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My journey to Hell ... and (almost) back.


#101

I see. Well its a very tricky thing to diagnose, but with your history its a strong possibility. Fistula’s aren’t always very violent in presentation … I had severe vertigo for 5 weeks after my trauma but then became symptomless for 5 months, but the fistula had not healed - in my case it was obviously leaking fluid every night and I had a sensation of fluid clearing in my ear every morning (no fluid actually leaks out of your ear canal - this is all internal between the inner and middle ear and behind the ear drum). Had I known how serious this was I might have taken action but quite frankly most doctors are totally ignorant about this condition and its complexities.

The tricky part comes once it starts to heal - the pressure builds up in the ear and it seems it can cause explosive force on the wound which blocks it from fully healing.

This condition is called secondary hydrops and can take a long time to resolve. I’ve heard of some people being ‘cured’ by PLF repair but there is so little controlled evidence of the natural history of this condition that its hard to know if you should have surgery or not (which of course runs the risk of exacerbation)

Vestibular migraine is a reasonable classification but the root cause is not understood. Some doctors and neurologists believe its caused by migraine, others believe this is wrong. The split is political. Its a ridiculous state of affairs. Some doctors don’t even believe perilymph fistula exist - this is really dumb as they are the perfect explanation for the onset and progression of hydrops. Its also obviously the weakest point of the inner ear and the one most exposed to the outside world and most at risk from injury. Good luck explaining the spontaneous onset of these symptoms any other way without resorting to nebulous concepts,hand waving and pseudoscience. I guess there is a possibility that something else in diving causes the perilymph region of the inner ear to shrink, and the endolymph to grow but surely a fistula is a better explanation?

I recently posted a paper which has now found MRI proof of hydrops in subjects diagnosed with vestibular migraine. We need more of this evidence to stop doctors talking rubbish about this condition.

Good luck at the doctors!


#102

I absolutely agree, my colleague said that often barotrauma gets misdiagnosed as other vestibular problems especially by non diving doctors. How do they go about diagnosing this though, you said an MRI can pick up the hydrops? The thought of having to wait months on end for all these tests on the nhs is miserable, I had to move back home from Mexico to England and I just want to back as soon as I can but it’s looking less and less likely.

Luckily I have never experienced anything like the fluid in the ears that you described, only a slight ringing, my doctor said he believed my ears are just more sensitive now to changes in pressure due to the migraines, I’m honestly not sure what to think.

I suppose all I can do now is keep taking the medicine and wait for my doctors appointment. In the meantime did you find any kind of exercises particularly useful? I was thinking perhaps yoga or pilates as they are meant to be good for balance.


#103

Quite frankly calling this a migraine is verging on scandal. I’m certain this will all come ‘out’ in time. Ear medicine is such a mess!

Migraines are involved, for sure, because sensory upset will incite the brain to go into a migraine state, but migraines are not the root cause, I believe.

MRI can pick up the hydrops, yes, but that particular test I doubt will be offered clinically in this country - maybe in the states? The MRI has to be 3T and you need an injection into the ear. That’s not so conservative. Fluctuating tinnitus, imho, guarantees you have some level of hydrops, so why bother with a more invasive test?

Exercise - nothing that increases head pressure, no bending below the waist - yoga and palates I would strongly discourage, no swimming. Walking! Walking is absolutely the best exercise as it a gentle way of getting the brain to compensate. Ive compensated so much now I’m off medication, and that’s a result of compensation due to months and months of walking. I may have also healed a little, and maybe some of the hydrops has receded, but I certainly haven’t healed fully.


#104

Ok, walking sounds safer anyway, I’ll try to keep active over the next few weeks and see if it makes a difference. I believe the doctor was so sold on the idea of migraines because I already suffer from ‘normal’ migraines so I suppose to him it was a logical connection.

Obviously getting a proper diagnosis is extremely important but it does look like the treatment is virtually the same? Like I said, I am taking 10mg of Amitriptyline with the possibility of increasing the dose when I see the doc again and he also suggested the possibility of vestibular physiotherapy. Would this also be more or less the treatment with hydrops? I am just trying to figure out what the two different things would mean for me in the future.

It’s really great to hear you’re nearly healed and have been able to come off the medication and still go about your normal life!


#105

Exactly. Aside from the possibility of exploratory surgery and use of diuretics. (about to quiz my doctor about this)

Well it’s not quite a normal life yet. I’ve not got back into the workforce and some mornings if I’ve had a vertigo attack at night I’m very unbalanced. Vertigo is my biggest enemy right now as it pretty much holds up full recovery it seems. Thankfully I’ve had a week’s break from it


#106

So I had three good days in my latest run of good days

I went to see my doctor (a rare oto-neurologist who is also a surgeon). He was pleased with progress but I noted I still seemed to have a leak in my middle ear that occurs mostly at night and that I almost invariably get mild to moderate vertigo seconds after laying down but at no other point in day now. Seems my fistula is not very good at dealing with the pressure from inner ear. He said keep going with diet and holding head up at night and lets see how this goes - in other words - hold off on the surgery (there’s definitely a fistula, but no guarantee surgery would fix me if I’m also suffering from SEH (aka MAV?))

On my penultimate good day I had a pizza and cheesecake. Uh oh, but on that night I appear to have gotten away with it. Following night however, WHAM! Bad vertigo attack which was followed up by the WORST imbalance in months! Following day was a SHOCKER, improving slightly the next day but had another minor vertigo attack. On top of this I am now getting really annoying single tone tinnitus in my GOOD EAR along with a lot of pressure. My theory is that my body is asking my ears to pump out lots of perilymph to make up for the leak in my injured ear … trouble is the healthy ear is getting too full. I have a sneaky suspicion its not the bad ear that’s making me imbalanced - its the pressure in my ‘good ear’ which the brain had become more reliant on. Trouble is, if I keep leaking in my bad ear, the body is just going to keep pumping perilymph into both of my ears (that’s my hypothesis). The pressure in the bad ear remains ‘ok’ but the good ear suffers.

Last night I decided to sit up to sleep, which prevented a full on vertigo attack, but I could tell I was leaking still (a kind of drip drip sensation at irregular intervals). Downside of this approach is its quite hard to sit up and sleep. I lost a few hours of sleep just starting into the dark and thinking, but overall at least thankful I didn’t have a big attack. This morning I was slightly more balanced but still not great.

So out of desperation this morning I concluded that I had to do SOMETHING, I can’t go on like this, and given my lack of neurological symptoms and the mildness of my vertigo spells, I don’t think it makes sense to go back on the ami, I need something to hit root cause - so I read up about some of the things PLF sufferers have done and decided to use the DIURETIC that I had lying around that I was originally too scared to use - Bendroflumethiazide. First pill just popped (2.5mg), will update you on efficacy. Will go to GP to get blood electrolytes checked in a few weeks or so. (you need to check Potassium levels, though I hope to goodness lowish potassium in blood helps reduce endolymph pressure)

Ugh … take care guys


#107

James- Good luck with Diuretic. Keep us posted how it shapes up.


#108

Thanks Vignesh. Will do.

Early days but far so good but results mixed. More tinnitus. Less ear pressure. Slightly more lightheaded. Less imbalanced. But hasn’t resolved good ear tinnitus.


#109

If you ask me good ear tinnitus is good old fashioned MAV. I get that when i sleep. I sleep on my good side against the pillow and i get tinnitus and i go what the heck ! But it stops after a while.


#110

Yep I’m not too worried about the good ear. Yet.


#111

Thought I’d cut and paste something in, here’s what I wrote on another thread in December:

Definitely improving!

Just over 2 years of MAV and I’m now 95% WITHOUT MEDS. Very confident of further improvement!

WHAT’S GONE: No more nausea, ear pressure, ear pain, extra tinnitus on bending down, hearing distortion in loud places, feeling of pressure in ear when driving, vestibular attacks, migraines, anxiety, rocking, marshmallow floor, push/pull, vertigo, spinning or attacks of any time (touch wood!). All these symptoms are gone! Able to walk through malls and supermarkets with few issues (mild discomfort on occasion)

WHAT’S ONGOING: Only fluctuating tinnitus, occasional migraine brain rumbles/discomfort (usually due to artificial light), mild head positional discomfort in bed, some mild episodes of motion intolerance and mild imbalance remain! I can use the computer and watch video almost without issue. Oh and I still get a feeling of a little fluid in my middle ear every morning or at night if I get up for bathroom, but its much less than it was.

DIET: On diet I am fairly strict on excluding alcohol and caffeine, but have milk and chocolate. I play lip service to low salt diet when I feel like it - but sometimes am weak and have a packet of crisps or order a takeaway!

BRIEF HISTORY: Also started fall of 2015 (Spring if you include original bout of Severe imbalance which lasted 5 weeks). Got worse for a year with mounting symptoms. Especially bad April 2016 when I had 15 hour long migraines/Vestibular attacks every three days. Couldn’t walk through supermarkets or malls without immense discomfort. Started Ami (10mg moving up to 20mg). Quality of life improved but symptoms still bad. Lots of scary relapses. Had a crazy relapse after 6 months of no attacks. Disheartening. Imbalance improved very slowly though. However started to get nearly daily positional vertigo resolved after about 6 months with sleep position discipline. Even so 1.5 years after starting Ami, in fall 2017 I was able to stop medication. Titrating down was easy but imbalance got a little more obvious and was tempting to restart but persevered. Vindicated as got through it. Now better than ever and on no meds.

IMPORTANT FACTORS I BELIEVE HAVE HELPED RECOVERY (so far): stopped using headphones, careful when bending over, careful to avoid loud noise, keep head up in bed, do not cook with salt, drink lots of herbal tea, cut out alcohol, get out as much as possible and don’t restrict activity, have been out on walks even when when feeling totally rubbish, TIME!, low stress levels (very important to get a grip of anxiety and stress imho) = OPTIMISM! (“This too shall pass!”)


What does 'better' feel like?
#112

Since then I am still getting better and still without medication.

Less imbalance and almost no ‘brain rumbles’ now - artificial or mixed lighting causes little or no discomfort. Since December I’ve had the odd bad week, but definitely a general upward trend. I have not had any spinning and only very mild vertigo in bed on occasion.

Fluid feeling in ear after reclining for a while (like overnight) is still with me, as is a short burst of ‘the sound of the sea’ tinnitus when i right myself from bed in the morning (I note that one fellow board member apparently has this latter symptom @suki530)

I still get mild positional discomfort in bed which fluctuates day by day.

Tinnitus can be as annoying as ever, but usually can ignore it. One slight improvement with the tinnitus is that I don’t seem to get the crazy pulsating tinnitus I used to get (after some meals especially). It still pulsates mildly sometimes but nothing like the way it used to do.

Not following much of an diet at the moment, save keeping caffeine down to one cup of coffee on any day (if at all) and avoiding alcohol mostly - however was able to enjoy red wine around the Holidays without issues. Still going crazy with the fluids, particularly Ginger Tea (which has liquorice in it which is supposed to help with inner ear health btw).

IN SUMMARY: I’m feeling better now (whilst off meds) than my best days a year ago whilst still on meds, so excellent progress I feel.


#113

James,

Glad to read this post to hear you’re getting better and have rid many of those awful symptoms.
What is the particular brand of ginger tea you drink?


#114

Good to hear James. Thanks for posting the periodic progress.


#115

I would also would like to know what ginger tea you are drinking. Currently i am drinking celestial maple syrup ginger tea and although its yummy, i know there is better ones out there.


#116

Twinings Spiced Ginger Tea

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#117

It looks like we can get the Twining’s here in the US, at least online.

A good product line that I’ve found at the grocery store here is the Yogi brand:

They’ve got some good ginger varieties. They also have one called “Throat Comfort” that is good even when you don’t have a sore throat:


#118

OK, I hope I’m not going to jinx things, but I have some good, positive news to report.

My dizziness and imbalance is pretty much GONE!

I’ve gone at least 2 weeks without a single feeling of imbalance, something that’s been with me since October 2015!!

And remember - this is WITHOUT MEDS (which i’ve been off since September) or supplements! I’ve even drunk alcohol and a coffee or two within this period. OK not long I know, and relapse is possible, but lets see …

I still get tinnitus of varying annoyance and some mild positional vertigo in bed at times, but things are definitely improving!

But lets face it, this is night and day! Hardly believable given the absolute hell I was going through, just like many on this board.

Hang in there all! Hugs for everyone!


What does 'better' feel like?
#119

Congratulations, i am very happy with the news!!!


#120

Wow! Two weeks!

Can you think of anything you’ve been doing differently (say, for the past month) that might have contributed to this remission of symptoms?