Can i ask what meds you take for the MAV element. Its great you can feel symptom free.
I didn’t realise they would be triggers for MD, how do you tell the difference between them both. What was your onset of MD symptoms if you don’t mind me asking.
I’ve never suffered vertigo to be honest it’s always been just dizziness and I randomly woke up with the dizziness one morning.
I have to say that I really agree with you turnitaround AND I believe we have similar profiles. I have been diagnosed with secondary hydrops (as well as Menieres, which has been discounted) and always MAV has been mentioned. My first event seemed very connected to one ear problem (after a virus) and now I’ve got some ETD it seems (going for an audiogram tomorrow.) I have mild hearing loss in one ear (low frequency, so men only!)
I think in the end I think I’m just a migraineuse with some vestibular idiopathy which results in MAV.
One doctor said “vestibar idiopathy with unknown etiology” which = your vestibular system is slightly fucked up so you get dizzy but don’t ask us why, just treat the symptoms until you can walk again, and maybe more!
I’m having an off summer but can manage.
Thank goodness for this forum!!! You all have been my REAL doctors. I get my best info here and then take my suggestions to my MDs who agree to “give this a try.”
So thanks again!!!
My Meniere’s started with a feeling of fullness in my one ear, then came the tinnitus and some on again/off again hearing loss and a few bouts of vertigo that required ER visits for iv meds to stop the vomiting. I was properly diagnosed at a teaching hospital with Meniere’s. It faded away and then returned several years later with a vengeance with resulted in profound deafness in one ear. My triggers are stress, fatigue, caffeine and sodium. I take a diuretic daily to control excess fluid in my ear and for a period of time had tubes in my ear that were unsuccessful in treating eustatian tube issues. I now wear a bone anchored headed device (BAHA) to help with hearing and the stress/fatigue of being partially deaf. My migraine issues became apparent when I started to have vertigo in the dairy aisle of a grocery store that was being remodeled. The temporary fluorescent lights were a huge trigger and now most fluorescent lights are an issue. I have tried a variety of meds over the past few years, but the side effects have affected my quality of life. Propanolol has been very effective for me and the side effects are benign. Recent sleep issues are making us question if Propanalol is the cause so we are trying a temporary change to Namenda. I should be totally on Namenda in about two weeks and hopefully will get some answers. During this titration of meds I had two very brief incidents of vertigo which made me realize that it is still there, but controlled by meds and diet. There were no docs in my area that had much experience with either of my issues, so I reached out to an excellent teaching hospital/medical school in a nearby city. I have also done on and off sessions of vestibular physical therapy to help work on maintaining my balance. Hope this info helps!
How long did the on and off hearing loss last? Minutes or days etc? Thank you for replying
Also like VM did you ever suffer the constant rocking sensation like chronic dizziness in the beginning with your MD. x
When I say fullness, I explain it as going up in an airplane that… that full feeling… and then my ears will feel like they’re hissing sometimes (cooling sensation as if there’s a relief valve in my ear)… or the leaking feeling as if water is dripping out of my ear but isn’t actually visible at all.
It’s been happening much less lately for the leaking, since slowly compensating, however a nice abrupt weather storm caused a little leak while at work today for a quick 2 seconds.
Anywho, I’m one of the people who feels the leaking / full sensation.
Both you and your doctor should be aware of a condition called perilymphatic fistula (or perilymph fistula, or simply PLF). Its symptoms can mimic those of Ménière’s disease, and there are many studies that delve into the confusion that still persists when it comes to differentiating these two afflictions. For example, see Perilymphatic Fistula and Meniere’s Disease, a Clinical Series and Literature Review by Dr. Dennis C. Fitzgerald, 2001.
Ménière’s disease would not account for the sensation that you describe of fluid in your Eustachian tubes. Perilymphatic fistula most definitely would. If a doctor says, “a perilymph leak would be imperceptible,” then refer that doctor to Devèze et al.'s Diagnosis and Treatment of Perilymphatic Fistula (2018). It is absolutely one of the clinical findings consistent with PLF. Furthermore, perilymph in the middle ear will elicit an inflammatory reaction; mucosal edema and oxygen absorption will lead to episodic Eustachian tube problems.
Dr. Tim Hain’s page “Perilymph Fistula” is a great resource.
In terms of treatment, there’s a major way (surgical repair), a minor way (sort-of-surgical repair), and a conservative way.
The major way involves tympanotomy and going in there to surgically graft. This way has seen a fair bit of postoperative fistula recurrence. Select surgeons with theories about what needs to be done in the middle ear have done window “reinforcement” procedures during tympanotomy. Grafting techniques vary.
The minor way was first described by doctors Djalilian & Garg (in 2009), where they explained the use of intratympanic autologous blood patching to treat the fistula. One doctor, Florida-based Dr. Paul Kevin Foster, had done a study back in 2002 on experimental perilymphatic fistula in guinea pigs, which is perhaps what inspired him to take a leaf out of the book of Djalilian & Garg; Dr. Paul Kevin Foster treated ~12 patients of his with this very minor blood patching procedure (squirting some of your own blood behind your eardrum to form a veritable scab). This saw great results in the vast majority of his patients, as he reported in his 2016 publication. You may be wondering, “Why can’t the middle ear form a scab on its own?” It’s because the blood supply inside there is rather sparse (see Dr. Daniel Lee’s video on the fundamentals of endoscopic ear surgery @ 9m55s if you’d like).
The conservative way may very well work too. Though it’s difficult to know for sure, most people are thought to heal on their own within 6 months. Of course, YMMV. It all depends on how well you can follow the precautions that Dr. Hain indicates on his webpage. Others have far more stringent precautions (see Dr. Aaron DeShaw, Esq.'s webpage on PLF). When it comes down to it, everyone’s genes are different; some people can’t rebuild tissue as easily as others can.
The last thing I’ll mention is that objective clinical signs for PLF are sometimes quite hard to come by. Simple “fistula tests” involving the doctor pressing his or her thumbs against your ears (while looking for eye movements) generally won’t be sensitive for the type of PLF where there’s a tear in the thin little membranes/ligaments separating the inner ear from middle ear. Such a “fistula test” is far more reliable when it comes to situations where there are fistulae (dehiscences) in the bone encapsulating the inner ear, therefore leading to inner ear fluid pressure changes preferentially stimulating sensors that detect rotational movement. You may get a doctor who thinks that, if you have a fistula of any sort, that jumpy eyes is what would be seen with tragal compression (see “Fistula Test” by user “yasir habib” on YouTube).
But - 'tis not the case (source: Dr. Thomas Brandt’s 2003 textbook, Vertigo: Its Multisensory Syndromes).
Unlike other countries, PLF has been one of the main targets for otology research in Japan. The cochlin-tomoprotein (CTP) test is currently being reviewed for Japanese FDA approval, and may become available worldwide in several years as a useful adjunct to diagnosis. Ikezono et al. have worked hard to make this a reality. Until then, we wait. Hopefully you have a medical professional who will consider what I’ve shared here!
I’m not a doctor, but this information comes straight from many of them; none of it was sheer speculation on my part. Feel free to ask any questions you may have. Can’t guarantee that I’d be able to answer them, but I’ll try my best.
Yes we’ve touched on PLF on the forum a few times.
Yes, fluid in middle ear/eustachian tube is a key sign those sufferers do not simply have a migraine!! (!!)
The extent to which PLF is a permanent fistula and the extent to which is won’t heal itself is contentious, though? I also think the lesion is vastly over-simplified!
It’s very possible Secondary Hydrops may be driving a PLF, without which it would quickly heal. The resolution of PLF may be as much about resolution of Hydrops as it is about a small physical lesion healing. The fact that most patients that have PLF describe tinnitus to me suggests pressure within the inner ear and that suggests hydrops. Obviously the PLF may have been(but not necessarily) the beginning (e.g. via injury) and that upset may go on to form inner ear Hydrops. One can imagine that a PLF might form simply from inner ear pressure? (contentious).
I propose the reason why surgery fails so often is that it fails to address the Hydrops which has formed as a result of the initial lesion.
This touches on an important general point about oto-neurology. I believe far too many people looking at this subject fail to respect the fine balance all the interconnected systems remain in until something traumatic happens and a lot of interconnected processes get knocked out, ultimately leading to migraine. It’s one of the reasons I believe that Secondary Hydrops could be a key aetiology of MAV.
I can tell you from personal experience that the Hydrops can improve significantly. My hearing symptoms have improved to some extent. My ear leaks much less and less often now, but it has taken years.
Interesting, but of course the Perilymph that leaks is NOT blood and has no means of supporting or enhancing a scab, unlike a blood vessel which leaks blood!
My doctor and I believe my ‘PLF’ may have mostly healed within weeks, but leaves my ear Hydropic. This probably goes on to reopen the wound or find a way of releasing pressure itself somewhere else periodically (for me this was every night for 3 years)
I am still suffering after 3.5 years (although my balance has returned thank goodness!)
See some other PLF threads here:
Great attention to detail…Hi Thomas, mind if i ask what is your diagnosis and what kind of treatment are you pursuing ?
The hearing loss started when I woke up in the morning and would begin to improve throughout the day. And then one day it didn’t.
My migraine vertigo was a feeling of pitching forward and things began to whirl like a slot machine. The Meniere’s vertigo is much different - it is a circular spinning than can best be described as sitting on the spinning teacups at Disneyland after drinking WAY too much alcohol.
Meniere’s, oh man that’s tough, sorry to hear.
What has made you feel these two symptoms have such different origins?
Recent Advances In The Treatment OF Perilymph Fistula
In a recently published study performed by Dr. Djalilian at UC Irvine, patients with recent onset perilymph fistulas were treated with an injection of blood in the middle ear (space behind the ear drum). All patients experienced improvement of symptoms. In some patients a repeated injection had to be performed
Hi. Sorry know nothing of your diagnosis but assume Menieres and MAV maybe. How very clever to be able to attribute your two types of dizziness to your two conditions. Pls can I ask how you managed it. I struggle to identify triggers. They can give delayed reaction, be cumulative, food and/or environmental and our thresholds of tolerance apparently varies day to day. Too many variables for me. I give up!
The neuro-otologist who diagnosed me insisted on further investigation (MRI) because he established I had three different types of dizziness which appeared to lead him to believe I might have had three different conditions/affected areas? Who knows. In his final report he said ‘I thought her vertigo was predominantly peripheral but in view of its severity and variety I am pleased the scan reassures us that there is no significant brain abnormality’. Which I thought interesting. Helen
I never thought I had two different issues. I was diagnosed with both by an otolaryngologist and neurologist at UCSF after numerous tests.
I kept a journal of my vertigo attacks and was able to isolate the triggers. Trigger avoidance + meds have kept the vertigo under control
That’s great news. Long may it continue!
Any specific triggers?
Thanks! Appreciate your reply.
Excessive pressure in the inner ear can certainly cause fistulae. Dr. Victor Goodhill (in the early 70s) was the thought leader in this; if the pressure is excessive in the inner ear (causing inner ear hydrops), the annular oval window ligament or the round window ligament can rupture. It can be many things – excessive CSF pressure through the cochlear aqueduct leading to perilymphatic hydrops (or perilymphatic “hypertension” as is reported more frequently in the literature). It can be endolymphatic hydrops. It can be inner ear purulence (i.e purulent labyrinthitis). It apparently can even be hydro hydrops (water hydrops). See Brown’s 2014 publication, where he writes, “Recent studies have demonstrated that an immune challenge to the inner ear can permit more water to exit the blood into the inner ear (Hirose et al., 2014).”
Referring to the middle ear blood supply that hasn’t evolved to provide a blood patch (scab) in the way our skin has. Also, with respect to collagen healing (collagen is the material that makes up the oval & rounds window ligaments), it’s different in the ear from what I’ve read:
Healing of the inner ear membrane occurs one cell at a time. If it is re-ruptured by new trauma you start over again. Once it heals over at one cell thin, the connective tissue starts to move in. This is vastly different from other parts of the body where collagen comes in early after an injury. This means that collagen fibers do not lay down for approximately eight weeks of uninterrupted healing. Once the connective tissue starts to lay down, it does not fully rehab for 12-18 months. The minute movements constantly made by the malleus, incus and stapes provide the “cross fiber friction” to properly rehab this very small and fragile membrane.
From Dr. Aaron DeShaw, Esq.
Additionally from him:
What few people know, or consider, is that the inner ear is connected to the subarachnoid space by the cochlear aqueduct. If the round window or oval window of the inner ear is perforated due to trauma, then perilymph escapes, driven by the hydrostatic pressure of CSF. The escaping perilymph and endolymph is replaced by CSF entering the cochlea through the cochlear aqueduct. In this condition a longitudinal flow will exist between the cochlear aqueduct and the site of the perforation. The chemical composition of perilymph will be disturbed because the perilymph will continually be “washed out” and replaced by CSF. This condition is what is technically known as a perilymphatic fistula. This will also result in lower than normal CSF fluid levels in the brain and spinal cord. The most common repercussion of this is a low grade headache, but it can certainly become more serious than this.
From what I understand, there is no inner ear pressure relief mechanism that was “intended” by evolution other than (perhaps) the cochlear aqueduct. Włodyka’s paper in 1978 notes, “In the absence of patency (openness), the accumulation of harmful products of metabolism in the perilymph has a deleterious effect on the sensory elements of the inner ear.”
It seems like PLF could get confused with MAV + hydrops. If you’re actually feeling leaking fluid, it suggests something’s not right.
Thanks for the compliment. I can’t share, sorry!
If you’d like, feel free to ask questions about ear anatomy and extant literature, and I can direct you toward certain studies published by doctors. I can’t offer any medical opinions or advice, obviously, as I am not a doctor.
It doesn’t say exactly which study this is, but I presume it’s the 2009 study “Intratympanic injection of autologous blood for traumatic perilymphatic fistulas” by Djalilian & Garg.
Dr. Paul Kevin Foster did the same procedure on ~ 12 patients, with great results, as published in his 2016 study “Autologous Intratympanic blood patch for presumed perilymphatic fistulae”.