mean to say my kind of BPPV is the one who responds to Halpike right side , after few seconds on the position i get a spinning sensation that lasts for anything from 10 - 20 seconds but i don't present eye movements , spinning is not violent but it does happen , anyway - it's a great everyday suffer and the reason why i was not helped by the medical institute has to do with lack of care on thier side or the lack of ability to do anything which is not pure text book , anyway - i want to get the epley done , i have heard of the procedure and heard quite a lot about it , i want to hear from your expirence with it , did it help you ? did you come back to normality after that ? , what did you feel afterwards ?

my bppv is primary and came with no previous inner ear problem or head injury , i will appreciate your help and in need for it , looking forward to hear what u say

thanx

Re: BPPV , can u please share expirence with the elpley - did it work for u ?
 

Hi there Kapi,


I have also been struggling for about 2 years now. Glad to say that it is about 70% better now.

I started with a wild vertigo whilst looking under the car 2 years ago. Thereafter heavy dizziness and brain freeze; pillar to post, scan, etc. I was told by the local ENT that it was probably BPPV and that "it would pass" . Easy said.!

I could not look up or down, read only at vertical angle in front of me. Looking up or down gave me dizziness and brainfreeze (this was the worst!) and would take hours to subside. First I did not even know what caused the dizziness until I discovered that when I held my head level, the dizziness slowly subsided.

I started looking on the web...etc etc. Started doing Epley movements myself and partner. This gave me relief. Start with 3 x day, say for a week, the one ear, then a week, the other, if necessary. Or perhaps 2 or 3 weeks, whatever feels comfortable. It does not seem to do any harm. Thereafter I used the Epley as a "treatment" after reading "with my head in the wrong position" and this worked. I also have problems in a car with stiff suspension, or a bumpy road, makes me dizzy. Also driving over a crest can give me nystagmus. This can be scary. I only found out much later what was happening.
Now about 2 years further, the symptoms are slowly subsiding and I am using Epley every now and then as a treatment. I dont know if it will ever go away 100%. For now I am fine, and it is "liveable". Much better than before.

I hope this helps you and gives you some hope,

Good Luck!

Regards

Re: BPPV , can u please share expirence with the elpley - did it work for u ?
 

Thank u very much dizzy Bushman , i wonder , so in the case the Epley works - what should i feel , will i have a relief ? will i feel worst or are my symptoms will change shape?
thanx!

Re: BPPV , can u please share expirence with the elpley - did it work for u ?
 

Hi Kapi,

I don't know exactly what you mean...

As you do the epley, yes, you can get mild spinning for a few seconds, worse than your normal symptoms, that means that you are doing the exercise correct, to the correct ear, just go with the spinning, it should last a few seconds and fade. The more you do the exercise the less the spinning will be whilst doing it.
Generally symptoms will immediately reduce once you have done each epley movement, at least in my case.

You were not specific in what your symptoms are, is it also general dizziness and brainfreeze..?

Regards

Re: BPPV , can u please share expirence with the elpley - did it work for u ?
 

Hi , i have been suffering with the condition for 2 years and i dont have any inner ear pervious trouble , BPPV came out of nowhere , i suffer dizzy when laying down or sitting up , of course that i feel in between uneasy feeling , like off balance , it is the cause of the bppv , if i stay still or does not move my head i will feel normal but if i walk and act normal i will feel odd , it makes sense since my canal is affected with these crystals moving around so of course if i walk a lot and move around i will feel some brain fog as the eyes work too hard but i never suffered any kind of long latsing spinning or hearing loss , or tinnitus - my case is classic BPPV but of a milder kind , yet i am afraid of the epley , i will have it done this week by a therapist , i am not so afraid of the spinning in the epley but of the after math , how will i feel after - i have been living with that for so long i dont remember anymore what it feels like to be free of all that grabage if you get my point :-)

Re: BPPV , can u please share expirence with the elpley - did it work for u ?
 

Hi Kapi,

There is no need to be afraid of the epley treatment. Its just a position and movement of the head. You may experience slight vertigo at first during the treatment but this fades in a few seconds. After the treatment your general dizziness should slowly fade. You have obviously learned already to keep your head in such a position that it does not cause dizziness. Keep on doing that after the treatment. The treatment may not remove all the symptoms at once, more than likely not, so you might need a few more follow ups. I've done them 3 x day for 2 weeks at first. But will bring relief at first.

Don't be afraid and Good luck.

Re: BPPV , can u please share expirence with the elpley - did it work for u ?
 

H Kapi...I've had BPPV attacks for pretty much my whole life...but have had long periods without any. It started in 1966..right ear, and in 1999 it started as well in my left ear.

Interestingly, the maneuver that I had done for my right ear was the Semont, and it still works for that ear. The left ear...entirely different beast...the Epley works best for me. I do both for myself now...not wasting time to have the doctor do it since I now don't have one and wait forever to get it (with no symptoms by that time and they return the next day...go figure).

I had a stint of 2 years 24/7...and it being in both ears at the same time. Hope to never go through that again.

That's the time I was introduced to the Epley, and with doing it at home, it at least gives one the control of doing it as needed at first symptoms.


Have you checked out some videos of how to do it properly?

q

Re: BPPV , can u please share expirence with the elpley - did it work for u ?
 

I have watched more than few demos of the epley ,I understand the procedure , I am just afraid applying it to myself , I got a appointment made for ent doctor that knows how to do it , i hope it's going to be fine , tell me please Quincy , at the time that suffered for 2 years with the BPPV non stop how did it went away ? did u just epley it or semont it ? how did u feel after the treatment - did u get the relief u wished for ? did u actually managed to hit normality back ?

i am a mid 30's guy , always been healthy and never had inner ear problems before the BPPV , i hope to get past it with the treatment , thank u and thank u also Bushman for the kind help

Re: BPPV , can u please share expirence with the elpley - did it work for u ?
 

Hi...It was a very difficult time, probably the worst for me ever. I was working full time in education for the first year of having it....I didn't go back after the summer break because I was so bad.

As I look back, I started Sudafed daily for helping with sinuses, and that also seemed to help a bit with my balance...meaning it took the edge off and I was able to function a bit better. Walking felt like I was on a long swinging bridge, even putting a towel on my head felt put me into a spin and pressed me backwards..it was so weird.

The nystagmus were severe, depending on how I moved and I guess which ear was affected at whatever movement.

I was sent to another specialist by my ENT who could do further testing, etc. It took like 6 months to see him, and the day I had the testing, I was pretty good. (that was already a year and a half 24/7 symptomatic) He did the Epley for me, mild symptoms, and I guess it helped a bit for a few days. So, not as bad as he expected considering the symptoms I was explaining, and he told me to come back when i was more symptomatic...and of course that didn't take long. I called and was refused an appointment immediately, so I never went back.

On that note, I started the Epley myself for the left ear, I tried the Semont for the right ear...I flipped, I turned, i did eye exercises, I didn't favour either side, I slept however..etc.

Eventually, the right ear cleared with the Semont....wow, that was scary because I thought the spinning would never end...but it did. I was a good girl and didn't sleep on that side for a few days.

then I started the Epley for the left side...eventually it subsided. I had many ups and downs with it. I purchased a good book called "BPPV: What you Need to Know"...that helped a lot. I also had "Feeling Dizzy" by Brian Blakley..that was the Doctor I saw, actually.

There's really nothing scary about doing the Epley...I do it when I'm feeling a bit off as well...maybe a bit sludgy in the canals. It helps.

I do it on my bed, head leaning back over the foot edge and on the right side (facing the bed). Reason is that it's my left ear I do, and it's easy to end on that side of the bed in the last sitting position.

Try to keep things in perspective. You have the opportunity to do it yourself at your convenience and a few times a day.

Don't stop the spinning...wait it out, because it will subside. Have your head facing to the left (if it's your left side affected). Don't move it except to hang it over the edge of the bed. (it will be in basically a 45 degree angle, sort of like this \_\ ) Lie there till the dizziness is over or whatever feeling is over. Then just move your head to the right, angle the same as the left was, looking line this /_/ . Stay there until whatever feelings are done...not less than 30 seconds, and maybe as long as a minute or more. then roll over with your head facing down, but don't change the angle of the position that it was when turned to the right, like this / 7 .
Stay there for whatever time you need.
Then sit up...NOT moving the angle, and remain there till all is calm.

Basically, your head will be moving from left to right, putting the fluid through the canal through positioning your head/body.

I'd do it morning when I got up, maybe once during the day, and before bedtime.

The point....whatever ear is affected, have your head turned in that direction to start. End it with the head in the opposite direction.

I wouldn't do the Hallpike inbetween.

Keep us posted how you do.

q

Re: BPPV , can u please share expirence with the elpley - did it work for u ?
 

Wow , Thank U Quincy ! I got an appointment for the end of this month to get the Epley done , i am not yet sure i can apply it to myself although i understand how to do it - I wish to be normal again , i used to be heavy into sports and i am quite young , i am not even sure where this BPPV came from as i had no head injury or any ear troubles before , i guess it comes - half of the cases are unknown - i just wish to see the epley work and back to normal , tell me by the way , after the epley - do u feel good enough to go and work out a bit ? - not sure if u do so but just in general i ask , thanx for all the comments!

Re: BPPV , can u please share expirence with the elpley - did it work for u ?
 

Hi Kapi,

You will need to take it easy in the beginning. The first Epley treatment takes the symptoms away so that you are no longer dizzy or have brain fog for a few hours. If you however put your head up or down again after that, symptoms may come back, and you will need treatment again.
You need to be patient. Even with Epley it may take a few months for your head to totally clear and that you can sport again. Have your Epley done as often as you can. Introduce sport very slowly, and only do those exercises that keep your head in a level position at first. Good luck!

Re: BPPV , can u please share expirence with the elpley - did it work for u ?
 

Hi...I'm not into sports, so anything that you do that has you banging into others or running can sometimes jar the otoliths loose.

I try not to baby myself, the first day I'm dizzy....I take for myself to get reoriented (because the nausea can it hard). Sometimes driving can be a bit off, but it's never been a problem unless the nausea is bad, so my husband will drive me wherever.

Patience is definitely the key point. I hope for you that this will be a minimal thing in your life....for me it's been good, then not, then good, etc.

What sport do you do?

Good you have an appointment to have the Epley done...too bad you have to wait so long.

Absolutely maybe try it at home....you won't hurt yourself, but you will have some symptoms while doing it that can be off-putting.

When I'm "off fuzzy feeling", the Epley can help clear it. When I'm in an outright attack, yes...it makes it a bit better for functioning. Sometimes it clears it up right away....sometimes it can take a week or longer and then one day it's totally gone.

Get that book I suggested...BPPV What you Need to Know. it explains so much stuff. As well, it offers eye exercises and other exercises to help get your brain back into good state. I still have some visual sensations on some things I look at (especially on tv), but they're fast and over fast. like the top of my head is being lifted off and put back on..weird.

My lifetime of having this (since 11 years old after a fall that caused whiplash AND falling on the ice where I hit my head) has been a frustrating one at times...I also have other health issues. I didn't find out till I was in my late 30s that my mom also had BPPV...It would have helped that she had shared it. Misery loves company...So, it seems I may have come by it quite honestly as all the other crap.

Point is...you have it. Learn a lot about it, learn how to deal with it. Address sinus/nasal issues...even a neti pot or sinus wash (I use the NeilMed squirt bottle that mixes powder with water) will be very helpful.

Keep us posted how you're doing.
q

Re: BPPV , can u please share expirence with the elpley - did it work for u ?
 

Hello Guys , Thanks for the answers -love this board where people can really help you with their own exprience .

well , I used to do all kinds of sports , mainly cycling , sometimes running , in general i was very active , i still try to be as much as i can with the symptoms - i know it's a shame i have to wait to be epleyED , i wish i was like you people , capable of doing it at home alone .
At the moment i suffer some kind of mind symptoms but i feel them when i lay down , when i look down , also when i walk feel weird - it's not violent vertigo , it's kind of spin or being off or weird but it does responde to positions in the sense that when i lay my head down on the pillow i feel fine for few seconds and then a weird build up of a sensation , more like a subjective spinning of the body , it lasts for 30 seonds or more , some days it's worst - some days bit better but i understand i need to learn how to manage it with epley , to be fair - the epley less worries me as much as the outcome , don't know why in my head i got all these fears running such as : what will be if I will make a mistake or lets say it worked - what should i feel ? shall i feel better ? will i feel odd - it's the insecurity that comes with bad doctors and living for long with an illness and it does not help to read all kinds of horror stories of people on the net , at least i know what i am dealing with - i see a lot of people posting on dizziness and they don't even suffer from BPPV or maybe they have that on top of other things and the doctor just tortured them with an epley for no reason and they feel horrible , etc...

i am just really sharing my fears here , i understand the epley and the way it works , i want to believe doing it will be the answer to the problem .
by the way , doing eye exercises - i have heard of that , did not the epley helped u with getting better ?

Re: BPPV , can u please share expirence with the elpley - did it work for u ?
 

Hi...it's not mind symptoms, it's the connections of visual/vestibular/motor functioning that all work together sending messages to the brain. It's the perception of the brain from those messages and the symptoms that result from it.

You know how you can walk with your eyes closed or even your ears blocked...everything is off...even the way one walks until one gets used to functioning with that "handicap".

When you lie down, the canal(s) not being able to send info to the brain properly and the brain compensating for the misinformation...it comes, it goes. You'll get the same sensation when the Epley is done.
Sometimes when i feel it coming with the first ever attack, I'll flip myself over to the opposite side. Sometimes the result will be a worse spell, and I see that as sometimes relieving the canal quickly of the debris, or if an otolith is attached to the cupula, that it's boomeranged off.

Fear...well, you don't have the experience of the Epley, the semont, the relief, the return and what you can do yourself yet.

Yes, there are bad doctors out there and lousy at diagnosis. I was seen originally by a doctor who had BPPV himself and was a pioneer in the development of a clinic for testing and treatment. It was a lifesaver, and I was able to get in to see him asap symptoms started. When he retired, I had seen another doctor who told me he doubted I had BPPV because I wasn't displaying symptoms.
I never went back...why? because he dissed the diagnosis and I wasn't symptomatic when I was able to get in to see him. Benign and Paroxismal are two factors in the disorder. There are also degrees of attacks, and there can always be other circumstances happening at the same time. There can be sludge or individual otoliths, cupula or canal being affected, etc.

The last doctor I saw suggested I have the surgery to cut the canal/brain connection....I seriously thought about it....but once I started to do the Epley myself and take the Sudafed, and dealt with the sinus infection...things started to improve.

I fear growing old and being dizzy....I fear it won't ever go away...but at least I have some tools to deal.
That's not to say that other issues can't happen as well or pop up with other disorders....hopefully that can be differentiated and I'll heal from that as well.

Since you already have an appointment with a doctor who will do the Epley....I think that's off to a good start. You're already diagnosed...another good start.

Everything you're describing is what I have when I'm in an attack. When I'm not in an attack...I have no dizziness, but can feel off. Some mornings I can walk straight into a wall...like by body is going in the wrong direction.
I recently found that when I'm on the treadmill and if I turn my head to the right..I can end up off the treadmill if I don't hold on.

I also bought a balance board. The first time I tried it I got very weirdly disoriented in my head....the feet/vistibular connection.

I have to start doing important exercises NOW at 58 to hopefully prepare my body/balance/brain to work well as I age.

Hang tough...you won't get all the answers at one time. You can live a normal life functioning as you are....you will adapt. Try not to overprotect yourself, stay strong physically, but don't do things in excess that might trigger an attack...especially right after you've had one and are recovering.

DizzyBushman's suggestions/info is excellent.

Please look into that book I suggested.
q

Re: BPPV , can u please share expirence with the elpley - did it work for u ?
 

Hi there
Well funny you should ask !
Mine is a long story but started last summer(best to read back on my notices ) but in answer to your question I went to see a ENT consultant yesterday morning after waiting 4 half months after the referral was put in .
My doctor has said all along I had Labrythitus and also saw a physio for few sessions who said they thought it was Labrythitus too,however because my symptoms I am now left with are quite typical of BPPV the consultant took no messing ,got me straight up on the coach and did the Epley !,I knew exactly what was going to happen as I had read so much about it in the past but was worried as I had gone on my own to the app and he never mentioned me not to drive after or anything else for that matter.
I didnt feel great for the rest f the day and still don't this morning but he said I should do it daily at home for a week then 3 to 4 times the following week !,am I convinced
that was/is the problem ? really not sure as my symptoms last year were severe and i couldn't even walk properly for few months,it wasn't atypical of BPPV so I thought.
If you want to give it try it may well be worth it for you and I do hope it helps.

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

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.

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 :-)

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.

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 .