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


#53

I appreciate the article, and I agree there are psychological aspects, but there is no way I’m willing to believe there is no underlying physical condition. Add three years and many med trials and then tell me it’s an emotional issue.


#54

Flutters,

First off, my sharing my experience is no way a condemnation of yours.

Nor was my simple offering of another perspective meant to be a threat to your belief set.

To the contrary, it was MY experience… and that of a vast % of others who chased around invisible demons for ages, hoping to find a physical reason for their suffering. (Something “broken” or a “condition.”)

Science has already proven beyond and reasonable doubt that the mind can cause pain and literally create conditions. So, that ship has sailed. There’s no need to argue that.

As for your own PERSONAL experience, I certainly am not here to decide that for you. Only you can do that, and you are committed to the notion of a physical malady and if that is working for you, that’s what I suggest you continue to do.

Others of us have had success looking at other options.

Problems like these aren’t solved with rigid, closed thinking. I’m only offering one viewpoint.
And beyond that… the post certainly wasn’t directed personally at you of course.

As an aside… 99% of people refuse to admit that their problem could ever be anything other than a broken mechanism. I was one of them for a long time. We all have to make the decision for oursevles when we’ve had enough of one direction and try another.

Science supports that both are possible. Massive pain and suffering is possible with stress/anxiety as the GENESIS of that pain (not just BECAUSE of an underlying issue) … and, broken mechanisms (bone breaks, cancer etc) can cause direct pain as symptom. We know both are possible. Which we choose to treat as which is up to us… and dependent on circumstances.


#55

@flutters. I’m with you every bit of the way. I think you and I share very similar symptoms. I see no mention in the PPDS article of totally debilitating 8 day long you-can’t lift-yr-head-off-the-pillow attacks which bear a marked resemblance to traditional migraine which has been known about for a very long time. I also saw no reference to vertigo. The top neuro-otologist who disgnosed me with probable MAV was categorical it had to include true vertigo, ie either the person or the environment spins. Dizziness can be something completely different. So just maybe a lot of this forum’s supporters actually have quite different conditions which happen to share some common symptoms. When you look at an extended list of symptoms relating to vestibular disorders they are remarkedly similar, bound to be surely because whatever’s causing them ultimately they all affect the same areas. Any balance disorder can put your body off kilter, your head goes away from where it should sit, heads weigh a ton, voila stiff neck.

Everyone’s opinion is based on their own experience and, like you, All I know is my condition didn’t start as a result of me having an anxiety disorder or any psychological problems. I would swear on oath I never ever suffered anxiety, depression or any other psychological problems before my MAV became chronic 24/7 ~not in my entire life. What’s happened since is another story altogether.


#56

This PPDS? Where does this fit with PPPD? Any idea. Looks remarkedly similar at first glance to me. Although didn’t noticed any reference to non-vertinginous dizziness/rotary vertigo which according to the neuro-otologist who disgnosed me seems to be a vital part of MAV diagnosis strategy.

It’s probably academic really. I’ve yet to find a GP who’s heard of MAV yet. I wouldn’t want to start throwing PPDS or PPPD at them. They are always complaining about being overworked at it is.


#57

Onandon,

I think what you’ll find when you discuss this issue is a phenomenon similar to discussing the existence of God. Those who have had God work in their lives accept his existance… and those who haven’t, or choose not to… will vehemently reject the notion of it being possible.

The common demominator? Neither can prove it.

One of the stronger underlying theories of PPD (the science of non-structural pain) is that the brain actually uses pain as means to mitigate other emotions. (Subconscious.)

This is evident when many who have suffered back pain for many years and show STRUCTURAL (so they thought) issues on MRI make lifestyle (emotional/stress/thinking) changes and the problems evaporate. OR… more interestingly, something called “the symptom imperative” where the back pain will go away… and headaches start.

One important thing to understand about non-structural pain is that there are endless varities. You mentioned “knowing your condition didn’t start because of xyz.” Of course, you can’t really know how a condition started. We don’t really know how measurable things like cancer really start, much less transient, chronic conditions like migraine, IBS, etc. We can guess… but without massive and direct trauma we don’t really know, and even WITH massive and direct trauma… lingering pain may be neural pathways that have learned the pain and use it as sees fit.

But again, the interesting part of the discussion to me is how this discussion inevitably plays out when brought up. We will often defend OUR condition as being differnet. People defend their (perceived) structural problems almost like they would a child. Almost as if it being real… gives it a sesnse of meaning or explanation that somehow makes it all easier to carry with us and keep. I’ve done this exact same thing.

From WebMD, here is the description of MAV: A vestibular migraine is a nervous system problem that causes repeated dizziness (or vertigo) in people who have a history of migraine symptoms.
More from the description:
-There’s no blood or imaging test that can tell for sure.
-There’s no specific medication for vestibular migraines.
-There is the possibility of getting relief through use of some devices.

Even doctors can’t figure this out. Transient, hard to treat, sometimes chronic, hard to pin down, can’t measure it, can’t take a picture of it. Sounds like about every chronic pain I’ve had. :slight_smile:

My version of migraines was more pain-related, lasting long stretches of time and often ocular in nature as well. (Seeing bring lights, optical light illusions before becoming light sensitive followed by migraine headaches.)

These genearlly went away as I addressed the lifestyle/emotional/stress issues in my life.

I’m going to go out on a limb and guess that most people here have not only experienced MAV as their singular issue. Going to guess that most of us here have had other issues come and go, had this morph/graft with other things, had things precede it, etc. (A simple glance around at stories shows this.)

Here’s what I experienced over the past 8 years:
-Migrianes
-Ocular Migraines
-Gastritis (searing stomach burning with weight loss - almost a year of highly restrited eating.)
-Back pain (missed work - no strucutral injury apparent)
-Knee pain (old injury site flares up at will)
-Panic, anxiety, depression - as bad or worse than all other conditions combined
-IBS - Years of very tangible (Without TMI) issues that massively disrupted life
-Groin pain - testicular pain with nothing found on examination
-paliptations/heart issues (only minor/common struturual issues found)
-Brain fog, dizziness, balance issues, tinitus

That’s a tiny portion of the list. Btw… all of my medical check-ups are fantastic. A+ bloodwork. A few common strucutural issues here and there, but we literally all have those.

Yet, all of the above diappeared when I approached it from a non-medical, non-structural perspective.
Some took a while, some came back later to replace other ones. But all went.

Could I really have hundreds of “structural” issues in my body when the doctors say I’m basically perfect? How could I experience literally hundreds of different chronic issues over a decade periiod?
Sure, it was the most stressful decade in my life… but could my back “injury” (which doesn’t exist) suddenly present itself at that time by chance, then be replaced with another thing when I managed to beat it?

Then we’re going to have to discuss the scores of people who have overcome tricky diagnoses like migraine, GERD, gastritis, debilitating back pain, tinitus, pelvic floor disorder, and dozens of others… by addressing non-medical, non-structural issues.

Our mind controls everything we do. We can literally use our to take a hammer and hit our hand to cause pain if we want. We are 95% mental beings, the body just comes along for the ride. The science (yes science) of the origin of chronic pain issues is rocketing forward whether we choose to believe it it or not and future generations will benefit greatly.

The notion that psyhological issues can “only make things worse” of course has been definitively disproven. Psychological issues can indeed be the GENESIS of pain at perceived structural issues. (See phantom limb pain syndrome.) And the list goes on from there to hundreds of other examples.

Again, I’m not here to tell someone that they have to let go of their structural belief set if it makes them happy any more than I’m here to tell an athiest they have to believe in God. What I’m saying is, there is a big world out there that many of us have experienced… and scores of people are breaking free from things like chronic migraines by opening their minds. I know what its done for me, and I’m only discussing my experience from that viewpoint.

There is no “proving” that something like MAV can’t be psychological in genesis. It literally can’t be proven, so there’s not much use in trying. What I do believe is helpful is for people to simply read up on the science of mind/body illness, learned neural pathways and chronic pain syndromes via PPD and TMS.

We all make our own choices. And hopefully we can all discuss them with curiosity and respect.


#59

This woman injured her ear when diving into water and talks about how she was glad she knew she didn’t just have an anxiety disorder because the cause was obvious:


#60

Healthboards is the dark web of all things health. Talk about a freighting maze of confused, scared people.
Agree with the “not so friendly” analysis. lol I can’t recommend anyone spend much time there, and you’ll find a ton of anxiety conditions there (health anxiety) masquerading as concern over other issues. (“Do I have a tumor!???!?!?!?”)

That said, certainly the body is capable of acute, traumatic injury. As I said before, my wife works in cardiac surgery. She opens people up, replaces valves and closes them. They harveset hearts to save lives. No one doubts the veracity of what impact injuries can do.

I think the question comes when these conditions linger, are chronic, become harder to poinpoint… we can’t measure them… we can’t blood test… we only have a set of symptoms. (See IBS for example.) We can speculate on why, and for some people we may have an answer that is satisfactory. For others, not so much.
We start guessing. One person thinks she has xyz because of food allergies, the other for no reason… etc.
Once we’re in the guessing game, and things become elusive… we should always be a bit suspicous.

Traumatic injuries rarely fix themselves… then flare up again. Bones don’t heal and then re-break every few weeks during stressful times. I’ve never cut my finger, only to have it open itself up again 4 months later for a week… then heal… then open again for a week… then hurt for 6 months… the good for 3 years… then come back during a time of stress.

I do find it funny though that someone would be “glad” they had a traumatic injury as opposed to be being the result of stress. Seems counterintuitive to me. But, as the theory of mind/body science goes… we are all mostly terrified of our own emotions and will go to any length to avoid them, and certainly avoid admitting they may be the true underlying source of so much of our mental… and physical suffering.

Again, we can hit our hand with a hammer and it will hurt. That much is certain. Beyond that… its a wide open world with regards to the genesis of pain and chronic conditions.