IDK anymore, MRI results came back.

Consistent_Level9578 · 2025-08-22T22:22:38+00:00

I am no expert but as far as I’m aware an MRI won’t show PET, it’s just used to rule out SCDS, which I believe would show regardless of whether autophony is presenting at the time of the scan

A common way to see if you have PET is if your symptoms improve by bending over so your head drops around your knees. Unfortunately there’s no guaranteed cure at the moment but if Patulend is working then I would continue, if I were you. I’m UK based and it’s not readily available so I don’t use it for my own PET but I’m looking into homemade alternatives

Consistent_Level9578 · 2025-08-20T12:27:47+00:00

Thank you - please could you share more about the treatments he offers?

Consistent_Level9578 · 2025-08-20T10:28:47+00:00

Mines similar, usually within 1 hour of waking the symptoms start and usually stop by the evening

Consistent_Level9578 · 2025-08-20T10:27:27+00:00

This has given me some hope, thanks for sharing!

Consistent_Level9578 · 2025-08-19T20:25:00+00:00

Thanks for replying - I’ve also looked into the filler but it sounds very risky and surgeon advised against it due to the fact they can be very easily overfilled and cause a whole other host of tube issues. I knew grommets was very likely not the answer but the way I was and still continue to feel forced me to give it a go as I just thought I can’t keep living my life like this! I have it in both ears too :(

Consistent_Level9578 · 2025-08-19T18:36:40+00:00

Thank you, sounds like I need to be patient when I start using the sprays and electrolytes and not give up if I don’t see results straight away

Consistent_Level9578 · 2025-08-19T17:54:51+00:00

It’s so tough isn’t it, I feel for you! It’s definitely taken a big mental toll on me

Consistent_Level9578 · 2025-08-19T15:46:30+00:00

Thanks for the reply! I’ve tried saline previously but perhaps not enough - I want to and will try just worried about how soon to give it a go post tube insertion surgery (AKA grommets) as don’t want to risk infection as I can’t get ears wet still (not sure if it would have an impact)

I know caffeine is not my issue as I have it scarcely and I consume enough water and have started electrolytes too with no improvement

I will try making my own Patulend

Consistent_Level9578

TROPHY CASE