Perilymph Fistula? - really in a bad place

Hi. I’ve been reading your threads looking for some answers and I’m sort of at the end of what I can figure out myself. In August I had a ear equalizing problem on a little prop plane (the most recent of many many possibilities for this injury) and I have been experiencing ‘rocking vertigo’ or the feeling like being on a boat ever since. It started out annoying but manageable but it’s gotten a lot worse. My fault for doing it, but we thought it was ETD and I tried to clear my ears with valsulva which backfired in a big way and made the rocking and pulling/pushing pressure many times worse. I did the VNG battery of tests earlier this week and that seemed to just get it all inflamed (?) or irritated and the rocking vertigo is making me crazy. I’ve gone from doing yoga a few weeks ago to being stuck in a bed, unable to walk without holding on to the walls. It feels like I’m being pushed backwards and moving around almost on a conveyor belt. Or like an extra bumpy Peter Pan ride at Disneyland but in reverse. Has anyone else experienced this? For me it’s like constant vertical and lateral movement. And it’s driving me out of my mind,

So another thing, when the Dr. doing the testing said he suspects Perilypthatic Fistula my ENT dropped me as a patient because it’s beyond his scope. I was being prescribed steroids but the ENT wouldn’t tell me if I should start taking them again (I stopped them leading up the VNG) I have an appointment with a specialist at UCI in a bit more than a month but I can’t make it until then without a way to cope. This is completely debilitating, I have no medication or instructions to keep it from getting worse and I feel scared and alone. I can hardly eat and I know I’m not drinking enough water.

Today is my birthday (I know, :partying_face::sob:) and I’ve spent it in bed trying to block out the smallest sound that are making me want to scream. It sounds crazy but I think my neighbors are running a fan (not a connected house) and it’s driving me up the wall. This is not normal and I don’t know what I can do. The sound thing started in earnest at the balance testing place. They put these glasses on me that had some sort of buzzing motor next to my ear and my ear has been incredibly sensitive to sounds and any vibrations since. It’s painful and will not stop.

I haven’t found any stories on line that sound like mine, and it makes me feel like I’m losing my mind frankly. I just want this to stop! I have a busy job I love and a family I’m completely isolating myself from. I can’t take much more of this. Any advice on how to cope is very welcome.

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Hi @beeliret,

So sorry my love, this is a pretty dreadful injury to experience and deal with.

Actually, there are a few relevant posts on here in relation to “Perilymph Fistula”.

However, please bear in mind that your issues might no longer be to do with such an injury and be due to the aftermath of minor physical trauma, possibly even Secondary Hydrops. There may also be issues caused by neurological feedback loops as the brain tries to recalibrate which itself can cause instability to perception. Add on the stress and anxiety of it all which pours petrol on a fire.

Know this: it will settle down and get better, never forget that!

It’s very hard to diagnose and please don’t self diagnose.

In any case the modern treatment for PLF is often to wait it out and treat the symptoms.

Some doctors don’t believe they even exist and symptoms are explained by trauma induced Hydrops instead.

It’s tempting to consider a quick surgical solution but imho that’s not the best long term fix. It’s almost certainly better to let things settle down by themselves and treat the symptoms in the mean time.

I believe the surgical solutions are very controversial as there is rarely proof there was ever a leak.

My story is quite relevant: https://mvertigo.org/t/my-journey-to-hell-and-almost-back/12548?u=turnitaround

Also read this TO THE END: I've had it guys ... I'm going to look into Perilymph Fistula (PLF) surgery

You might also however read Tina’s successful story: Secondary Hydrops, PLF and my 3rd PLF Repair - #30 by dizzylife

And also this one: Another perspective, but so close to the 'MAV' experience (PLF/Hydrops?)

But be wary, not all such procedures go well: Finally got my diagnosis... NOT MAV! PLF - #21 by D75

So consider the significant risk (especially to your hearing) of doing this procedure and unfortunately you may have to put up with significant symptoms for a good while (possibly even a few years) whilst you take some medication to prevent migraines and reduce the dizziness and impacts to vision.

The long-term prognosis is usually very good, but you have to deal with the rubbish in the meantime, and it is rubbish!

Thanks for your response it was very kind. This is tough stuff, and very uncomfortable. It’s comforting to not feel alone or like I’m going crazy. (ok, I still feel a little like I’m going crazy)

Just to be clear, I am definitely not self-diagnosing, and I don’t even care what this is as long as someone with an MD after their name will do something about it. The ENT who dropped me said he thought it was secondary hydrops (and it might be) but hearing the AUD say perilymph fistula was enough for him to just drop my case. We don’t even have the report for testing yet so why he’d drop me over just one opinion seems extreme. I don’t have a dog in what seems to be a contentious ENT fight that has nothing to do with me personally. From my perspective, both of those two diagnosis sound the same by symptoms and I obviously don’t have the skill to tell them apart. And there’s no law that says it can’t be both or something else entirely.

The doctor at UCI, who I haven’t seen yet but is following my case, will likely do a ‘blood patch’ injection according to his office, assuming he agrees with whatever the AUD says and what the tests show.

I am upset that the testing seems to have made everything worse. It’s been 4 days and I am so much worse off than I was before the VNG + all the other tests I forget the names. But I was spun around in electronic chairs and strapped into devices that move 360 that look like they belong at NASA. I knew it wouldn’t be enjoyable but I didn’t think I’d still be reeling days later. I’m just praying it calms down back to what it was at the very least.

What’s hardest right now is that I am in limbo with nothing for nausea and the constant rocking and movement is just getting to me. My long-time primary care I’ve seen for various things over nearly 15 years asked me to come into his office Monday so we can try and get me patched up until my UCI appointment. My question for anyone reading is there anything I should NOT do or take? This doc is kind but has no idea about any of this ear stuff. This is purely about making sure I can function for the next several weeks.

What does everyone here take for nausea? Anything I should ask about?
Is there anything that can stop the rocking vertigo, even if just temporarily?
Have you been prescribed steroids? Do they do help?
Anything else I should ask my PCP for?

Does anyone else has the sensation of moving, almost like on a conveyor belt? I haven’t found this described anywhere, but maybe the way I think of it /describe it is different from the way someone else might. For example when I had my CT scan and lay down on the bed of the machine that rolls you back a couple of feet into position. For me, it felt like I kept moving backward the entire time of the test, like another imaginary 100 ft. I haven’t been able to find anyone else describe this feeling. Sometimes there is a feeling of acceleration where it can feel as if I’m moving quite fast, although of course, I am perfectly still.

Right now as I type this, I’m sitting in a non-rocking lounge chair and it feels like I tip forward and then tip backward, like on a swing. When backward it feels as I’m being pushed to the right. Sometimes the feeling of being pushed backwards is hard as if gravity itself is off by a number of degrees and I have to fight against it to stay upright. When I’m laying down this feels like the bed is tilting down and I have to prop myself up on pillows to stay horizontal. It’s just bizarre and very uncomfortable.

For me this is 24/7 since the middle of August and it’s wearing me down. My symptoms are right ear fullness/pain, constant 24/7 motion/vertigo/rocking that is not dependent on position but some positions like bending forward make it more intense, sometimes it feels like liquid is in my ear and draining down my throat, my right ear is constantly ringing, my eustation tube on the right keeps creating a ‘sucking’ sensation which is hard to explain. I don’t have much of a headache unless it’s all worked up at it’s most intense but I think might be mostly dehydration. And then there’s like super sensitive hearing for anything that’s buzzing or rhythmic. Like a fan, a car engine, or the fridge. All of those noises can be excruciating.

I am not prepared or in the headspace to consider this might last years. I have work to do and travel I need to do. I’d honestly rather kill the vestibular system in my right ear completely, even if that means losing my hearing than deal with this for years. Obviously, not a choice I want to make or that I think anyone should agree with. But I have too much going on (things that I love!) to be stopped in my tracks like this.

Abolutely, but wait til someone tells you you have migraine :man_facepalming: (despite in my case obvious trauma however minor).

It was at that point a dog joined me.

Sure, and on top of that they match some people’s opinion of “ETD” and whilst we’re at it “migraine” (which should be strictly called MAV to avoid claiming definitive pathophysiology).

Both might be sorted out by low dose Amitriptyline. Can eliminate nausea and the rocking because its an extremely effective vestibular suppressant. You’d be surprised.

Until I took Ami I was seeing floors slant and the canal I was walking beside rock left and right.

I suggest you trial that asap (whilst discussing it with an oto-neurologist first).

That would be really really stupid and totally unnecessary, you just have to wait for a while for everything to calm down, that’s it.

The brain, if given the time is extremely good at compensating, so long as you don’t fill your body with too many drugs (which can inhibit compensation).

Losing one ear will almost certainly mean symptoms for the rest of your life and hearing loss is extremely harrowing to deal with.

Well, ya. That was more of a hyperbolic statement than anything else. But I would rather live without my right ear than live with how it is now as a status quo. I know it will calm down eventually.

I will ask about it when I see my PCP on Monday. I worry about taking vascular depresenants in general because I don’t want to cause any long term damage which I read somewhere can happen.

Ya, I’ve been down that road. I was in a car accident several years ago and ended up with a bad concussion that took months to heal. In that time my brilliant doctors said I was having migraines and even vestibular migraines. (spoiler: I don’t) I let them give me some pretty nasty drugs (topamax) that screwed me up worse than a concussion or migraine ever could.

I think that car accident is probably at the root of this problem. I think I have some sort of tear or injury in my ear that heals and then is reinjured by activities periodically. For example, traveling overseas a few years back I experienced this weird thing where every time I closed my eyes I felt like the world was tilting and I was falling. I just assumed jet lag and blew it off after my doctor at the time didn’t seem alarmed and eventually it stopped with no treatment.

This time is different because there was a 100% clear ear ‘rupture’ due to pressure while flying and the symptoms that started immediately and have not stopped. And relevantly, it felt too severe for my usual MO of ignoring it and not seeking treatment. I can now sort of connect the dots to times I’ve experienced less severe but definitely vestibular symptoms since that accident so it makes sense to me.

Does that indicate a fistula or hydrops? I have no idea. I just need it fixed.

Vascular?

Vestibular.

No damage that I’m aware of though if taken for a very long time (decades) raises your risk of dementia according to some reports.

But we are talking taking it for 3 years not 25. And probably because it puts your brain to sleep too much.

Right. Vestibular :woman_facepalming: Sorry, I’m a total space cadet today :slight_smile:

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Just curious, how long do you think it would take to go from PLF to that not being the core issue anymore? I’m not clear on what secondary hydrops really are in concrete way. So perilymph leaks into the middle ear creating pressure, and that sounds exactly like what hydrops are as well, an increase in pressure from fluid? I don’t think I understand it very well so if you can explain it to me like I’m a distracted 5 yr old that would be helpful. To me the thing that seems different is that hydrops appear to be episodic, and what I’m experiencing is every second of the day since I was on that little plane. Not sure how meaningful that is though either. The intensity changes but it never goes away.

Who says you have a fistula at all?

Secondary Hydrops is pressure in the inner-ear after trauma or a systemic issue.

Secondary Hydrops is not episodic, it’s constant, with episodes of even worse pressure.

The audiologist who did my initial eval, and the doctor who examined me during the battery of balance tests suspect a perilymph fistula. On monday I’m getting a temporal bone CT to rule out what I suppose to be the other alternative or maybe see the leak. I have no clue. The ENT, who is no longer treating me hypothesized it was secondary endolymph hydrops which as far as I can tell have identical symptoms depending on who you talk to. It’s a bit confusing why there are such strong feelings about PLF. But even my uncle who is an MD has an opinion about PLF. It’s all very strange.

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It is indeed. What you soon realise is that ear medicine is pretty … lacking in advancement.

All I know is … I simply took medication to control the symptoms (to an extent) and over a (long) period of time, I simply got better spontaneously.

I must say it didn’t feel like that for 2 years, because although the symptoms morphed, I didn’t feel like I was getting better … then one day I had a hunch I was … and dropped taking Amitriptyline … and I got much better.

Glad you are feeling better. I’ll hopefully be on the mend soon too.

What I really was curious about is if anyone else’s vertigo or feelings of movement feel like you’re actually traveling forward or backwards. At times I even feel a sensation of acceleration. Most of the time I feel the rocking like I’m on a boat but I also have strong sensations of being pulled, pushed or that I’m moving. Or rather the room I’m in is moving. I haven’t seen much written about it.

This is kind of buried so maybe I’ll start a new thread.

Hello! Firstly, thank you to James @turnitaround for tagging my story in this post. I haven’t been on here for a while as I am now 4 years post my last surgery at UCLH in London with the incredible Prof Saaed and am now symptom free (albeit deaf in right ear with tinnitus in that ear, but for me that was a high price well worth paying).

I haven’t read all of your thread but a lot of the symptoms you describe I had, post a car accident. The car accident part is important. I too had the full on vertigo but also that feeling of being “pushed” from the right side, moving in space etc.

Let me first say, James is spot on - MOST PLFs can heal on their own given enough time AND following the protocol. And yes, in standard PLFs drugs like Amitrip can help you function day to day. James is incredibly knowledgeable about PLFs and he kept me going during my darkest hours with it.

However, what I don’t think I ever went into on here is the fact I had a further type of PLF than just the round and oval windows. And for Doctors out there that don’t think PLFs can be SEEN or aren’t real - they absolutely CAN be seen during surgery, Prof Saeed stopped my last operation to call in his entire surgery team to take a look at the leaks in my ear, and they are therefore a very real injury.

Now back to the additional injury - THAT injury (in the words of Prof Saeed) “can only be caused by something like a car accident”, ie the whiplash. Now, unfortunately I do not remember the technical name for that injury. There are semi circular canals in the inner ear that go upwards, there was a tear in one of these (in addition to the tears in my oval and round Perilymph windows) and it was that tear rather than the windows which were causing most of the problems. In my final op, Prof Saeed patched this too.

He said that this does NOT heal on it’s own as the round and oval windows often do. Surgery would be the only option for this type of injury.

Having said all of that, I came home from that op with a list of things I am unable to do, even four years later. I am unable to bend forwards from the waist, if I need to pick up something from the floor I have to go down on my haunches, I am unable to lift anything heavier than a kettle and no straining. I am unable to raise my heart rate, so exercie is limited to walking (I was a PT before this so that is the hardest compromise for me).

The surgery has left me with a heightened sensitivity to sound (crazy when I’m now deaf in that ear but remember we take in a lot of sound through the conductivity of the bone), noise can physically hurt, like the washing machine on spin, drills etc, so I stay away from those. But mostly good ear plugs, or covering that ear with large old fashioned ear defenders can help. But I do not get vertigo any more, I do not get that nauseous feeling or feeling like I am moving in space, I can get on a plane (although I do scuba breathing on ascent and decending). I am not allowed on the underground (tube, subway) but thats ok. I have been to the theatre and cinema (with ear plug in that ear) and been fine.

I really do empathise, Prof Saeed literally saved my life as I got to the point where I could not vision even a semblance of a life living with the torture that is multiple PLFs. I really do hope you find some relief soon. One thing that helped me temporarily (6 months but that was enough for me to find UCLH in London) was botox injections just above that ear and around it. That was enough to numb the nerve to stop it sending the dizzy signals to the brain. Controversial but worked for me.

However, if they just did all those tests on you (yes I was strapped into the chair, I had hot and cold water poured into that ear whilst they watched my eye movements), it will take a while for the trauma of those to subside.

I sincerely hope you find your relief from it, keep talking to James @turnitaround he is a complete sweetheart and kept me going through 4 dire years AND he really knows his stuff about PLFs!!
Good Luck and Take care
Tx

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Good to hear from you Tina. Glad that you are still going great!

Wow, that’s very interesting. If you can ever recall what that technical term is I’d be very very interested, please try to! Is it written down in your medical notes by any chance?

I had a quite a bad car accident at one point in my past, but it was many years before and I didn’t appear to get a whiplash injury as my car had spun round and the seat back protected my neck at the point of greatest deceleration (hitting the barrier). However, it was quite a spin!

I didn’t have many symptoms as a result of that crash and my serious balance issues only started after attempting to irrigate my ear many years later.

The one thing that I’m wary of though, is that I was also a big fan of indoor rowing. I’ve wondered if that has had an influence.

I note this story too: Olympic sufferer

My hunch is a lot of this is simply fluid imbalance and whilst it can take very little time to happen, due to the nature of the biochemistry, it can take a long time to reverse/subside.

But sometimes it does feel as if something is fundamentally broken …

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ohmygosh this! I was in car accident about 6 or 7 years ago and had a significant concussion and experienced extreme sound sensitivity and some vertigo-esque feelings back then but everything healed for the most part, although I’ve never felt quite the same. My problems since have all been pressure and
often travel related, this instance the ‘pop’ on the inter-island prop plane being the clearest and the worst by a mile. Not sure if I mentioned it in this thread but in Europe last year I had this sensation of tilting/falling whenever I closed my eyes. I wrote it off as jet lag and it stopped happening after a few days of rest. I told the AUD who did the testing during my eval so they have all this information. I think it’s a good hypothesis that whatever this is stems from that car accident and I just keep re-injuring it from time to time. But there’s also things like brain fog and disorientation/ confusion that happens periodically since then that I don’t really like to talk about.

As far as the ‘pushing’ or ‘pulling’ feeling it sometimes feel like my sense of gravity is like a few degrees off and I’m just being pushed or pulled down towards it. It’s very hard to explain but I think you may understand what I mean.

Are you talking about 3rd window syndrome? Or Semicircular canal dehiscence? I think something like that was mentioned by the AUD. There’s also a possibility of a fracture in my temporal bone that’s causing some problems that might be SCD I think. I get that CT scan tomorrow.

I’m super sound sensitive right now, anything buzzing or grinding like an engine is excruciating. But I have noise canceling earbuds and they’re doing an ok job. I think it’s just all the fuss with the testing and maybe it will calm down soon. :pray:

I am going to ask about botox injections tomorrow. I live in southern CA botox is not hard to come by and I think I can shots at my primary care after the CT scan if they’re agreeable. Can you share what your injection sites were? I am so grateful to have this information. I just need to survive until I see the specialist who can operate if warranted. I am very fortunate to live 20 minutes from UCI where they pioneered some of the surgeries for this condition so I’m hoping they’ll be able to bump my appointment up from Nov because that seems like eternity from now, and of course that’s not the date of any potential surgery or procedure.

I am so grateful for your response. You have given me a lot of hope that this can get better :heart::heart::heart: I’m so grateful this forum exists @turnitaround. Thank you from the bottom of my heart. :pray:

One more thing I haven’t brought up, but maybe you (or someone else reading may have some insight) Is the idea of a ‘drop attack’ caused by damage to the otolith organs. Bear with me, it might take me a min to get to the point here:

In early July I had an anaphylaxis reaction and was taken to the hospital via ambulance where they administered a high dose of steroids via IV. I was fine a bit later, and went home with an oral steroid taper. Two days later I’m on the phone with my PCP asking for antibiotics because I feel pressure in my ‘bad’ ear and I thought I had another ear infection (probably the 5th this year, I’ve lost count) I’ve had so many problems with that ear especially since the trip to Italy that I didn’t really think twice about it but suspected that maybe the IV steroids triggered something and made a mental note to eventually see an ENT. A few days after that I fell while standing in the kitchen, no dizziness, no vertigo, no tripping, and no loss of consciousness. I’m a little freaked out, but I get up and start walking towards my bedroom and fall to the ground again, same thing --no dizziness, no tripping. The twist here is that I have a long time neurological sleep disorder that’s suspected, but not confirmed, narcolepsy. So I assume the fall is full-body cataplexy, which has never happened to me before. I let my neurologist and sleep doctor know and make appointments to discuss later. My top priority at that time (mid-July now) is my allergies and trying to figure out what caused the anaphylaxis reaction, which proves difficult because I’m just having allergies seemingly at random at that point. I took more steroids and antibiotics (probably worthless) and a bunch of allergy medication and after a couple weeks my ear is feeling better and my allergies feel more under control so I booked a last minute trip to Hawaii (I needed a break!!!) and left the first week of August. I’m fine on the way there. I chew my gum during take-off and landing stay up on my allergy medication and everything is fine and I have a wonderful time. Then on the way back my allergies kicked up as we left the resort on the interisland prop plane to fly to Maul. And I’ve already covered in detail what happened on that flight and I haven’t had a minute without rocking vertigo since. The return flight to CA was a nightmare and probably compounded all of it.

So the question here is: I read that damage to your otolithic organs can cause ‘drop attacks’ which is basically indistinguishable from cataplexy (which only happens in narcolepsy, which I can’t rule out) It stretches credulity to think that I developed cataplexy 30 years into a neuro sleep disorder AND started having massive inner ear symptoms at the same time. The otolithic organs are what are responsible for sensing gravity and motion which are the exact things I’ve struggling during my ‘non spinning’ vertigo so I’m starting to think it wasn’t cataplexy after all – and maybe even some of the neuro type symptoms I’ve assumed were part of my sleep disorder have to do with my inner ear instead. What do you guys think? Any thoughts?

I’m looking for information on what the impact of high dose steroids is on the inner ear (I think it was IV solumedrol, then oral prednisone and methylprednisolone) and if there’s a mechanism that might have set this in motion. (I did not review this with the AUD doing the testing, because I didn’t make the connection until later, but I’ll be sure to bring it up at our follow up)

This whole situation has turned my world upside down for the moment, but I am hopeful that I’ll get some answers and get a quality of life boost once I get this treated.

Thanks for reading if you made it this far!!

I have had all kinds of very strange episodes of all kinds … and don’t get them anymore. For some reason it stabilised in some way and so I would guard against talking about ‘damage’. It just might be fluctuation in pressure, slightly changing the shape of and pressure against the otolith sensors, causing temporary reversible decompensation. The difference between the response of the healthy ear versus the one with unusual pressure will make you feel motion sick as well as give you hallucinations of motion, force, etc. Once the brain catches up with any changes, the vestibular symptoms go away.

I totally agree. What I need to determine is if it was in fact cataplexy, or an otolith crisis or whatever they called it. Neither have any dizziness of motion feelings associated with the falls, which seems odd for otolith. It’s the difference between me resuming driving or not, which I haven’t since the assumed cataplexy episode in July. There are also medication changes and concerns that are way off the scope for this board. If anyone knows anything or can point to studies about steroids and the inner ear it will be helpful to know. Sadly there are no case studies I can find regarding inner ear problems and the narcoleptic brain.

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The inner ear is so tiny and sensitive (and especially so when there is heightened pressure therein) that I strongly suspect it tends to magnify tiny local issues.

I also believe that once in such a state of heightened pressure it will be more sensitive to interference from outside forces like changes in blood pressure, blood chemistry and on top of that all the learned sympathetic responses from the bodies fluctuations and movements will have changed and need to be relearned.

It’s a complex old thing.

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indeed it is!

Blimey James, that car accident must have been very scary! And my osteopath (also a friend, we met when she had a practice at my gyms many moons ago) says that we may not even notice damage at the time, due to adrenaline etc, so when we then get a back ache 5-10 years later, we likely don’t even link it to the original injury.

It could have been that the whiplash weakened the window(s) that your irrigation attempt then just finished the job for? Or it may have been the rowing - straining can cause PLFs as you know, so maybe pulling hard against oars may have caused a weakness too? Maybe you will never fully know :frowning: :thinking:

I cannot remember the medical term for the tear in the half moon bits (technical term lol) that sit above the ear. If they are on my notes, I’ve got zero chance of getting hold of them as my GP practice is practically uncontactable since covid.

I agree totally with balance and imbalance - both in the terms you refer to about it being a fuild system and also whole body. I’m about to reply to the rest of this thread, so will put it in there but healing can take time and our world (despite it’s technical advances in medicine), isn’t set up for the whole person healing and rehabilitation time it can take for the body and psyche together to really find balance again.

At the end of the day, something IS broken, you have a healed over Fistula, I have repaired ones but that still leaves them not as strong as they were BEFORE this, so therefore a little more open to stressors (physical and mental). They are more vulnerable than they were before and so we learn to accommodate that and allow for it. Giving ourselves space and permission to do that is important too.
Take care
Tx