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Dove40 03-14-2012 09:18 PM

Please help. I have BPPV (Vertigo)

I have just been diagnosed with BPPV. (Benign Positional Vertigo). I have been suffering with these symptoms for the past 7 months:[LIST][*]Dizziness[*]Lightheadness (when I turn my head, look up or down)[*]Ears hurt (Extremely sensitive to noise)[*]Ears feel like they are full/pressure[*]Feels like the floor is "bouncing" when I walk[*]Arms are weak[*]Legs are weak[LIST][*]Slight balance problems[/LIST][/LIST]
I have been going to a Physical Therapist for 2 weeks now an the Epley Manuver is not working. It makes me dizzier and my ears get worse.

I am depressed and at a loss. These are the tests that I have had:
Blood Tests (Came back normal)
MRI (Came back normal)- Just showed Sinus infection
EKG (Normal)
Cortoroid Artery Ultrasound (still waiting for results)

Does anyone else have these symptoms? My ENT and PT doctors said that I don't have all the "classic" symptoms of BPPV and they think something else might be going on.

Please help me...

Lvpdizz01 03-15-2012 12:57 PM

Re: Please help. I have BPPV (Vertigo)
I was originally diagnosed with BPPV but doctors have subsequently changed their minds. I gather it is possible to have some BPPV but secondary to some other condition. I (and my PT and also my GP/primary care doctor) believe that my condition is viral in origin. A virus can cause damage to the inner ear which leads to balance and dizziness issues that can go on for a long time. Many of your symptoms are similar to mine, except I don't have trouble with the floor - but I believe that is common. Have you considered whether you could have had labyrinthitis or vestibular neuritis? Some of the symptoms are like BPPV, and I think that is what I have had. The treatment for long term sufferers is physiotherapy. My Pt is doing vestibular rehabilitation therapy with me. Each person needs their own exercises specifically for them. I too have tried the Epley which made me quite unwell. There are many other exercises you will be able to try. Your physio will probably turn out to be the best person to look after you.
I have made considerable progress in about a month/5 weeks but I still suffer with dizziness and false movement sensations. I have trouble in shops and places where there is lots of activity/ people. I have had to postpone my training course in teaching indefinitely unfortunately.
This week I have had quite a bit of time with no symptoms so I am positive.
I would recommend that you discuss with your PT whether vestibular rehabilitation is an option for you. the idea is that the exercises are designed to make you dizzy but that your brain learns to deal with the incorrect signals it is receiving from whichever parts of you have suffered damage. do don't worry if you get more dizzy with the exercises - it is a good sign.
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In the mean time please do not be depressed, and keep in touch with the forum. It may take a while, but you may well be on the right track if you have a physiotherapist.
Best of luck and remember you are not alone, there are many of us with similar symptoms.
Take care!

Lvpdizz01 03-15-2012 01:22 PM

Re: Please help. I have BPPV (Vertigo)
I should add that I haven't had weakness in my arms or legs but it turns out there is weakness in my neck and back which may have been caused by me trying to correct my posture and also avoiding doing some/most things due to my condition.
I presume that some of your tests are to investigate those particular problems?

Dove40 03-17-2012 08:58 PM

Re: Please help. I have BPPV (Vertigo)
Thank you for responding to me. If feels so good to know that someone else in the world understands what I am going through. What is labyrinthitis or vestibular neuritis? Is it similar to BPPV? What kind of exercises do you do to treat this? Is there a webite where you can post so I can see what the exercises look like? Are your ears sensitive to noise? Do they hurt when you are around noise such as pots and pans clanking?

I am trying to avoid stores right now. It gets really bad for me. Too much stimulation when movement, bright lights and noise... Oh year, I forgot to tell you that bright lights bother me too. I become sick. I sweat, get nauseous and feel like I am going to pass out. I get very dizzy. It is horrible.

The ENT and PT said that I don't have the "classic" symptoms of BPPV, but they think I do have it. I don't see the room spinning. I have a dizzy, fuzzy, lightheaded feeling like I am going to pass out. I am going to another ENT for a second opinion because I think it could be another problem. I actually think there are two different problems going on at the same time. Please tell me more about the disorders that you mentioned above. Which one do you have? Thank you.

Lvpdizz01 03-18-2012 10:22 AM

Re: Please help. I have BPPV (Vertigo)
Hi! Labyrinthitis and vestibular neuritis are both viral illnesses. I gather that the main difference between them is that the sufferer does not have any hearing loss with vestibular neuritis. I have not had any hearing loss with my condition.
After suffering from the virus, there are some people who do not return back to normal for quite some time. The virus can cause damage to the inner ear and then the brain has to learn to compensate for the damage. That is what the exercises are for: to help the brain to cope with damage and find a way of correcting it. Collectively the exercises are called vestibular rehabilitation therapy (VRT). You will be able to find loads of information on VRT on the Internet just by using the usual search engines.
I thankfully am not currently suffering from extreme sensitivity to noise but I did have a similar virus back in my 20's (I am now in my 40's) and I did then. I couldn't have the TV on. I think there are other sufferers on this website who have that symptom. Have a further look around.
I think that you can have BPPV on top of a virus so you may have some probs relating to the position of your head in addition to the other things you are having to put up with.
Assuming that your problems are all caused by vestibular damage due to virus/BPPV or a combination of both, the PT should be able to help with a program of vestibular rehabilitation. If your particular PT does not specialise in that, there will be another one that does.
If you need another specialist, there is a type of specialist who just deals with dizzy patients
- I think they are called neurotologists. You could look up whether it is possible for you to see one.
The VRT exercises start by movements of the eyes, then movements of the head, and neck etc. You will need a professional, though, to devise a program specially for you. You wouldn't want to make yourself sick.
The diagnosis can be quite difficult for doctors I believe, so I am not sure which virus I have had, but I do know that the exercises are having a positive effect.
You may want to just do a search on each of the viruses to see how your symptoms compare. I can definitely relate to the shops problem myself. I am just trying to go once a week and spend about 5 minutes in the shops to see how I improve week on week. I think that you are meant to try to teach your brain to deal with the problems that you have. You may want to try to make improvements with the exercises before you start, though. I personally have found a massive improvement simply after getting used to the first neck exercise. Apparently, necks can be a common problem with dizzy patients.
Anyway, hope this helps.

Dove40 03-22-2012 06:32 PM

Re: Please help. I have BPPV (Vertigo)
Hi again,
I just came back from a second opinion from an ENT. He said that I had no hearing loss. He believes that it could be 2 things at the same time: BPPV and maybe Labyrinthitis OR vestibular neuritis. He said to continue the therapy with my PT.

I forgot to mention earlier that I have balance problems. When I try to touch my ear, I hit my cheek. When I stand I have to hold onto a chair or table etc...

I went to my PT today. I can not tell if he is helping me or not. When I leave therapy my head is VERY heavy. It is whirling and my neck is stiff. My ears hurt (noise sensitivity). I am worthless the entire night. I can't do a single thing but lay down. Did this happen to you too? Do you think the PT is doing the Epley Manuever correct?

Thank you for all of your help and listening to me.

Dizzynscared 03-23-2012 03:52 PM

Re: Please help. I have BPPV (Vertigo)
I've had BPPV for 12 months though the symptoms have dramatically changed in that time, at first I had the bouncing vision like you Dove and dizziness when moving my head in certain positions, out of the two mentioned it was the bouncing vision that was the worst, it felt like I was wearing marshmallow shoes 'LOL', that was all back in March 2011, and now a year later I just have slight dizziness issues when moving my head up or down, the only treatment I had was anti-sickness tablets which were crap!! I'm a firm believer that the brain alone can fix the issues by calculating new ways of balancing you out (compensation), it seems that way for me anyway, I guess what I'm saying is that riding the symptoms out and carrying out tasks as normal as possible will alleviate all or most of the dizziness, if you can't ride it out then maybe Epley will help.

Armstead 03-23-2012 04:22 PM

Re: Please help. I have BPPV (Vertigo)
One question, when were you diagnosed with a sinus infection, and were you properly treated? Sinus infections can be ugly and cause a number of your symptoms... I have menieres disease--the dizzy disease. I am controlled with a diuretic (water pill) I have break through dizziness during allergy season which is also controlled with an antihistamine. Virus's can cause problems as previously stated, and the effects can be both short-term or long-term. A virus is the hardest to diagnose as it is a diagnosis of exclusion--can't find a better reason, must be a virus... I know this doesn't solve your problems but I can definitely sympathize with how you are feeling because of my own experience. I hope you find an answer soon. My answer was long in coming. Good Luck!! Armstead

middleone 04-20-2012 05:35 PM

Re: Please help. I have BPPV (Vertigo)
I am a long time sufferer of BPPV. The other post threads are really good for describing the physical therapy side of vestibular rehabilitation - VRT is very important for long term recovery. But, you need to get to a specialist called an oto-neurologist. These are docs with an ENT primary speciality but have a subcertification in oto-neurology. There are many possible reasons for what you are experiencing - even combinations of a couple issues. You might call your local big hospital to see if they have any of these specialists. BPPV is a very specific diagnosis that is made by doing certain movements and watching your eyes - in BPPV, the eyes move a very unique way depending on which canal the crystals are in. Some specialists actually have a machine called a Omniax to perform the adjustments. Just keep hope up and find a specialist. You may have to travel to find one. They are out there. In my case, I was misdiagnosed for years until I found someone who I trusted. Eventually I had the surgery which is done in only about 5% of the patients.

Imbo 04-21-2012 09:59 PM

Re: Please help. I have BPPV (Vertigo)
From the research I've read and my own experience with positional vertigo and other inner issues, BPPV is alarming but very easy to fix with self-administered Epley maneuvers. The problem is a lot of other inner ear issues result in BPPV-like positional vertigo symptoms. What you describe sounds like much more than BPPV even though it causes positional vertigo. As someone who has had BPPV on and off for 10+ years as well as lots of other inner ear issues, I'd strongly encourage you to learn to do the exercises at home and get a good ENT or preferably neuro-otologist to investigate the other symptoms. I also wouldn't ignore looking at sinus problems (or in my case allergies causing inflammation).

Lastly, even though Epleys make you feel worse, if done gently, they should be helpful in long term even if short term brings more dizziness. There's no magic to repositioning exercises other than a lot of repetitition and trial and error, so I've always preferred doing it in my bed rather than having a therapist. I love physiotherapy for other things, but I still don't see what VRT's can do for me beyond the simple exercises described on the Internet. Would love to hear from others if I'm missing something with what a VRT can offer for BPPV.

Flyher12 05-20-2012 08:08 PM

Re: Please help. I have BPPV (Vertigo)
I'm so glad I found this site! I've been suffering from BPPV(?) since Oct. of 2011. It all started one night when I woke up with the room spinning. Since then, I've had several MRI's, countless blood tests, comprehensive Neurological exams with all coming up negative. I finally found a RN at a local ENT hearing and balance center who specializes in this condition. During the first visit she did the Dix-hall pike maneuver which confirmed the vertigo and then she treated with the Epley. While performing the Epley, she said that the crystals actually moved in to a different canal and this made the symptoms different and worse. Instead of putting through more torture, she had me take it easy at home and then come back for another treatment.

Some of my symptoms that are ongoing include: extreme fatigue, slight balance problems, brain fog and false movement sensations especially when in bed trying to sleep or at work in front of the computer. Like other posters, I seem to have trouble with crowds, at shopping centers and busy airports. Another weird thing that seems to trigger a dizzy/unbalanced feeling is when I'm sitting in a work/swivel chair and I move very slightly. This thing has consumed my every waking moment and disrupted my once very active lifestyle. I hope to aggressively work on this through VRT and a positive mental state but sometimes it gets real difficult. The hardest part is trying to explain to family and coworkers what I'm experiencing. Any suggestions out there? Thanks

retiredmom1 06-01-2012 03:56 PM

Re: Please help. I have BPPV (Vertigo)
Your case sounds so similar to mine. I just began a blog on here and hope to post to it as I go through my treatment. I too was first diagnosed with viral labyrinthitis and now BPPV. I t has been between 4 and 5 months for me. This is so frustrating. Your comments about seeing a true specialist intrigued me. My GP sent me to an ENT and frankly I felt he did such a quick overview and shoved me out the door I don't know I'm confident in his diagnosis. Can anyone on here tell me exactly what kind of testing tells what section of the ear canal is affected?

annebitious 06-27-2012 04:46 AM

Re: Please help. I have BPPV (Vertigo)
hi dove...we have the same sins and symptoms...ive been suffering from this for almost 5 mos. and it really made me so unproductive...have you already found out what's doctor also said it was BPPV..lthanks

lfanner 06-27-2012 09:14 AM

Re: Please help. I have BPPV (Vertigo)
Please look into "verticle heterophoria
i have had all your symptoms and it was my eyes all along
a pair of glasses with prisim lenses and i am as good as new

lfanner 07-12-2012 12:20 PM

Re: Please help. I have BPPV (Vertigo)
Where are you located? I live in Vancouver and cannot souce out that particular brand in Canada!
Any suggestions?

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