So this whole thing started out with BPPV in my right ear. No one ever diagnosed me while doing the Dix hallpike but said based on my symptoms, it was classic BPPV (got dizzy rushes while tilting my head and felt unsteady all day). Anyways I performed the epley and summersault Maneuver on myself for 3 days and the spinning eventually went away when doing these exercises. But the off balance dizzy sensations kept progressing. The most bizarre thing about it is that initially when I did the Epley maneuver I did have a spinning on the right side and so it made sense that there were crystals moving around. But even after the spinning stopped, I felt unsteady and would have very strong episodes of dizzy jolts if I moved my head too fast or looked in the wrong direction. But it didnāt always happen in those same positions so it was quite bizarre. This has been going on six months now since - I originally cured the spinning sensation with the Epley. I have been back to three ENTs as well as two neurologists and there is never any nystagmus noted. Iāve even had the VNG ocular function done and no nystagmus was noted then either. So, hypothetically speaking, I donāt have BPPV as there is no nystagmus because there are no crystals moving around. So this would chalk it up to two things; one, the first neurologist suggested a migraine associated vertigo . Two, the second neurologist said itās no way MAV because I never have any rotatory vertigo and itās never episodic. She suggested it was anxiety. So Iād like to ask you, is it possible to still have BPPV without any nystagmus and if not, does this sound like MAV? I actually get more dizzy doing the Epley maneuver as I feel there is a lot of pressure going into my head and causing me to to feel more off-balance. It takes me a few hours to recover even though there is never any nystagmus.
I think MAV and positional vertigo can coexist. Or rather itās all part of the same disease. Iāve had positional vertigo during my MAV and I have to sleep on an incline to reduce risk of vertigo and improve comfort. Iām not the only one. It looks like his is true for the majority of MAVers according to my poll (over 2 to 1!!!). This proves to me MAV is NOT simply a migraine condition and there is probably something physical going on that is CAUSING the migraines.
Remember also that BPPV is a DOGMA based hypothesis. There is NO CONCLUSIVE PROOF that it is caused by displaced otoconia. Show me ONE SCAN that shows this?!
If we substitute the words āpositional vertigoā for BPPV I believe we are getting closer to the truth.
EDIT: Recently scientists discovered a pressure valve in the inner ear. I hypothesise that the treatment for positional vertigo might work by applying acute centrifugal force on the ear might cause this valve to open thus reducing the inner ear pressure instantly.
Over use of this procedure is known to cause Hydrops. This only helps substantiate my theory.
I had the same issue, no nystagmus by the time I got to the clinic.
My BS alarm has gone off again. Would she say this if SHE had these symptoms?
Iāve done some more research, and there is something called āSubjective BPPVā which means that the nystagmus is not present, but the person is having BPPV-like symptoms.
Many doctors in the past argue that just as many people who donāt have spinning or dizziness have loose otoliths in their semi-circular canal so why is it that only some experience intense vertigo or smaller dizzy fits?
Then, there is the argument of the Epley Maneuver not moving otoliths at all. The question begs, however, why does the Epley work on so many people:
- Habituation. The brain gets used to the signals.
- The otoliths move around and āshake things up.ā
- or like you say, some fluid exists.
A study in patients with subjective BPPV has patients perform the dix-hallpike (not the Epley) on both ears 20 x per days for 4-5 seconds. Almost 95% of patients were symptom-free even at the 6 months follow up. They believe, in these people, the otoliths fall from the utricle macular and inside the utriculopetal and stay there and only move slightly when the person is in an upright position (like me, since my positional stuff never happens when I am laying down) and then when the person makes a sudden movement or turn of the head, these otoliths touch the nerve endings. But, its never enough to cause nystagmus.
This is interesting because originally, perhaps, I did have some otoliths moving into the canal and now when I lean back, I donāt spin because there simply isnāt enough to cause nystagmus or spinning.
And perhaps, even another theory is that when one is tired/stressed the body becomes hypersensitive. Therefore, the nerve endings in the inner ear become extremely hypersensitive to the otoliths and cause dizziness. Which would explain by 80% of people who get idiopathic BPPV were under a lot of stress before it occurred or suffer from pre-existing anxiety conditions. I could also see how dehydration can play a part in the otoliths not breaking down.
For me, they say I donāt have a perilymph fistula. I have no hearing loss and no true spinning vertigo and no other symptoms. They have done so many pressure tests on me.
I had no hearing loss after I got mine. It was only when my āMAVā phase started that I got hearing loss. So yeah, you can have a fistula without hearing loss (there are loads of documented cases of vestibular only effects). I still canāt work out how its caused a hearing loss with a delay of 5 months at least - possibly the effect of the blood coating the small bones of the ear reducing sensitivity? My eustachian tube gets stuck every few days. It didnāt do that for the first 5 months. Maybe because there is now blood in the fluid getting into the middle ear due to it being close to healing whereas before it was just a trickle of pure perilymph. Oh and btw I had no spinning vertigo or positional vertigo at all during those 5 months after I had got the fistula. Itās a weird thing.
But sure, still a mystery what you are suffering with. What Iām imagining is a subtle level of additional pressure, only enough to cause a mild leak and a movement of fluid, not an explosion! 
Has your hearing loss got better? I started out with the vertigo and now it just takes the form of smaller dizzy jolts and an off-balance feeling. I also have light sensitivity and at times my eyes feel jumpy.
Sometimes, my ears do feel full but I also grind my teeth.
Yes. Slightly but not that it shows on a PTA. I went through a year or more of having very bad vibration and distortion of loud sounds. My bad ear would almost rattle on the tube. I would also get a weird feeling of pressure in my bad ear in the car. This has all now abated. So definitely yes, hearing has improved but not that it shows on a hearing test YET. But Iām actually hopeful given the obvious subjective improvement. Luckily my hearing is still well above the level that would require a hearing aid. Even my bad ear. Just the tinnitus that is very annoying at times!
Video record at home and take it to the doc, Just change your head positions and it will come. Remember to record both eyes at the same time and always look forward, almost stare into the camera with eyes wide open. After recording play back in zoom mode and you can see if your eyes rotate or jump. Good Luck!
Could be pppd
Yes indeed.
Whatever the aetiology of that is! So far this just seems like another definition for a very similar constellation of symptoms? Whatās the distinction? Does it describe a disease process? Coined by clinicians or lab scientists?
Allow me:
https://pn.bmj.com/content/early/2018/01/11/practneurol-2017-001817
Hello Lyndsay and welcome to the forum.
Yes, I have not suffered from āBPPV-likeā symptoms for ā¦ years now? At no point did traditional treatment work. I wasnāt even taking any medication when the symptom simply resolved spontaneously.
My full journal is linked via my User Card you can get to via clicking my avatar.
I stand by my, perhaps controversial, comments above.