When is worsening flight pain on descent a serious cause for concern?

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I got fed up with all the confusion. Esp as my ENT said barotrauma was "very rare. I do not think that is likely. Myofascial is more common. Yes. It is neurological." But wrote what he thought as "ETD + myofascial complex ??." Yet he never said I had ETD & the audiologist report shows I do not have ETD.

Anyways...there's an ENT Surgeon who wrote loads of papers and studies ETD so I went to see them so I could either rule out ENT issue altogether or have my gut feeling confirmed.

...Gut feeling confirmed.

Tympanometry redone. But differently this time. Had me do different exercises (ex. Valsalva, which I said I could not do anymore) & results showed no change. I literally could not equalise under pressure. Totally normal on the ground.

I've got baro-challenge-eustacean-tube-dysfunction. It's been going on for so long, I'm more sensitive now--even trains in tunnels mess with me.

Back to trying Otrivine + adding paracetamol to help with rebound headache as per the orders of 30mins before take off and 30min before descent starts. Only real cure is balloon sinoplasty but I can't afford it right now. Grommets are temporary and pose risk so I will pass on those.

Anyways. That's the answer for me. :) Now I can stop wasting NHS appointments ...

*I'm going to leave some feedback in hopes the NHS ENT department can start trying those exercises during tympanometry on patients that are referred for flight or diving pain. I truly think they just didn't know enough about this issue to help me properly.

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g0liadkin@reddit

Just found your thread. I got excruciating pain inside the ears when flying (especially on descent).

I had a balloon synoplasty a couple of years ago and it didn't help at all, don't really know what else to try.

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Lumpy-Fennel-9890@reddit (OP)

Me either. What you've said you had will cost me £5000 and I'm procrastinating on the appointment to ask, "but is there another way?" ... My B-ETD is in conjunction with TMJ & I have/had allergic rhinitis before all this crap. Now that there's an immunotherapy pill for allergic rhinitis approved on the NHS (UK) this year...I'm hoping maybe if I decrease my reactions to histamine...maybe my congestion will clear up over the years and idk have a knock on effect.

I'm honestly so confused about what to do. Awaiting a Maxillofacial specialist referral for the TMJ troubles. It's all super frustrating that no one can help once we get this bad.

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g0liadkin@reddit

I got a flight in a couple of hours, and thinking about random things to try lol.

The flight I had on monday was my first attempt after the balloon surgery, and it seems didn't quite work. I'll go back to the ENT and tell him.

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Lumpy-Fennel-9890@reddit (OP)

Good luck!!

Tbh what I've done is after years of trial and error. Its not the first thing anyone should ever do, or should want to do.

Hope your ENT can help you. I know Otrivine (afrin) is gold standard (30 min before take off, 30 min before landing as my private ENT told me who specialises in ETD. I had to be super clear to the flight attendant when asking to be notified before descent so I could time my spray right (they often think i just want to know when we're landing but realise when I clarify my situation). Otrivine (afrin) is available in any pharmacy and maybe even the airports. I think flight staff have it on board too for emergencies.

As you've had something done, even more important they get to the bottom of it & if what's safe for you to do to get through it. I hope you manage OK with your flight pain...distract and relax as much as possible...yawning helps a bit too but ultimately we just don't equalise pressure during sudden changes.

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g0liadkin@reddit

Yeah, I've used afrin in the flight on monday and I had 0 issues on the ascent, but I sprayed as soon as I noticed we were descending and it did nothing (although I may've sprayed with too short notice), I couldn't hear anything for like a day (like submerged) and had a random sharp pains inside below the ear all day.

In my case, I believe different from yours, I feel the pain inside the ear and also a bit below not sure why. Swallowing does absolutely nothing when this happens, and yawning gives sharp pains. I tried valsalva but it also did nothing although I was super soft about it, I never know when to stop or when I'm even doing it right.

Hopefully it goes fine today 🤞

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Lumpy-Fennel-9890@reddit (OP)

Yeah...30 minutes before descent is key to get it working best for our condition. My ENT told me 30min before take off & 30min before descent.

Have you been diagnosed with Baro Challenge Eustacian Tube Dysfunction?

I also have Temporomandibular Joint Disorder (TMJD basically a jaw disorder) which brings about pain and fullness in the ear, below the ear and when using the jaw too much. It can also cause or add to the pain upon flight descent. Maybe its that?? Its worth investigating. Otherwise could just be different to me simply because I have sinus involvement. If you're in the UK I can recommend a specialist ENT for flights you can see if you feel you need to try going private for answers (Bath, London or Cambridge for ex)

My NHS ENT diagnosed TMJ it by inflicting "severe" (but not my severe so I was surprised she labelled it that) in my ears and said its from my jaw. Said its a dental condition--go see a dentist. Said my TMJ was likely caused by bruxism so luckily got a night mouth guard (anterior bite plane) covered on insurance. I still struggle with it ... you can see a physio for it too. Sadly TMJ falls between specialities so most dentists don't know much about it. Maxillofacial surgeon is the best for it but unless you're struggling to eat or sleep a dentist won't refer.

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aarrtee@reddit

my wife had this problem on our honeymoon

her ENT and she experimented and found a solution

low dose prednisone 8 hours b4 flight... another prednisone 1 hr b4 flight

she bought two screw in ear plugs that create a nearly air tight seal in her ears.

she puts em in before the cabin door closes and plane pressurizes.

she does not remove them until plane is on ground and door opens again.

seems to work

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Lumpy-Fennel-9890@reddit (OP)

I called my GP surgery today to ask about prednisone (+ct scan for self pay private referral as ENTs one they did will be months later than my flight now)

Apparently, the GP I spoke to can't prescribe me prednisone. Not even a short course +/low dose, which is all I wanted to try.

GP, "You will need to speak to a specialist for guidance about this. They will decide what treatments are best and if you need a scan. I can refer you to one."

I said, "I already have a specialist. I was referred back in September 2024. They haven't suggested pain relief in any appointment despite me describing how painful it is and when my next flight is. I saw 2 different ENTs. One diagnosed TMJ & discharged me to a dentist who hadnt a clue but was a specialist in making bite guards it just wasnt enough because the pain is primarily frontal sinuses, and the 2nd ENT said facial pain symptoms was neurological not to due with the sinuses and referred me to Neurology. I've never been given pain relief at any point. When I saw the 2nd ENT last Friday and asked how to manage the pain as my flight is now really soon & he said, "You will have to speak your GP about pain relief."

GP, "Have you asked the ENT about prednisone?"

I said, "I didn't know it was a treatment option till last night when I was researching my issues after 6 years of worsening flight pain thats now mildly appearing in other pressure related environments. If it gets as bad as my flight pain, I won't manage. Its excruciating. I just went into the ENT appointment wanting to know what was wrong and how to relieve it. I didn't realise I would have to educate myself on things like prednisone in order to have it considered? They are the specialist... so I thought THEY'd guide ME...thats why I went to see them!"

GP went on about them not giving it out. Its a steroid. Not a decongestant... 🫠🫤.

Managed to educate him that Sudafed you buy in pharmacies is not the same strength as Sudafed behind the counter + how about trying that? That's the other higher strength option advised that I have never tried.

He didn't believe that it was different at first. I had to explain that it's put behind the counter because of people wanting to use it for the wrong purposes. He didn't know that. He found a nasal variety and pill. Wondered if the pill really was different. Maybe spray is better. I said pill please. "Probably the same dosage anyway as the Sudafed you've tried" I made him check. It was not. It was 60mg. What you can readily buy is 30mg ... I may have a sudafed prescription now.

So that was something.

To note: if you're not in the UK, the conversations with GP's are over the phone. They are made by clicking "call" button right at 8.30am to be entered into a queue. Once you convince the secretary to let you speak with one of the surgeries GP's (Doctors), you get a random call back from the GP for a 10min appointment. GP's haven't the time or resources to help properly sometimes, despite wanting to. Even the ENT appointments are time constrained, once you get one. The NHS needs a lot more funding and support 🥲

This might give an idea of why I'm coming to reddit now after 6+ years of this 🤣🫣. I feel like I have to be a specialist just to get people to see that my pain is caused by flying with previously diagosed chronic allergic rhinitis in Canada and to please help me with that not solely with TMJ or Sinusitis (thats different) or tell me to chew gum. I'm too far gone now. I need something stronger to get me back to a normal baseline. 😑

Thank you for your suggestion!!! Research online backs it up as a good temporary solution in advance of a flight for flight pain. I just can't get help. But maybe someone else will see this and it'll help them ✊️

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aarrtee@reddit

"Apparently, the GP I spoke to can't prescribe me prednisone."

You are in Canada? I do not know the laws or ...customs... for healthcare providers up there. I suspect it's more that your GP doesn't feel comfortable prescribing corticosteroids. In USA, my primary care doc can and does prescribe corticosteroids.

I'm a dentist: if its for a mouth problem where a corticosteroid is indicated, I prescribe them. I do not 'play doctor' on my wife.

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Lumpy-Fennel-9890@reddit (OP)

I am in the UK. I just want to fly home to Canada sometimes because of family.

I understand you don't play doctor on your wife. I was, in no way, suggesting that. I just felt like my GP didn't understand what treatments were available or suggested for this outside of what is readily available without a prescription (with exception of my prescribed Dymista spray).

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reiska@reddit

I've experienced similar pain and my doctor described me pseudoephedrine. I typically take one dose 1h before each flight and I haven't experienced any pain since I started using this med.

Perhaps you can bring this up with your doctor to see if they think it's a good idea to try something like that in your case?

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Lumpy-Fennel-9890@reddit (OP)

I just spoke to one this morning. It was a right difficulty (as seen in full in my response to aarrtee, suggesting prednisone. I could not get prednisone. But after much explanation (from me 🥲) about how sudafed aka pseudoephedrine is higher strength behind the counter... I think he prescribed it for me. 🫣✊️😂😂

Thank you!!! I need something to try when I go.

My flight will be just under 6 hours. I will get pharmacist advice when I go to pickup as GP couldn't advise... but from your personal experience:

Is taking it 1 hour before a flight ideal for short - or long-term flights like mine? Do you know if it's worth taking prior to the day if there's current congestion/tightness in the sinuses?

My GP referred me to ENT back in September 2024. I tried to get referred sooner because of a flight home thats now in 3 weeks time, but he wanted to try getting advice and guidance first.

1st ENT focused on TMJ + if nasendoscopy (showed swollen turbinates) + hearing (exceptional) + tymanometry test (normal) is normal -> discharge. 2nd ENT opinion focused on no it's not ENT related. "You describe facial [sinus] pain. That's neurological." What about the fullness and pressure built up inside and felt on bridge of my nose because I do have allergic rhinitis and the first long-haul flight before symptoms...I think I was really congested + got 2 weeks of no taste or smell after (typical of colds for me. Was summer of 2019 before covid). "Myofacial. Maybe some eustacean tube dysfunction involvement. But I say neurological. Definitely neurological. I cannot refer you to imaging for your sinuses because you do not have the thick yellow or green discharge from your nose. That means you need to see neurology." [referral to Neurology has led me to a scheduled phone call with them...in Dec.

I've got no symptom relief. No medications or non-prescription to help anymore.

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NassauTropicBird@reddit

For the life of me I don't understand why people are downvoting that comment. Fucking Reddit.

Have an upvote, as of this second your comment is back at zero.

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Lumpy-Fennel-9890@reddit (OP)

Thanks ! I'm open to feedback if I've come across rude or ungrateful. Just thought detail might be useful as I saw comments suggesting I see a few doctors, which I have. I'm doing everything I can based on professional opinions, I'm just left with no relief and not sure what's up 😅.

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NassauTropicBird@reddit

Now it's at 3, lol.

Not that votes mean dick, but it pains me to see people downvoting things for no reason, especially against someone looking for actual medical help AFTER seeing professionals.

/The after part is important on Reddit, lol. "I'm coughing up blood, should I switch to light beer?"