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You just described the past 13 years of my life


#41

Prolonged stress is what caused my present relapse. Note: relapse. In this sense, a medical term for the acute and chronic flare up of unknown duration of an underlying, known physical ailment.


#42

And had I been born a fella (hormones? Huh!). and disliking sports as I do, neither would I.
Vexing, ain’t it.


#43

I can quite believe that is possible and very annoying once you start doubly worrying about the worry that might worsen your condition … ugh … sorry to hear.

I think once you have MAV in whatever form, stress is your enemy.


#44

True, though my stress was work induced. I run a business. December I worked all but five days. I’ve since learned my lesson and hired help.


#45

TurnItAround,

Agree… there are degress which one can always affect the other. I think we are all hammers and everything looks like nails to us. If we were brought up with a mechanical view of health and our experiences support that experience. I was a highly “western,” mechanical thinker with regards to health until about 5-6 years ago when I experienced what I went through, and saw so many others recovering from conditions they were told were structural in nature. How could this be?

I thinnk in 50-100 years, the amount of data on this will be staggering and the public will be addressing healhtcare in a much different way. Of course we’ll always have the healthcare structure… and need it. My wife replaces faulty valves wtih functioning valves and helps save lives. There will always be a need for medicine and interventive healthcare.

But 50 years ago… the idea that back pain could be generated from emotional sources was unheard of. (Practically) People would reject the idea instantly. Now, a massive groundswell of practitioners understand this is indeed the case, and a whole new branch of healhtcare is developing… looking at ALL conditions differently, factoring in new methodologies in cases where “scturctural issues” like bulging disks were thougth to be to blame. It’s well documented that the mind can use existing strucural issues… or old injury sites to produce pain when it wants to. Pain is simply messaging, and messaging can be sent from the brain and the brain’s alarm system for whatever reason it chooses.

It’s a fascinating world if info opening up, and I’ve seen it help so many lives. Finding a way to blend this new information with traditional medicine is where I think the biggest advances will be made.


#46

healing? I think we underestimate the body and it’s ability to heal itself, spontaneously, without intervention.

If you look at the MAV meds, a lot of them feel like ‘coping’ meds as opposed to ‘curing meds’ (though I would separate Calcium Channel and Beta Blockers out because there maybe something more interesting going on there …). I have a feeling Amitriptyline did nothing for me except reduce symptoms and allow me to get my life and sanity back. Reduction in stress & it’s related hormone (ADH) might have had an impact thinking aloud (because ADH affects the inner ear they hypothesise). But generally I feel the real work to improve my condition was done by my body.


#47

You are in California, yes? Have you considered CBD oil?

The symptoms you describe are similar to the ones dogging me the past 4 months. After MRI was negative for acoustic neuroma but positive for paranasal sinus disease my doctor (a D.O. not an M.D.) started looking for allergies. Food allergies were mostly negative and I will be having more thorough blood labs to look for the reason behind my high IgE number and elevated eosinophils (white blood cells) . Environmental allergies.

Meanwhile, I am using rhinocort, benedryl and vaping cannabadiol oil. I think the CBD oil has been a miracle for me and my non-vertiginous disequilibrium spells have mostly vanished. My tinnitus is gone and my hearing in my left ear is restored (what was left of it anyway, I am 61 yrs old, and knew i’d lost some hearing there decades ago, well before the “dizzy” spells and tinnitus started). I had smoked plenty of pot in my days so I wasn’t afraid of medical marijuanaand anyway CBD oil does not have thc so you don’t get “high” you get calm instead. Took away all the panic and helped me to sleep almost immediately. You might consider it…

Best of luck to you! Chris


#48

Hi… Can I ask what symptoms it has helped you with?


#49

Hi… Sorry what is PLF?


#50

Blurred vision, balance, headache, ear pressure and tinnitus


#51

I have read claire weekes. But I don’t think VM is psychological though stress can make it worse.


#52

I try to be open minded to all of these theories, but for me there is an underlying theme in most proposed cures. They all tell you that it may take a really long time before they will work. I don’t know if the drugs/diet/therapy are the key or not but I always wonder if you might just get better on your own as the issue heal itself.

A good example is the heal yoir headache migraine diet where the author acknowledges he didn’t use the normal scientific methods to prove the diet theories but says you need lots of time for it to work. I don’t doubt that some foods can cause issues or exacerbate existing problems. But if it takes 6 months to get better, couldn’t that be mostly just time to heal.

Same with the drugs. I see many of them as just helping you to cope with symptoms while you heal. And that may help you heal faster so I’m not saying the drugs are bad if they help you in that way. And some drugs may actually affect changes that can make you better but I don’t think the science is great or proven in this area.

I am in James’ camp in that I think my issues are from defects in my physical balance system and not cased by migraines but instead causing migraines as my brain trues to deal with the bad info it gets. I’m convinced these physical issues tie to pressure and chemical balance as part of the issue. So I can see that diet could have affect on this and some drugs could have positive affects for instance diuretic to help lower pressure and keep it more consistent. And if anxiety issues are causing blood pressure issues that could also be helped with the right drugs. But I still think there are some physical issues that if fixed would be a true cure. Unfortunately the science in this area is not great and the surgeries would be very risky.

What I don’t like is doctor’s that don’t acknowledge that you have issues they can’t nail down and insist they know what’s wrong with you and it’s all in your head.


#53

Dave we are on the same page. And yes, if you get better its because you are healing spontaneously I suspect.

And because imho this is possibly down to a very fine imbalance of fluids in the inner ear, it takes a lot of time to correct itself.

Which should give us heart because:

  1. It’s reversible
  2. It’s not ‘damage’, its ‘imbalance’

It’s an upset to the homeostasis of the ear imho which might have a variety of causes, and one of them is trauma - but the inner ear is so well protected I could only imagine a fluid leak, ‘a bleed’ as the most likely issue to affect it. Unless you’ve had a goodness-knows-huge clout to the head you are very unlikely to have cracked the skull!

So yes, I agree, all the drugs are doing in some cases is ‘symptom management’.

However, in some cases there is a possibility they are doing something more direct - e.g. Beta or Calcium channel blockers might be counterbalancing an issue with one or more of the processes involved in homoestasis that is going awry …


#54

20 years of symptoms that didn’t see marked improvement until I added an SNRI. It wasn’t about healing on my own. I can affect it with diet and lifestyle changes, but for me this is ultimately a brain chemistry issue. I have a chemical deficit that requires the addition of a foreign intervention (i.e. meds) to fix. I have too many symptoms that aren’t vestibular to neatly fit into an inner ear/homeostasis box, though all of them make sense if the culprit is the brainstem.


#55

Dave ,

Glad the diuretic and low salt works for you. I tried water overloading and low salt and did nothing for me. Migraine diet works for me though. Not contesting what you are saying, just sharing my experience.


#56

Perhaps we should look at it differently. MAV is the collective name for a wide range of symptoms which stem from various forms of balance ‘upset’ - for want of a less controversial word - which occur as a result of malfunction somewhere in the vestibular system. This malfunction, which in itself can have wide and varied manifestations, can be caused by trauma or be idiopathic. Some people can easily link theirs to trauma, probable ear injury etc. Others see no such link. In fact their studies of their own symptoms lead them to alternative conclusions. Like @flutters my symptoms only make sense to me if the brainstem is the culprit. Retrospectively I see now, even the dullest ENT consultant I saw spoke some words of wisdom (although despite the tests etc couldn’t give me any sort of diagnosis) told me all my (MAV?) symptoms were nothing to do with my ear/balance problems and that ‘you really shouldn’t be that ill with this!’ At the time, in my ignorance, I thought he must be inferring I was an absolute wimp - Unable to stand up? With a bad ear? What? Unfortunately what he didn’t tell me was to go find a neurologist.

I totally agree there is a strong possibility that time heals. It is a principal belief in people who practise The Alexander Technique that the body will always try to heal itself. Could well be that the drugs taken are ‘just’ for symptom management. All I know is, after more than 13 years of my symptoms getting slowly but progressively worse, the only thing that seems to have given me improvement is the preventatives I take. As I take betablockers I would be interested to know why it is they may prove an exception and, if so, what is it they are thought possibly to be doing to improve the cause. Has somebody read something somewhere.