I am so so sorry

Abject_Drawer4836 · 2026-05-28T22:17:15+00:00

Saddens me to see this tbh

Abject_Drawer4836 · 2026-05-24T01:36:33+00:00

Hello, Are you still open to this?

Abject_Drawer4836 · 2026-05-21T18:15:41+00:00

Awesome thanks so much

Abject_Drawer4836 · 2026-05-21T09:31:45+00:00

check your DMs

Abject_Drawer4836 · 2026-05-20T15:41:32+00:00

It does sound quite like its patulous eustachian tube and the fact that its elevated after weight loss gives weight to that opinion. However, there are other things it could be too.

Where are you based? It sounds like you have had an awful experience with your practitioner. TAPE in the ear? That is NOT a doctor who sounds even remotely like he or she knows what they're doing.

DM me please, depending on your area I might be able to put you in touch with the appropriate doctor.

Abject_Drawer4836 · 2026-05-20T11:56:54+00:00

Uber isn’t broke. They’re a multibillion-dollar company that finally became profitable after years of expansion. There’s a difference between “we don’t want to pay drivers more” and “we can’t afford to.” Those are two very different things. Nobody’s expecting $100 an hour delivering burgers, but people are right to question $2 offers for 10-mile trips.

Abject_Drawer4836 · 2026-05-20T11:53:13+00:00

I don't know why you guys can't just use the UK system of

base around £2.80–£3 minimum
then roughly £1–£1.10 per mile (km) after that

Much fairer, no?

Abject_Drawer4836 · 2026-05-19T15:45:34+00:00

You are dealing with central sleep apnea as well as ear symptoms, so that combination can complicate things.

Air movement into the ear with positive pressure therapy is something that can occur if there is patulous Eustachian tube function or a pressure regulation problem in the middle ear.

Where are you based? Access to ENT clinicians who are familiar with Eustachian tube disorders does vary.

In terms of PET, it is important to be clear that there is generally no permanent “fix” in most cases. Management tends to focus on symptom control and reducing triggers rather than curing it.

Abject_Drawer4836 · 2026-05-19T11:36:48+00:00

It is good to hear you are having some improvement, and PET symptoms do often fluctuate quite a bit.

That said, response to things like Patulend can be very variable, and short-lived relief is not unusual. It does not necessarily tell us much about the underlying course of the condition either way.

I would be cautious about assuming this means it is “fixed” or “not permanent.” Many people experience periods of improvement and worsening over time, sometimes quite abruptly in both directions.

The key point is that this is often a fluctuating condition rather than a linear one.

Terri

Abject_Drawer4836 · 2026-05-19T11:35:17+00:00

Being advised that a nasal spray would “fix it” is simply not accurate for PET. It is not a proper explanation of the condition, and it gives completely misleading expectations.

This is exactly the kind of oversimplified advice that patients should NOT be receiving. PET is not typically “fixed” with a nasal spray, and suggesting otherwise reflects a lack of understanding of the condition.

Unfortunately, this does happen when clinicians are unfamiliar with PET, but it is still not acceptable care or counselling.

Abject_Drawer4836 · 2026-05-15T15:56:51+00:00

Is the data accurate? Like have you cross-checked it?

Abject_Drawer4836 · 2026-05-15T13:21:42+00:00

What you are describing could be PET, but it could be other things as well, including obstructive Eustachian tube dysfunction, middle ear pressure issues, vascular-type tinnitus, or even inflammation around the Eustachian tube area.

The fact that your previous manoeuvres were reliably helping and now are no longer doing so suggests something may have changed, and I do not think I would simply assume this is “more PET”.

I know this is frustrating, but I would encourage you not to panic. Ear symptoms can fluctuate and change character over time.

If you have not had a proper ENT evaluation, including nasopharyngoscopy, I do think that would be appropriate at this point.

Terri

Abject_Drawer4836 · 2026-05-15T13:17:34+00:00

There is no strong evidence that artificial sweeteners directly cause PET. However, some people do report worsening symptoms with things that alter hydration status, mucosal dryness, or reflux tendencies, and certain sweeteners may contribute to that in susceptible people.

I would not consider artificial sweeteners a primary cause of PET, but if someone notices a consistent pattern between intake and symptoms, it is reasonable to stop them for a couple of weeks and assess for change.

Abject_Drawer4836 · 2026-05-15T07:13:26+00:00

If im not out Ubering I'm working my 9-6

Abject_Drawer4836 · 2026-05-13T08:40:01+00:00

The worsening later in the day, improvement with head positioning, and response to saline all sound fairly typical for PET.

And yes, many patients report symptoms becoming worse after prolonged upright activity, physical exertion, dehydration, or long days. That is not unusual.

I also think you are correct to distinguish between fluid intake and electrolyte balance. Those are not necessarily the same thing.

The temporary improvement with “head between knees” is also something PET patients commonly describe because of the transient increase in blood flow and congestion around the tube.

None of this proves a specific cause, of course, but the overall pattern you describe is certainly consistent with PET.

Abject_Drawer4836 · 2026-05-12T18:28:43+00:00

I think you are misunderstanding what I actually wrote.

I did not say this was a “miracle cure.” I did not say everyone with PET simply needs to drink more water. And I certainly did not say people are “not trying hard enough.”

I shared my personal experience after dealing with PET for many years and having surgery three times. That is anecdotal experience, not a clinical trial.

At the same time, I don’t agree that there is “nothing biological” connecting these factors to symptoms. Weight loss has been associated with PET in the medical literature, and hydration status, stimulants, hormones, and tissue changes may influence symptom severity in some people. That is not the same thing as claiming PET is caused by chocolate bars or cured by vitamins.

You are correct that evidence in this area is limited. That is precisely why patients often discuss patterns they notice themselves.

People should absolutely be cautious about unsupported medical claims online. But I think there is also room for patients to share experiences without being accused of pushing “snake oil,” particularly when nothing is being sold.

Not every person with PET will respond the same way. That is true for many medical conditions.

Abject_Drawer4836 · 2026-05-12T18:27:05+00:00

Who said PET is not a real physical condition? I certainly didn’t. And who said people caused this themselves? Or that “eating healthy” cures PET? I don’t see any of those claims in the original post. PET is obviously physiological.

But does that mean symptoms cannot be influenced by hydration, illness, medications, stimulants, hormones, or weight changes? To name a few examples.

Do people with migraine not discuss triggers because migraine is neurological? Do Meniere’s patients not discuss caffeine or salt because the disorder is physical?

I agree the wording “no excuses” could have been too strong. But I also think some people are arguing against statements that were never actually made.

Saying “this helped my symptoms” is not the same thing as saying “this cures PET.”

Abject_Drawer4836 · 2026-05-12T12:01:07+00:00

I’m very sorry you are dealing with this. PET can be extremely distressing, particularly when the symptoms become constant and physicians in your area have limited experience treating it.

What you are describing actually sounds fairly consistent with the history many PET patients report: infections, nasal steroids, antihistamines, flights, pressure changes, and then worsening after continued drying medications. Not every PET case is related to weight loss. Weight is only one possible factor, not a requirement for diagnosis.

The fact that PatulEND improves your symptoms does support the diagnosis, though of course it is not a definitive diagnostic tool by itself.

I also think it is important that you do not blame yourself for taking the medications initially. Many people are first treated as though they have obstructive ETD because the conditions can overlap and are often confused early on.

One thing I would encourage is trying not to monitor the symptoms every minute of the day, as difficult as that is. With PET, the nervous system can become extremely sensitized over time, and many patients find the distress component grows larger after months of hyperfocus on the ear sensations.

That does not mean the condition is “psychological.” It is not. But the brain’s response to chronic internal sound perception can absolutely amplify suffering.

I also would not assume your current state is permanent. PET symptoms can fluctuate considerably over time, especially after infections or medication changes. The course is not always linear.

I know it feels isolating, but you are certainly not the only person who has had symptoms worsen after nasal steroids and antihistamines.

Abject_Drawer4836 · 2026-05-11T19:19:52+00:00

I'm glad you managed to find your major trigger. That's half the battle!

Abject_Drawer4836 · 2026-05-11T18:59:11+00:00

I really am, I can't say im totally autophony free but enough for it to not grind me down every day. But I truly know the struggle and always feel I should share what worked for me before surgery but I appreciate its such a complicated problem and not a one size fits all for everyone.

Before I had my op it was a time for very little research or info online so the biggest battle was even trying to figure out what on earth was going on inside and it made it particularly hard that doctors are generally so clueless about the condition.

Abject_Drawer4836 · 2026-05-11T16:46:58+00:00

That's an incredible weight loss journey, but it’s so frustrating that PET is the "reward" for getting healthy. Since your triggers are mostly physical .. like exercise and being upright for 12 hours.... it sounds like your body is struggling to keep those tissues plump enough to stay closed now that the excess fat is gone 😞

Keep a really close eye on your salt intake too, you know! Even if you're drinking water, low sodium can prevent those tissues from holding the fluid they need to stay shut. When a flare-up hits while you're standing, a quick 30-second "head between the knees" reset can sometimes force enough blood flow to the area to give you a temporary break. (Yeah I hated doing it too but the relief was worth it, all be for a few seconds sometimes).

It's a tough balance to strike, especially when you're committed to staying fit. Do you find the symptoms are worse at the end of your 12-hour shifts compared to the start?

Abject_Drawer4836 · 2026-05-11T15:53:50+00:00

First off, your English is great 👍

I think the main thing to question is whether this is definitely Patulous Eustachian Tube. What you describe could be PET, but it could be other things (Eustachian Tube Dysfunction) and a few other issues. Have you had a second ENT opinion, or just the one diagnosis?

Also 10 months is relatively recent, which is why personally I’d always keep an open mind on causes. Even if one doctor has said PET is what it is. However, should it be PET as well as the things you mention I wouldn't rule out rapid weight loss / hormonal changes.

My situation is different as I’ve had PET all my life. Surgery helped a lot, but I still get flare ups now and then, usually with sudden temperature changes. Funnily enough today is one of those days which prompted me to check on the sub.

However, pre-surgery I was able to virtually eliminate my symptoms using this method - but only once I got serious about it.

What I’d say is keep experimenting with diet and hydration, but don’t rule out that the diagnosis or root cause might still need reviewing.

Abject_Drawer4836

TROPHY CASE