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


#33

I found it interesting that one of the patients of Dr.S recently quoted that he said “The sooner you hit MAV onset with the meds the chances of getting better are higher”. The doctor used an example of a nail being driven into wood. The longer the nail gets hammered the harder it is to pry it out, was the analogy used.


#34

Oh dear. NOT sure I like that one. Not much hope for me then. My MAV started in November 2003, I didn’t even get a diagnosis until October 2015. What’s that? A month short of 12 years. Started meds in December 2015. I have several times read in scientific papers etc a time lapse was not indicative of reduced chance of success. Must admit I found that difficult to believe although I so wanted to. Expect DR S is much more likely to be right.

I much prefer this quote from an article in The Guardian and found it very useful. It stated that the Balance Centre in Medway, associated with Dr S, conducted a survey and ‘found on average it took 44 months for people to arrive at their door. The study showed that on average patients are 70% better nine months after they first visit the clinic’. When I was really struggling with the MAV symptoms I used to keep repeating the last bit to myself, as if it was a yoga mantra or a CBT affirmation. I even noted the 9 months, from when I’d reached my maximum tolerated dose on my calendar. It seemed to help.


#35

Hi Helen,
Don’t lose hope. Migraine has its own trajectory during a women’s life independent of meds or not. So i don’t think one can generalize.There are hormonal changes in play as well.

MIGRAINE HEADACHE IN WOMEN
https://www.dizziness-and-balance.com/disorders/central/migraine/migraine%20in%20women.html

MIGRAINE HEADACHE IN PREGNANCY AND NURSING
https://www.dizziness-and-balance.com/disorders/central/migraine/migraine_pregnancy.html


#36

Hi Helen,

BTW after you went on meds…did you say you had a relapse ? Did you do Tai Chi before the meds and stopped because of the flare-up ?

Wow you did manage 2003 to 2015 without meds. From here on things should be better.


#37

@thenukes, this is a very interesting statement, especially the part about your workout being “just a trigger.” I don’t know whether this is an accurate analogy, but maybe like PTSD, where someone might go along fine for a while after whatever the original incident was, but then something happens to trigger the PTSD and that’s when all of their symptoms really kick in.


#38

Long before my MAV, I was working out a lot at the gym and feeling great. One night, I was doing leg presses on an incline. Felt great. Finished, and stood up for next machine. I got so dizzy. . and I don’t mean lightheaded. I could barely walk outta there, like on a rough boat. Got home and still felt bad. Tried Gatorade and went to sleep. Still off the next day, and several days after. I went to the Dr. Had a 24hr heart monitor to ck for arrhythmia. It was normal. Dr said I had a major vasovagal response. And since I had a “sensitive” nervous system (now I think the more correct term is dysautonomia), my brain couldn’t just revert back to normal instantly. And anxiety flared, which is to be expected. I improved over time, with low dose benzos ( not recommending necessarily- they can be addictive but help me tremendously).
Also… Those symptoms, while scary and horrible, seem very different from my MAV of today.


#39

Didn’t I do well, but I did it. Not only managed, I lived and well. Didn’t even know what MAV was. Didn’t know it existed. Ah, how blissful was that. Actually, looking back after more than 3 years of constant 24/7 rotary dizziness since, it wasn’t too bad at all. Mainly because between acute attacks it ALL went away and I could completely forget about it and lead a perfectly normal life. The attacks would just knock me flat for a few days, in those days 2-3 days duration, total incapacitating. I would just wake up with constant spinning vertigo, then after the duration it would all magically stop and off I’ff go ‘normal’. Attacks never more than 2 a year in those days, virtually all in winter-time. Never ANY symptoms between attacks. I could happily drive confident I wouldn’t suddenly get vertigo. I never tried it but guess I could have stood on my head even no problem. Then after about a decade I did start to sign breakthrough symptoms between attacks. Out walking Straight along a cycle path actually I suddenly veer off at an angle. When the car stopped I’d feel as if I was still moving forwards etc and so on, what I later learnt typical balance problem symptoms. It went downhill from then on right through until the meds kicked in,

relapse after the meds? Don’t know. How does one know. I still get symptoms, sometimes more severe than others. Is this relapse or breakthrough? Something it must be but what?

Tai Chi. Did TC years before meds. Started once I suspected balance problems. Stopped classes very soon after 24/7 dizzies started. Did some at home as and when but it generally made me worse. Cut right back/Stopped when started VRT for 6 months.

Do bits of TC at home but what makes me stop in it will wind up the dizzies like VRT. Overdo TC when 24/7 dizzy and the vamp up lasted for 4-5 days every time. I wasn’t helping it I figured. Just tormenting it.

Will go back to Tai Chi. I Will.


#40

From timing and research now I can swear mine is totally dictated by hormones. Can’t see why some clever research medic couldn’t sort that one for us females but still. Hope one day my brain and hormones will reach a truce. That’s my only hope of getting, one day, off the meds.


#41

I believe there must be multiple things that cause MAV, but yes, at least one of them could be impacted by hormones …


#42

Hi

I do believe my migraines are governed - not impacted - by fluctuating hormones in some way or another. Fluctuating hormones could well be why they happen. I’m not talking in my case about monthly cycles, it’s more over a lifetime. Timing wise I see direct links between huge hormone changes and the onset/cessation of my attacks during different periods of my life. I don’t believe that much in concidence for it to seem otherwise. I don’t believe trauma to be the cause, not for me. I believe one’s system needs a predisposition to the condition in the first place but that’s probably the same with alot of medical issues. I also believe other existing medical conditions may influence both the attacks and the eventual outcome.

I’ll be contentious here and say I do believe in hormone related migraine. Migraine/MAV and all the dizziness. All the light sensitivity and visual issues are so typical of migraine. Nearly all my attacks link back to a lengthy spell sitting in a restaurant 36 or so hours before. Why should an ear leak occur every time I eat out, and not at any other time. The mixed restaurant lighting - photophobia - so migraine-like. What causes the migraine. I can only speak for me but I say hormones. Not ‘impacted by’ but ‘caused’ by …


#43

Napagirl,

Sounds somewhat familiar. I’ve actually heard quite a few stories about issues after working out. It could stress the body in a number of ways, physically or as an anixiety trigger… it’s hard to say. Each person seems to have a slightly different version of the story.

Mine has me 6 weeks out and still wobbly and woozy to varying degrees. Anxiety disorder/stress can absolutely do this as well… but the triggering via the event is what I feel like it’s time to check out.

Fistulas seem pretty rare… but apparently of them… some % is from lifting. I’m trending towards believing it’s stress hyperstimulation, but it’s time to rule things out to be sensible about it.

On that note, have my first ENT appointment today and will update here if anyhitng worthwhile comes out of it.

Thanks all.


#44

One other thing you might want to have checked (if you haven’t already) is your Vitamin D level. It can tend to go down in the winter when we don’t get exposed to as much sunlight. The correct test to get is called “25-hydroxy (OH) vitamin D.”

It might not have anything at all to do with your symptoms, but your comment about “all in winter-time” jumped out at me…


#45

This from the very smart lady in ‘the Sunshine State’!


#46

Thanks Manatee… I’ve been checked a few times over the past years. It’s usually on the low side of normal. (But normal) Trying to eat more fish, and luckily I get plent of sun out here in Cali. :slight_smile:


#47

Hi

Thanks for that. I’ll certainly make a note of the test name. Could well be I’m Vit D deficient with our UK climate. People here have been advised to take it through winter now routinely here I’ve read somewhere but not in our newspapers and never been told by medics personally. I’ve been concentrating on the MAV really and haven’t done anything about a test. Here it’s only available privately, not NHS routine at all. They just assume you are deficient and give you the pills. Unfortunately I can’t take most of them because of the GERD. I did take one sort for a couple of weeks, had to titrate up … on a vitamin D pill, honestly there’s not much hope for me really, … then within 2 days of reaching the correct dose had the longest and worst MAV breakthrough I’ve had since starting preventatives set me back weeks so that was goodbye vitamin D tabs. Of course the other thing that most winds up my MAV is prolonged exposure to sunshine. Of course, it would be wouldn’t it. Still I suppose it could be worse, at least I haven’t been made to live in the South of France or anywhere very sunny, just dull old UK for me.


#48

ENT wants me to do an MRI and a hearing test. I thin, my hearing is fine. My brain? Who knows. (Pretty sure it’s working.)

So, I did go today… though not much in the way of new info to indicate or exclude a fistula or anything else. I didn’t bring it up (yet) as I don’t want to steer the doctor or come across as self-diagnosing. I want to hear what his unbiased assessment is first. I didn’t even tell him what I suspect, which is 90% chance this is another bizarre manifestation of high stress/anxiety symptoms.

So we’ll see.


#49

Bryan:

  • MRI is usually to rule out neuroma’s in these circumstances (you can’t even see concussion on MRI apparently) … they are pretty low-res! … but I’m sure your brain is fine :slight_smile:
  • There is no such thing as a reliable clinical fistula test … it requires exploratory surgery to determine … but even then I suspect it could easily be confused with Secondary Hydrops … this is an under-developed area of medicine.
    • They have found a way to detect Perilymph in the middle ear cavity but you can’t do that fast enough before the end of surgery. Have written about that test here.. In any case it’s very hard to fix a fistula just by patching it
    • most surgery fails … my theory is that it is because you end up with a fluid imbalance and ‘swelling’ which will basically push the patch off (though my doctor claims that his glue won’t budge!)…
    • doctrine that PLF leads to hydrops … best bet is to go conservative route and follow the MAV protocol (as per Hain). Most of them are supposed to heal in time … though I can tell you my hydrops, whilst its got much much better, is taking its gawdarntime!

Discuss your stress & anxiety with your doctor.


#50

Strange things, when you think about it, MRI. with luck and in probably 99.5% of cases for MAVers at least they come back to tell you all the things (‘nasties’ - like brain tumours) you DON’T have and we then come away. Very delighted and happy about the diagnosis you haven’t been given. Then the medics can drop you into the huge bucket of ‘unknowns’ Called MAV, PPPD or whatever with impunity. Then everybody’s happy, or are they.


#51

Hey there… I haven’t read all the responses above to your situation but it might be worth it for you to look into TOS - Thoracic Outlet Syndrome. The bit about it happening when you were working out prompts me to suggest it. The disequilibrium you describe can indeed result from cerebro vascular problems as opposed to vestibular. Google: “Bryan’s Story” on the Center for Thoracic Outlet Syndrome at the Washington School of Medicine in St. Louis website.

Best of luck yo you in searching from an answer. It can be a frustrating and scary journey.

Chris


#52

Thanks Pugg,

Spoke with my wife about this who is a Cardiac NP who works in vascular and thorasic. She actually diagnoses people with this. Ironically, its one of those diagnoses that’s apparently a bit controversial in her field.

That said, she said I don’t fit the hallmark symptoms of the condition and it’s usually a repetitive injury or trauma to the area. (But even then, there are differing opinions.)

Right now, psycholgical factors are the most likely cause. But will await tests to rule out other issues.
In the interim it’s about catering behavior to alllow for healing which means resting when I can, and fretting as little as I can about it.

Again, while organic (acute physical) causes are still being ruled out, here’s a good expanation of the condition which can arise for so many people. They call it PPDS, which is a fancy way to say… psychologically induced or stress-induced balance/dizzy problems.

My guess is, some non-trivial % of people who have rolled through this forum have something similar.
Not all, and certainly we always have to rule out physical causes. But, we also have to consider the bulk of evidence out there as to ALL things that can cause these transient, hard to pin down, vague, chronic issues.