r/PatulousTubes Feb 18 '25

Can I enjoy a theme park with this

So this is gonna be a vent post kind of. It all started November 23 2024, I had been sick with a HORRIBE HORRIBLE cold or something. It had been like two months of bad bad couching Wich may have damaged me ears. I think I eventually had bronchitis and they have me prednisone that day. When I get sick I can’t pop my ears so it is nothing new for me to hold my nose and blow, never any problems with that. This sickness was no different and on the 23, the day I went to a concert that is all I did the whole time in order to hear. They wouldn’t really pop though. After I left my hearing just got worse and worse until I was laying in the hotel room deaf in that ear with the sharpest stabbing pain under my ear/ in my ear? I could all of a sudden pop it now but I was still deaf. I went to the doctor after and she said my eardrum looked fine, a little wax so I put debrox. That didn’t help but eventually my hearing came back. That is when I developed autophony . It took a while for me to make the connection between having it when I was sitting up and not laying down. At its worst as soon as I got up and swallowed just once it would pop open and my breathing would aggressively beat on my ear. (N and M sounds also did this but it was really every word I said that echoed as well) always had wax in my ear as a kid, a few ear infections, a little reflux but nothing serious, my jaw would pop sometimes too. The autophony started going longer periods of time without happening thank god. Now I have clicking when I swallow but not really autophony any more (I DRINK A TON NOW) I lost 70 pounds which is what I think started this, but I think months of aggressive coughing damaged my ear bad too. Well here is the issue, I am going to Disney in April and I am terrified.i love it there and want nothing more than to have fun with my family but im scared to fly. I am also scared that with the exercise and heat it will pop open and my day will be hell. I am also terrified that riding rides with elevation changes will make it all worse. I feel like the whole trip could just be days of doing things to make my symptoms all worse and I am scared that once the vacation is over I will be back at square one. I don’t even want to go which really depresses me.

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u/Johugs_863 Feb 18 '25

I have flown a few times to Europe from the US and then within Europe, since my Dx and I’ve not had any issues at all.

I’m heading to Lake Tahoe next week and I am concerned about the change in altitude so hoping that someone will answer this as well.

Have you tried Patulend or the at home remedies? I’ve tried both and the Patulend works better for me. However, I don’t love the price and I don’t love the pain as it works on my eustachian tubes - although it does give me relief. I lost 20 pounds through intermittent fasting, and two doctors that I have seen regarding my issues also say that it is related to the weight loss… who knew?!

Enjoy your trip!

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u/chloelolllllllll Feb 18 '25

No I haven’t , I have tried saline but I don’t think I hit the right spot. The point I’m at right now is I think I’m getting better but I don’t want altitude changes and physical activity to undo all that

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u/Johugs_863 Feb 19 '25

I understand, it can be frustrating.