I decided to try the Valsalva maneuver, and I got rotational vertigo. I was able to repeat the results several times. It felt like I was on a merrygoround that spins counter-clockwise. The vertigo feels exactly like the vertigo induced by the caloric test. I might have actually felt a little nystagmus too, i dont know for sure. I need to mention this to my ENT!
Darren, given what happens with the Valsalva (and, uh, I would stop doing that, at least til you’re in the ENt’s office!) and some of your other odd symptoms, have you checked out superior canal dehiscence? Just a thought.
— Begin quote from “Nancy W”
Darren, given what happens with the Valsalva (and, uh, I would stop doing that, at least til you’re in the ENt’s office!) and some of your other odd symptoms, have you checked out superior canal dehiscence? Just a thought.
dizziness-and-balance.com/di … at/scd.htm
— End quote
Thanks for the word of warning. I have heard of SCDS, thank you for mentioning it. I should also ask my ENT about this. 
Update: I noticed a few things that support my suspicion of a perilymph fistula. Before I tell you my new findings, here is some information that makes my findings relevant. I sometimes have a feeling of vertigo and false motion that I experience after movement of my head or my body. The false motion is generally on the same tune as my heartbeat. Also, when I stop moving, it feels like Im spinning counterclockwise. This feeling goes away if I lay down or sit down with my head supported against a headrest. I will feel completely normal after being in either position for a few minutes. So I decided to try the fistula test and valsalva maneuver on my left ear from these positions when my symptoms were almost unnoticible. Here is what I noticed:
The counterclockwise spinning vertigo and false swaying motion started immediately upon initiating the fistula test, and started immediately upon releasing my breath from the valsalva maneuver. In either case, it takes a few minutes for the provoked vertigo and false motion to calm down.
I know that rocking can be caused by PLF, but it is important to mention that this rocking started a few days after quitting Propranolol. I never had the rocking before taking Propranolol, so I dont know if its a coincidence. So this leads me to 2 theories:
1). I have MAV, and quitting propranolol made the rocking start. The fact that the valsalva and plf test made my symptoms a worse is a coincidence and has to do with increasing my heartrate, and therefor increasing the rocking and vertigo because its synchronized with my heart beat.
2). I have PLF, and its a coincidence that the rocking started a few days after quitting propranol.
My mom just told me that I had MANY ear infections as a child, some of them lasted for weeks to months. Several medical journals have mentioned the importance of a history of otitis media in PLF patients.
there are many variables and crossovers associated with vertigo and so the fun(not)begins keep us updated im curious to find the outcome of tests. have you recently, say in the last year/2 , had any ear infections :?:
I dont believe I have had any recent ear infections. But the first dizzy spell I had was during a bad cold, and the symptoms lasted only 4 days. The second spell started 1 year ago a few days after moving lots of heavy furniture and has been with me ever since.
i first got it after being incrediblely sick, my eyes went bloodshot (still are), sleeping 15 hours + a day,close to passing out, stiff joints,sweating,headaches etc. I had phenoumia that thought it was just that untill that until it cleared up and was still sick. A few months later woke up spinning, opened my eyes and they were jiggling so bad i couldnt see anything.2+yrs on im still spinning,off balance,heavy head,tinnitus,headaches etc but no ngstamus
Well I was correct, I do have perilymph fistula in the left ear. My ENT did the fistula test on me today, and the left ear responded with SRONG rotational vertigo. My ENT is still not convinced I have a PLF because my VNG was normal. But I am 100% convinced! I am going to get a referral from my GP to an otologist, I just dont trust the ENT.
My original diagnosis was bilateral otosclerosis and I had a stapedectomy in my right ear. But apparently the stapes prosthesis was too big and when it “unhooked”, I developed a perilymph fistula. I had surgery and the surgeon said that my oval window was torn in half. When Dr Hain asked me to do a Valsalva, I started out sitting on his exam table and immediately fell over. I could not walk without extreme dizziness for 2 1/2 weeks. For the time between seeing Dr Hain, the surgeon and waiting for surgery, I could not turn my head and went from using a cane to a walker to a wheelchair. At that point the only drug I was on was Klonopin. So…those were my symptoms with perilymph fistula. Does that help?
Claudia..who hasn’t posted in a long time
Thanks for sharing Claudia. I appreciate all the info I can get . I have also had periods of time where I could not even walk without extreme nausea and dizziness.
I always have a VERY small amount of fluid in my left ear, I feel it and hear it behind the eardrum. I usually only notice it when I lay down. But for the following 36 hours after my ENT did the fistula test, I noticed there was a little more fluid in my left ear than I normally have. I have also noticed that I get more fluid in my ear on days when my dizziness is worse.
I talked with an Otologist at a local university and he said my history is suggestive of a fistula. He wants to see me, and do a VEMP and CT scan of the temporal bones.
hey darren, hows it going i gather you had all your test back from ent with no real answer. Whats the test for Perilymph Fistula out of interest?? Maybe your onto something let us know when you have more results, good luck
Hey becd,
My ENT ruled out all other ear problems and central problems. My VNG, audigram, and MRI all came back normal. He thew his hands in the air and gave up on me. He thinks a fistula should present with textbook symptoms and showing nystagmus from the fistula test. If you read any literature, you will find this is NOT the truth in the clinical setting!
A fistula test is done by depressing the tragula to create pressure, or by using a pneumatic otoscope. A positive fistula test is determined by the presence of vertigo and/or nystagmus. If you read literature, you will see that the fistula test only works for about 50% or LESS in patients with confirmed cases of a fistula. A valsalva maneuver often causes an increase in symptoms for patients with either a fistula or canal dehiscence. Both of these test cause an immediate increase in symptoms for me.
A fistula diagnosis is based upon a careful examination of the patients history and exclusion of other conditions. Most patients will have some type of traumatic event close to or immediately before their symptoms started. In my case, I had a hard direct blow to my left ear shortly before symptoms started.
Here is some information I borrowed from Dr. Jeremy Hornibrook:
Chronic PLF following head trauma or whiplash is nearly always from a patent fissula ante fenestrum at the oval window,well distant from the semicircular canals. In the literature the frequent and erroneous use of the word “vertigo” is highly misleading. It is seldom emphasized that the three predominant symptoms (unilateral disequilibrium,nausea and motion-intolerance) are due to the adjacant otolotith organ disfunction, with canal function remaining normal. Classical “fistula tests” do not apply.There does not have to be hearing loss or tinnitus.In contrast to nearly all other causes of dizzyness the patient is rarely without the symptoms and is immediately reminded of their presence when they awake. Careful evaluation of balance reveals a distinct unilateral instability. A Tullio Phenomenon (Increased dizzynes with sound) may be present.
In my own series of patients with PLF at least five denied a trauma history,with symptoms present from 18 month to 4 years.One later remembered being struck on the head by a ladder,one had not remembered an injury documented in the old hospital notes,in two no history trauma could be established.Once free of symptoms one female patient (round window fistula) admitted that it all started when her husband had “smacked” her ears.So nearly always there has been a traumatic incident,but the patient may have forgotten it or even conceal it.
A problem with PLF is that it usually follows head trauma, which may have been considered trivial.This is compounded by a wide variation of individual susceptibility to brain injury,even from mild head trauma.In a comprehensive but rarely study from Portland Oregon,on patients with mild head trauma with PLF appeared to have impairments of memory,auditory recall,learning and mood.There is increasing evidence from other human and animal studies that patients with acute vestibular disorders can experience cognitive dysfunction.PLF is an example of a chronic unilateral(otolith)vestibular disfunction
In summary,the symptoms of chronic PLF are unilateral disequilibrium,nausea and motion intolerance,often with a subtle sense of "not coping"There is usually a trauma history(not always)but it may be forgotten or concealed.The defect,usually at the fissula ante fenestrum,is beyond conventional CT resolution.The disability from a chronic PLF is significant, and justifies a simple tympanotomy when there is a high index of suspicion.
darren you know what annoyes me the most, this is such a life recker, i was bedridden for a year, and i feel dr just arent investigating thoroughly the cause of vertigo. i think i am better placed now to ask appropriate questions than some drs. many assumption i believe are made. they have asked me very few question ,i only got some ear testing 2 years later. they still cant give me real answers to why i had a massive explosion in my ear, and now that ear has vest nerve dysfunction (otilith)and another test was 28something and over here 30 is significant (so they say thats nothing ur still 2 off), what was the bout of chronic ngstamus when i couldnt see,normal 4 mav??etc
drs say oh you had migranes a number of years ago so thats it, without saying ive tested for this and that, ruled out all possiblities etc so i think its this…
anyway sorry to ramble at least your onto it, you know youve had a knock and can demand testing due to it and your symptoms with lack of migraine history, hopefully youll get answers. keep us updated. (wish i was 15 again id be looking at a career in vertigo chanellenges)
I know how you feel becd. My ENT told me to just hope the symptoms will go away. He said this after evoking strong vertigo from the fistula test… Hes clueless!
You have to work to find good doctors. I emailed a few otologists and they were very supportive of my suspicions, and wanted to see me.
— Begin quote from “ichbindarren”
I know how you feel becd. My ENT told me to just hope the symptoms will go away.
Well i was told by first neuro i saw it would be six months and then go( told i had VN at that stage),so i was bedridden staring at a dot thinking hold on its only a few more months, and coming into my 3rd year ive still got it and the symptoms are still here and its not just going. sure im dealing with it a bit better, but im still quite bad and some days are a write off. Definately get another opinon, you dont want it going on & on like mine. Ive seen an ent and 3 neuros, im still stuck with try this and that and see if we stumble onto something that helps, basically the med ginney pig.Onething i know, its not going away on its own!
— End quote
I would get another opinion if you think it’s a fistula, and if the dr. says you don’t have it, you might want to look at MAV-cause it’s the one of the most common causes of dizziness and it’s probably more likely than anything else. But, definatley go dr. to dr. to rule out anything else you think it could be. Looking at your symptoms, you might want to get checked for TMJ too. You can have TMJ without jaw pain and I think it’s something worth for you to have checked out. The ear pain, certain head movement causing dizziness, basically a few ear symptoms that could suggest TMJ.
I’ve been checked for everything too and I’m treating the MAV best I can at the moment. I’ve learned to accept my diagnose these days, but it wasn’t easy and still isn’t sometimes.
I think stressing out or thinking about the dizziness on a daily basis can also be a trigger. A very dangerous trigger at that because you can get stuck in ongoing cycle of MAV. I notice when I’m busy doing other things or am working on some projects-basically staying active, I don’t notice the dizziness as much and when I finally think about I notice it’s calmed down quite a bit actually.
So my thought on this whole MAV thing is, stay away from known and avoidable triggers, get your sleep cycle in order (early to bed, early to rise,weekends included), stay stress free, drink loads of water, eat healthy and do a little exercise (nothing streneous) 4 times a week, take your vitamins, throw in a med preventative and stay postively as active as you can-mindwise, don’t sweat the small stuff and STOP THINKING ABOUT BEING DIZZY ALL DAY, and in a few months of staying strict on that path, you should have MAV either beat or there just a little tiny bit. Much easier said than done- that’s why I’m still posting today. It is probably all that simple, but my will gets weak every now and again and I fail. But I do keep trying. One of these try’s I’m gonna get it right and be on my way.
It’s definately a life change when you do all that, but there will come a point we’re I’m gonna sacrifice the life I once knew to get myself back to normal. But it will be a new life and happier. It’s fun to think about sometimes. I just gotta do it. Don’t ever give up hope. It can lead to depression and you can fall deep into a place you don’t want to see. Been there done that and it’s behind me now so now I can move on to recovery of this MAV demon. Trust me, Depression with MAV is a disaster. Don’t go there-hear it from some of us on here. Learn from my mistake of letting myself get to that point cause of dizziness.
Greg