Perilymph Fistula? MAV? Stress/Anxiety? Looking for opinons

[thenukes]

Greetings all,

I’m pre-doctor consult on this (though I have some medical connections in my life who have weighed in.)

I’m trying to sort out some fairly strong symptoms I’ve had for about 6 weeks and hoped you all could imput.

Quickly, here’s what I have:

-Off-balance feelings - wobbly at times when walking (But not to point of falling etc)
-Some dizziness
-Ear ringing (this is not new, had some level of this for years and honestly not a primary concern or issue)
-A few medium/mild headaches (I can also get these from time to time then they go)
-Feel some weakness in legs
-Head feels a little “full” or swollen senesation
-Eyes feel kind of heavy and slow
-Anxiety is ramped up - I’ve mostly overcome a stress/anxiety disorder but these symptoms have fueled the condition back into making an appearance.
-Some brain fog, blurry vision at times - then other times it’s fine.
-At times, maybe a litlte light sensitivity - other times fine
*Primarily the biggest thing is the boaty head, balance thing. Can be worse when looking down at a screen for example, or if I look up for a while, then look down. (positional)

Here’s what I DON’T have:

-No true Vertigo
-Never felt any “pop,” leakage or any real ear sensations.
-No contact injury
-No real issues in either ear aside from the ringing which is a bit more pronounced but has been there.
-No speech issues
-Memory is pretty much fine
-No odditiees like being able to hear my eyes move, no noises in ears
-No pain in either ear
-No fullness feelings in ears (or very little… more a full head feeling at times)
-No apparent sensitivity to pressure etc (Or perhaps very light sensitivity)
-No head pain, outside of maybe 3-4 days of headache in about 40 days

How did this come on?

During a busy time I was working out pretty heavy and did an inclined pull-up (on my back on a machine) and stood up and felt kind of dizzy, like I had kind of overdid it. Felt a little foggy/dizzy that night and it carried over into next day… then continued on for over a month with varying degrees. I’ve had some dizziness in the past with anxiety/stress disorder so I didn’t think much of it. So, looking back it SEEMS like it started that night, that moment. This was the only reason I stumbled upon this idea of Fistula.

Other details:

-The balance and everything else seems a bit better at night. (Though my anxiety behaves this way too.)
-When engaged in activities I can forget about most of it, but it’s there.
-Balance is off, but I can do basic things. Yesterday I was even hitting some tennis balls (gently) to my daughter back and forth on the court.
-I’m able to get to work and function
-Some days it’s just a minor annoyance, some days really hard. (Usually feels related to how my mind is responding to it.)
-I’ve felt the need to try to rest a lot, sleep can sometimes be deep and symtpoms a little stronger right out of sleep, then slowly ease up as I move around.

Had I not felt this come on during a lift, I think I’d chalk this up to another episode of what stress/anxiety can do. (I’ve certainly had symptoms like this in various mixes before - but not so long and consistent.) But, because of how it seemed to relate to that straining, I thought it was worth getting some opinions/input.

I’m not convinced this IS fistula or even anything phsyical for sure. But, my hope is that some of you with experience can recognize some things and comment.

Thanks in advance!

[Manatee]

Hi Bryan,

Our moderator, James (@turnitaround) has a lot of theories about fistulas and “leaks” and has done a ton of reading and research. I’m sure that he’ll comment the next time he’s on the site. (He’s in the UK, where it is 4:00am right now, so give him a few hours.)

Another thing to think about is, when you did that inclined pull-up, could you have injured your neck or a cervical vertebra? Because that is another possibility, I suppose.

Welcome, and we’re glad you’re here (even though we’re not glad that any of us are here) . You’re in the right place!

[thenukes]

Thank you Manatee!

Look forward to hearing James’ thoughts.

To your question, it’s possilbe I could have done something to my neck… but I’ve felt no pain or any abnormalities at all there.

Really the persisting symptom is this motion-sickness like thick, heavy head… with some motion sensitivity and occasional positional dizziness. (But not vertigo or intense kind… the lower level, car-sick type)
Occasionally bouts of exhaustion… some ringing in ears but again that’s been on and off for years.

Again, I think I’d write this down to anxiety sypmtoms if I hadn’t had this happen during an event/strain and start so suddenly and last so long.

Thanks again for your input and being welcoming. I have in the past also had some migraine issues including aural migraine. (Sporadic) So, hopefully I can contribute and help as well.

[GetBetter]

You can see a neuro-otologist. They do something called a “pressure test” where they force air using a small blow pump into your ear and watch your ear drum simultaneously to see if the pressure makes it bend. They see if this procedure makes you dizzy. This is a standard test for fistula.

Depending on the outcome they can recommend a VEMP exam or VNG test as well.

Do you feel dizzy bending down below your waist or going on haunches. These could point to a fistula as well.

Also when you cough or eat do you feel dizzy ?

BTW when did the tinnitus start ? This is also a key datapoint.

Rapid standing up can also make you dizzy. Kind of like POTS. So it need not necessarily mean you have a fistula. But weight training has been known to be one of the popular causes of PLF.

Do not get anxious. 90% of all fistula heal naturally as long as you dont do anything dramatic to make it worse. (courtesy:Dr.Hain).

Something for your bed time reading

Perilymph Fistula

[thenukes]

@GetBetter

Do you feel dizzy bending down below your waist or going on haunches. These could point to a fistula as well.

Looking up for a while, or looking down (at a phone etc) while my head is still up can cause some car-sick/unsteady feel.

Bending over can produce a little light headedness… though it seems to depend on how my head is feeling too. (Headache or no?)

A lot of it feels “sensory” if that makes sense. (More than mechanical)

If you’ve ever been on a boat and just got midly sick feeling because of the motion, but didn’t even realize you were moving… that kind of thing.

@GetBetter

Also when you cough or eat do you feel dizzy ?

Not really. Sometimes the woozy feel can put me off of food for a bit. But when it’s more neutral I can eat and no response to food. Coughing or sneezing generally not a big reaction to it, though sometimes a sneeze can produce a bit more lightheadedness.

@GetBetter

BTW when did the tinnitus start ? This is also a key datapoint.

I’ve had it for years. I don’t remember not having it. It’s felt louder since… but it can also go up in concert with high stress times. (If I’m having an anxiety stretch with panic, etc.) And did it start directly that night when I lifted or a few days in? I can’t say with 100% certainty.

@GetBetter

Rapid standing up can also make you dizzy. Kind of like POTS. So it need not necessarily mean you have a fistula. But weight training has been known to be one of the popular causes of PLF.

Do not get anxious. 90% of all fistula heal naturally as long as you dont do anything dramatic to make it worse. (courtesy:Dr.Hain).

I have lower blood pressure so I can get a little dizzy standing up quickly like you said. However, this felt strong… and has been fairly constant.

Agree, I’ve read that strain can be a cause and I was bearing down - strenuous lifting during this exercise.
(More so than usual) However, I also in some ways seem to be missing some of the key elements I seem to read about with the PLF.

(I’m scheduling an ENT visit first, then more after if need be… so this of course wont’ be a substitute for medical care… just gathering opinions.)

I really apprecaite your input, particularly that if it is indeed PLF… my situation isn’t dire. I admit, it’s been getting to me finally after it being 6 weeks or so.

Thanks again.

[GetBetter]

Do see the ENT, but if you find you need a second opinion talk to a neuro-otologist. FWIW as a conservative measure sleep with two pillows. If it does not help then go back to normal.

If you ever get a MAV/VM diagnosis there are meds which you can trial and see if it fixes the bobble/heavy head and other vestibular symptoms that you are experiencing.

[thenukes]

I use two pillows already, GetBetter. But I may add one more for good measure.

I’m guessing (not positive) that I’d need a referral to a neuro-otologist, but that does seem like the most diredt route to good information. My feeling is that an ENT is probably going to rush me out of there aftter a few general questions, but I’ll try to keep an open mind.

Appreciate the additional input, very much.

[GetBetter]

MAV/VM can be exacerbated by stress. But stress alone cannot cause this and the symptoms are very real and not due to anxiety.

It is the other way around diziness causes the anxiety.

Aetiology for MAV is not laid down and hence everyone speculates as to its underpinnings.

[turnitaround]

Welcome to the board!

My 10 cents:

• PLF is a contentious diagnosis - and in any case they probably heal themselves
• The real culprit could be you developed some Secondary Hydrops from the workout trauma
• Surgery can’t fix that - its a fluid imbalance in your inner ear … only time and metabolism will fix it
• This presents just like MAV (and imho they are the same thing, just that MAV can be caused by other things - that part is my contentious opinion)
• The only decent protocol in town for chronic dizziness is the MAV protocol, follow that to see if you improve
• I would absolutely give up all weight training and heavy physical work and see if that helps with symptoms - if its does that points to Hydrops imho. Ceasing these things may also speed up recovery.
• Over time (a looooong time potentially, unfortunately), you should notice subtle improvements and changes to symptoms. My ‘MAV’ is trauma related and I used not to be able to go on haunches without big issues, now I can.
• Secondary Hydrops <> Menieres (the latter is ‘idiopathic’ and not continuous in presentation)
• Have all the recommended tests in any case to rule out dangerous stuff like neuroma (very unlikely but you might as well get it checked out).
• Always seek out a professional for a diagnosis - if you are not happy with the diagnosis, get another opinion
• Follow all conservative routes to recovery - surgery has a really bad record (60% failure rate according to Hain and to me this is unsurprising because of actual aetiology and anatomy of the ear) … full recovery can take years so bear that in mind … so be patient!
• As @GetBetter says, avoid stress and stressful situations … they will exacerbate things!

Good Luck and stay with us, we can help you along the road

[thenukes]

GetBetter,

Stress/Anxiety symptoms are very real as well. Just as real as migraine symptoms. They are both caused by chemical disturbances in the body. (Suspected electrical/hormonal, etc.)

Cause is an intersting word. I have a friend dx’d with Crohn’s. He’s had exactly one massive flare-up in his life… down to weight loss, bloddy stool, etc. Lasted almost a year. Turned out it was when his house was being forclosed on and he lost it. He got through that, and has been fine ever since. One flare-up in almost 50 years of life. Stress in this case appeared to “cause” his flare-up, though we could get into a conversation about gene expression, etc. Which was really the cauase?

There’s also a lot of research about migraine sufferers having a huge cross-section with panic sufferers.

For example, if your gene-set/DNA is that you COULD have a certain issue arise… but only will if certain stressors and anxiety situations are met… which is the cause? The DNA set or the anxiety?

This isn’t to be contetious at all, this is just to say I’ve watched thousands of people… with all kinds of conditions make massive improvements to their lives, and to conditions like chronic migrines and other conditions by approaching it psychologically… and many ONLY psychologically. (TMS therapy, etc.)

As I said before, it’s a hard concept to present to someone because most immediately become defensive and assume you’re saying “it’s all in their head.” As someone who literally almost didn’t make it through a stress disorder… I can tell you that the symptoms are as real as any other condition. I never had a migraine in my life until stuck in a state of chronic worry/stress and panic. (41 years into life)

Symptoms (pain) are all caused by messaging. Hormones via biochemical process. Hit your hand with a hammer and the CNS conducts a message to instruct your brain how much pain to feel. All pain is essentially subjective… based on the body’s chemical response to a situation. Same as being at a horror movie and feeling fear, when you know darned well there is no real threat. Your body seneds messaging.

My opinion, based on about a decade of studying these things is that psychological issues and stress play into and very well may be the largest causal factor (if not genesis) of a majority of chronic, hard-to-treat conditions out there that are not purely structural. (Like cancer.) You can look into the work of Dr. Sarno, Dr. Shubiner and others for work on TMS or PPD as well which modern mediine is starting to embrace.

Sorry to side track. But I found your “it’s the other way around” comment to be interesting. Not looking to debate… only offer the notion up that there a huge ground-swell of belief out there now that we are stuck with certain mechanical conditions that cause everything may not be true. This is actually great news for anyone suffering chronic conditions IMO! Again, this is a topic I love but can offend some, so hopefully I have not. I appreciate your input.

[thenukes]

TurnItAround,

Thanks so much for taking the time to make such a great list.

Taking your advice on the weight lifting. Really choosing not to do anything strenuous for now. (Which is hard for me) But, right now… just feeling like myself again is the first goal.

I’ve searched out hyrdops just a bit, and like meneires… seemed like the sx were not on par with my on the whole, but isn’t that how these things can be? I’ll learn a bit more there… and see how the ENT appointment goes.

My symptoms are largely low-level constant, rather than extreme. (For instance no vertigo and no hearing loss) So, that clouds this picture as well. Could I have a mild version of one of these things? (MAV/Hydrops/PLF?) Or, is this anxiety/stress mimicing. I’ve literally felt all of these sympotms in passing over the last 10 years at some point, but never constant and never in relation to an event like lifting.

So we just need more info. Most cases of PLF you read about via lifting seem to involve some hearing loss.

It’s confusing, but your list does help… gives me some things to think about and while I don’t want to go Google crazy, I do want to be armed with enough info as I see a doc.

Really apprecaite the warmth and help you provide here…

[turnitaround]

@thenukes

Could I have a mild version of one of these things? (MAV/Hydrops/PLF?) Or, is this anxiety/stress mimicing. I’ve literally felt all of these sympotms in passing over the last 10 years at some point, but never constant and never in relation to an event like lifting.

Absolutely, there are degrees of Hydrops.

These conditions can really suck and really freak you out. Anxiety is a natural response when your balance is affected … don’t think you are going crazy

If you don’t feel a leak of any kind and don’t have vertigo, it’s possible there is no PLF. Don’t obsess about PLF. I think it’s more likely you have a bit of Hydrops … don’t confuse this with Menieres, its not the same thing … don’t start Googling Menieres, it will just make you feel anxious and that’s the last thing you want to do. (I did and really wound myself up into a terrible state).

‘Hydrops’ just means ‘higher pressure in inner ear than normal’ that’s it, doesn’t mean you will suffer any longer term damage - its a reversible condition. Think of it like a bit of a ‘swelling’.

IMHO, the relationship between your dizziness, other symptoms and your gym incident in my view would rule out a ‘migraine’ cause … that unfortunately doesn’t rule out ‘migraine’ making an appearance at some stage (brain gets upset when ears are upset) … but hopefully won’t happen to you.

I was less lucky… I started getting migraines 12 months after my trauma. The condition got worse for about 1.5 years, ‘stabilised’ (got no more crp) and then started to improve.

@thenukes

So we just need more info. Most cases of PLF you read about via lifting seem to involve some hearing loss.

Like I said, may very well not be PLF, or if there was healed very quickly.

I had suspected PLF, but no tinnitus or hearing loss initially btw (unfortunately that came later as Hydrops built up over the next few months). I ended up, 6 months later after my trauma with some HF loss, I believe because of the pressure that had built up. I believe that is reversible and will improve over time, its not a direct ‘injury’ to the hearing hairs. Although not yet viewable on an audiogram I know my hearing has improved since my worst day because I get much less distortion on the local metro (sound used to distort terribly). Hydrops can change the resonant frequency of your inner ear. Obviously that messes up the audio response like it would a musical instrument. This is what had happened to me.

@thenukes

Really apprecaite the warmth and help you provide here…

Pleasure!

[thenukes]

TurnItAround,

I may have missed this, but what was your initial injury or cause? What was your most consistent primary symptom?

[turnitaround]

Pretty embarrassing and stupid - I pointed a shower into my ear.

I started to get dizzy about 15 minutes later and worsened by following day getting extremely dizzy and nauseous.

I completely recovered 5 weeks later (save for some odd daily fluid sensations that seemed harmless and didn’t effect me), only for it to hit me with its big tail 5 months later when it became chronic ‘MAV’ with a bang.

Still despite the obvious evidence of trauma, an oto-neurologist tried to convince me I had a migraine problem down to a genetic mutation. Needless to say, didn’t stick with her.

I warn you … .they may dismiss trauma … its controversial. PLF is very controversial. Welcome to the wonderful world of vestibular medicine!

[thenukes]

Sorry to hear it… but the fact that it managed to heal up is a big plus. Even if it relapsed, things that are truly “broken” generally don’t fix themselves. So it sounds like something that may just need more time for you.
I suspect you’re going to be done with this at some point in the near future.

Yes, I’ve read up on PLF and do see it’s a contested diagnosis. My wife is in medicine, cardio… and she says in her field they have similar diagnoses.

Agree, I’m prepared to be patient with the process. And in fairness if they were skepitcal about PLF… it would probably be reasonable as I don’t seem to have a lot of the hallmarks. That said, when something happens as the result of a “trauma” of some sort… and it’s lasted 6 weeks, I give myself permission to seek professional opinion.

My sucpicion, based on my history… is that this is another way anxiety/stress has manifested itself and the workout was just a trigger. (Hit my head in 2014 and had a month of similar symptoms… and went away with no care.) The brain/mind/body are tricky. I’m convinced it can use injuries… events as catylists to express stress/release hormones, etc. I think we understand about 1/1000th of what the body can/will do.

I’ve had gastritis, IBS, dizzy spells, nerve pain, headaches, neck pain, obsessive thoughts, foot pain, nausea, flu-like symptoms and probably 100 other conditions come and go in the past decade… all anxiety and stress. All alieviated by approaching them as such.

That said, it’s responsible to rule things out at a certain point and be medically judicious.
So again, your input will be very helpful in that process and in the interim, I’m taking it easy and being kind to the mind/body as that’s only going to help all conditions.

[turnitaround]

Just approach it conservatively.

Try the MAV protocol under supervision of oto-neuro.

Goal would be to keep you functioning so you can work and be comfortable and happy.

It buys you time and you will need time to get completely well again.

I’ve concluded such trauma injuries are healable in time … there are a few trauma guys and gals on here … @BHMaloney is one of them and his doctor says we all recover eventually as does my present one.

[GetBetter]

Let me speak to my own personal experience. MAV started after an intensely stressful two years for me. I have seen polls of various kind where people had a life-changing stressful event before MAV kicked off.

I strong believe if you had a genetic proclivity to migraine then this stress can kick start the MAV for you. But i tried meditation, yoga and mindfullness. They improved my acceptance of this condition but i was not getting better. The only time i started getting little better was when i started the MAV meds. Currently on 17mg Effexor and 15mg Amitriptyline nocte.

[flutters]

My experience is basically the same as Vigs.

[Onandon03]

@GetBetter

The only time i started getting little better was when i started the MAV meds.

Agree totally and with @flutters. I tried relaxation and nearly 3 years of Tai Chi, then 6 months of an hour a day of VRT. Then an online course of CBT (had forgotten that for a moment) and the MAV just got worse and worse with every attack.

I find it hard to imagine anybody who comes to such a forum as this isn’t really affected by MAV and struggling and it’s even harder to believe they could regain a better quality of life without recourse to drugs.