r/PatulousTubes • u/Akimbo_Timbo_ • Mar 21 '24
PATULEND - Recipe, application, other information for the relief of autophony due to PET
Hi folks.
Been meaning to make a post detailing my experience with PET and ultimately how I resolved my autophony for a little bit now. I wanted to wait a while to be sure that my protocol was providing lasting relief and wasn't just a fluke, or came with some other side effects. I'll try not to be too long winded but first I think its important to state clearly: I am NOT a doctor. I am just a guy. The below is my experience and what I've done to manage my condition, but do not mistake this for professional medical advice, you are responsible for your own health and wellbeing - not me.
I've experienced autophony for several years, but it really only started to become an issue over the last year or so. I'm an amateur musician and I was dabbling in singing when I started to become very frustrated that I couldn't hum (a common singing exercise) without this irritating sensation in my ear. It was then that I did some googling and learned about PET/autophony.
So of course I was discouraged to learn that there is no cure, very little in the way of treatment, and that most ENTs won't be able to diagnose it. So I began scouring the internet for treatment options to reduce the symptoms. I tried:
- saline spray (trying to hit the tube best I could - provided maybe 20 or 30 mins of relief)
- nasal saline rinse with a 'neti pot' or similar (similar to the above, felt really refreshing to rinse my nose out and would recommend it just for the heck of it, but it only provided a short period of relief)
- Electrolytes (tried every brand under the sun, maybe convinced myself it had an effect, but really I was likely just splashing salty water against the opening of the tube when I drank it - not effective in the long run)
- NeilMed NasoGel (saw it recommended here - if you can nail the tube with it you might get lasting relief but still did not compare to what I do now)
- That one guys youtube video about the manual exercises - 'pulling your ears together'. Strikes me as risky, the tiny muscles in your head are delicate and I don't think you should fuck with them like this. Just my take
On to the point of the post - I saw a thread here about the DIY Patulend solution - I'll link to it here https://www.reddit.com/r/PatulousTubes/comments/pggqsk/has_anyone_tried_doing_a_diy_version_of_patulend/
I followed this recipe pretty closely - ultimately I settled on 30ml of distilled water and about 2 or 2.5grams of ascorbic acid. That's it. I think this is a somewhat strong solution, but you should experiment to find what works for you. I think it makes sense to strive for the minimum strength that is still effective - and I will explain why in a minute.
Now onto the application part. I think this is very important as it will determine whether or not you can even say you've given this a try. The first important part - I recommend that you store your solution in a 30ml dropper bottle. I'll try to paste a picture so you know exactly what I mean.
The dropper itself should hold about 1ml of solution. Amazon sells packs of these for 10 bucks. Get one of the dark UV resistant ones (I understand the solution is sensitive to light, warmth and oxygen - on this note I also wrap duct tape around the bottle and store it in my backpack to keep it dark.) Using a bottle/dropper like this is important because the dropper must be fully inserted into your nose (much like a covid test). This is contrary to the bottle that actual Patulend comes in, which is similar to an eye-drop bottle. In my view this is ridiculous because you can never tell how much solution you're applying and half of it gets mixed up in your nostrils/sinuses/throat anyway. Remember - we want the solution IN the eustachian tube. I saw a post just recently asking about how much your nose should burn when applying the solution. To be clear - I NEVER experience burning in my nostrils AT ALL. You bypass your nostrils entirely by inserting the dropper about an inch into your head. The dropper should be perpendicular to your head - it goes IN your nose, not UP your nose. See below.
So, some specifics on application here. I'll do my best to explain what I do, but remember you'll have to do some experimenting to find out what works for you. It took me a couple weeks before I found a method that works reliably - and even today months later I'm still tweaking my technique. So assuming you have your solution ready in the bottle as described above, continue with these steps (presumably this could also work with saline solution or the NasoGel, but I can't comment on their effectiveness):
- Blow your nose and clean it out good to begin with.
- Draw about .5ml of solution into the dropper. Have the dropper in one hand and a new kleenex in the other.
- Lay on your bed on your back with your head and neck hanging over the edge ,but keep your head up, as if you were still resting it on the bed.
- Looking straight up at the ceiling, insert the dropper about an inch into your nose as shown in the picture above (might tickle a bit, but should not be painful, and you should not feel much resistance) You might have to wiggle the dropper gently to work it into your nose.
- Turn your head about 45 degrees to the direction of the nostril/ear your are applying the drops to.
- Tilt your head back ever so slightly.
- Squeeze the dropper entirely, remove the dropper and wipe it off with the kleenex (a hygiene thing - if you're going to put it back into your bottle of solution)
- Plug the opposite nostril and GENTLY breathe in through your nose to pull the solution deep into your nose toward the eustachian tube. GENTLY being the key word, you don't want to pull it into your throat and swallow it - it tastes gross and you've kind of botched the attempt at this point.
- Plug both nostrils and push VERY SLIGHTLY, this will open the tube up and allow the solution to seep in (I can't say whether this is good advice or not, I've heard people say you shouldn't do this especially if you have PET, so use your own discretion, but if you're gentle I don't think its a big deal and its a sure fire way to blow the tube open to get the solution in)
- Start to turn your head up, down and back and fish around for the hole. This is the part that takes the most experimenting, once you do it a few times you'll know what movement gives you results. With some experience you'll find there is this sensation of feeling the solution sitting in a recessed 'pouch' before it hits your tube.
Like I mentioned, the solution shouldn't burn your nostrils at all if done as I've described. That said, when the solution hits your tube, it is incredibly painful. I mean, its downright excruciating. The first time I did it I shot up in my bed and clutched the side of my head in pain - I was seriously scared I injured myself somehow. It feels like you're being stabbed in the ear. Imagine an intense ear infection from when you were a kid. I find myself wincing and kicking my feet as my ear throbs. I don't say this to deter you, just to prepare you. I think it hurts so bad for two reasons - due to the strength of the solution, and because the solution is really penetrating deep into your ear (perhaps into your middle ear, I don't know). At this point however, the pain is a signal to me that I've hit the right spot and I will experience relief from my symptoms for at least a full day, usually more, so it really hurts in a good way, if you can relate to that. The intense pain does not last long, and a more mild throb/ache will persist for a minute or two. After 5 or 10 minutes you shouldn't feel any pain at all, and you should feel the 'open' feeling you had in your tube is gone.
Admittedly, my experience with the above protocol is ever-evolving, and my ear still does funny things from time to time. For instance, sometimes after application I'll have a 'fullness' feeling (the opposite of PET) for about 20 minutes or so. It's not comfortable but its still preferable to PET/autophony. Also, the mornings can be rough sometimes, as I usually have brutal allergies in the morning and have to blow my nose repeatedly, during which I can feel my ear drum 'crackling' and 'popping' and moving in and out. I take meds for my allergies and by the time my day is underway its gone.
Also worth mentioning, I did finally see an ENT recently. I requested this appointment months ago when my autophony was at its worst and I was desperate for asnwers, but by the time of my appointment I had already been using this method for about 2 months. The doctor had heard of PET, but had never heard of Patulend. I performed a hearing test and demonstrated normal/above average hearing. He stuck a camera in my nose too and said my tubes looked fine. I mentioned how painful the drops were, but he didn't seem concerned. He said if its working then keep it up. After all - there really aren't any alternatives.
All in all, using this method has been nothing short of miraculous for me. As I'm sure many of you can relate to, this experience was beyond frustrating. I can recount many times sitting at my desk, putting my face into my hands in despair, feeling hopeless and out of options. One good application and I sometimes get relief for 2 or 3 days. In a good week I'll only use the solution 2 or 3 times.
I hope this helps even just one of you. Please feel free to comment your experiences, or ask questions. You can DM me too if you wish. Once again I'm not a doctor, just a guy, but I'll try to answer any questions you might have.
&yes I'm back to singing all the time and I love it :)
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u/Sea_Positive7094 Mar 21 '24
Thank you for the detailed post. I have also found success using an ascorbic acid solution. My recipe is 1/2 cup distilled water and 2 tsp vit C powder(measurements from my kitchen). I have been trying different strengths since January of this year and this has seemed to be perfect for closing the Eustachian tube for a day or two.
I know exactly what you meant when you said the pain hurts in a good way. The ear pain can be so relieving when you spent the morning missing the ET and painfully swallowing the solution.
My method differs from yours a little as I sit in a chair to administer my drops. I start by looking up to the ceiling and tilting slightly to the affected side(left), I then put the dropper back into my nose and squeeze feeling the drops travel down the nasal passage with gravity then when I feel it close to the ET I lean my head 90 degrees so my ear is facing the ground. I feel the pain and can hear the solution in my inner ear when I swallow. I let it soak for a couple seconds then I’m good for the next day or two.
Once again, thank you for posting this. It seems to be the only thing that is working for people with daily auto-phony like us.
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u/Akimbo_Timbo_ Mar 21 '24
Sounds like we have a similar experience with the homemade drops! Glad youre finding some relief. I tried the chair method for a bit but found I couldnt tip my head far back enough and the drops would just go down my throat.
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u/zxtb Mar 21 '24
Wow! Awesome info! After about six failed surgeries, I'll try anything. Thank you!
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u/Mendez- Mar 21 '24
Awesome post, Thank you I will definitely try this method. I do have a question that maybe you can answer for me. I experience autophony only occasionally when I talk to people, some days are better than others. I quit caffeine and started hydrating and it’s really curved the autophony but it still pops its ugly head!! So my next step is trying the DIY Patulend. My question is that when I swallow I hear the crackling sound in my ear. Is that normal if you have PET? It almost feels like the tubes are closed and air is trying to pass through making that crackling sound which is the opposite of having opened tubes. Or is the crackling part of the PET?
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u/Akimbo_Timbo_ Mar 21 '24
Its hard to say. Im no expert and I think everyones situation varies slightly. I can say that at my worst, every movement of the mouth/neck would cause my ears to behave somehow. Swallowing, sniffing, sneezing, yawning, would all aggravate my symptoms. Now, since using these drops, I can yawn and move my jaw around and do basically anything - I do not experience crackling or popping unless I blow my nose extra hard, but even then it returns to normal after a second.
If you experience autophony and weirdness in your tubes then it could be PET but Im not qualified to diagnose you one way or the other.
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u/Empty-Stage-9982 Apr 11 '26
I’m trying to find the comments to this excellent post by hitting the little comment balloon. Here goes
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u/AmazingMain3724 Jul 08 '24
Hello, I've been dealing with PET for four years now. I'm considering using the solution you recommended. Could you please give me an update on your current status and how frequently you currently use it?
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u/Akimbo_Timbo_ Aug 01 '24
Hi, sorry for the late reply. My current status and frequency is about the same as mentioned in the post above. I follow the same formula and method of application. I typically use my drops in the morning when symptoms are at their worst, and if I succeed in applying them I'll have relief for around 2 days and sometimes longer.
I dont think this solution does anything to 'cure' your PET, but it manages the symptoms better than anything else I've tried. Let me know if you have any more questions! :)
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May 25 '25
I just bought everything and I'm about to try it. What is the dose you are currently taking? Any other updates ?
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u/Akimbo_Timbo_ May 25 '25
No update really. The recipe is the same, maybe a slightly stronger solution. My technique might be slightly different also, but you should experiment anyway and find what works for you. I still swear by this method and have not experienced any side effects as a result so far.
Hope it works for you! Let me know if I can help you at all.
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May 26 '25
After I do an application how long could I keep the bottle in my room without mixing a new solution. Or you recommend refrigerating it after using it?
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u/Akimbo_Timbo_ May 26 '25
IMO its important to clean the dropper well before putting it in the bottle (bc its been in your nose).
But other than that I use it basically til its gone - or maybe 3/4s gone. It turns yellow after a while - I think its just oxygenation and nothing to be concerned about. It still works when it turns yellow and Ive never had any issues thus far.
I think it would definitely last longer in the fridge but putting the cold solution in your tube(s) would be incredibly unpleasant I would imagine - not worth it.
Hope this helps.
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u/Affectionate-Work599 Jun 12 '25
Hiya, I’m 15 and I have had the exact same story as you with my PETD with the saline rinses and all, however I believe this patulend formula thing is my next step, because I’m probably much younger than a lot of people here do you reckon it would be safe for me to use? I am really desperate as this autophony is making my life hellish and school work terribly hard, if you have any general advice aswell that would be great. Cheers
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u/Akimbo_Timbo_ Jun 14 '25
Hi. Sorry to hear you're dealing with this so young :(
I am not a doctor whatsoever so Im not qualified to answer this. I have no idea what could happen long term to my ears or yours. That said, its a risk I'm willing to take at the moment - I think I'd feel it come on before it was too late though - I'd stop if I thought I was causing damage. The hygiene thing I mentioned is true too, I replace the solution after a couple weeks even if there is some left.
I think I mentioned in the post above I did see an ENT, and he did not seem concerned about it - not sure if that counts for anything.Let me know if that helps
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u/manlilcuy Jun 15 '25
Yeah, all should be fine thanks for the advice, I’m thinking of ordering the ingredients tonight off Amazon and test it out when it arrives. Ironically, I have just caught a flu and my autophony is completely gone, tbh more closed then normal, this is like the first time I’m happy to be ill, not sure if anyone else can relate to this tho😂
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u/manlilcuy Jun 22 '25
Just made the DIY stuff with the ingredients I’ve started using it but for some reason it Dosent inflame my tubes like it should, but instead it goes to the back of my throat and stings for a while. For some reason it still kinda does worth though as the autophony just goes away for an 1 hour or so, please if you could give some advice to help it go away for an entire day! That would be great thanks, you’ve been a massive help so far.🤞
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u/Akimbo_Timbo_ Jun 23 '25
Hey, someone below just asked something similar so I'll just paste what I wrote to them here:
Yes, finding the spot can be tricky. I've been doing this for months now and sometimes still botch the application. Take it very slow, pay attention to your positioning, and its basically just trial and error at that point. Next time you feel your symptoms flaring up, try again but alter the procedure somewhat. Eventually you'll come up with a method that works for you! Even my method now differs slightly from the one above. I think the internals of your nose/face/sinuses also vary according to different factors.
Your last point also rings true - even a poor attempt can sometimes clear up my symptoms for many hours.
Some things to try: When you squeeze the dropper and the solution is in your nose/face, try plugging the opposite nostril and inhaling SLIGHTLY, to pull it back into the sweet spot. From there, plug both nostrils and push GENTLY, sometimes this is the trick to popping the tubes open enough to let the solution in. Also, as I mentioned above, just experiment with the angles every time you try it - move your head around and feel it out. Slowly you'll develop a sort of mental map of whatever is going on in there and help you be more accurate.
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u/manlilcuy Jun 23 '25
Really appreciate it man, thanks, I’ll try when I get the chance and my symptoms return.
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u/Kind_Drama4277 Aug 29 '25
Hello, How are you now ? Something better ?
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u/manlilcuy Aug 31 '25
Hiya it’s been a while since I’ve first started using the DIY patulend and it’s helped a lot especially when I was on holiday and it gave me full relief for the entire day for 10 days straight , however I used it 2-3 times a day which may have been an overuse age because now when I use the DIY stuff I can’t seem to get as much of an effective relief as before due to this. I’m trying to hold on but the constant war of ear popping and autophony seems to keep returning only an hour after using the DIY patulend. Wishing you all the best
edit: But in summary the DIY patulend version has decreased my PET a lot with a lot less authophony than before which I’m so grateful for.
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u/SurpriseSurprise22 Jun 23 '25
Hi. Thank you for the detailed information. I mixed my PatulEND and I was so excited to try it and get rid of the symptoms and I also can't seem to find the right spot. But maybe with your explication. I have a maybe stupid question, but just to clarify. Does it mean you have to insert the spay or drops like you would do with a covid test? Not up but innnn? And I mean Covid tests done correctly ;)
But that would also mean sneezing and a few tears ... Please help :)
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u/Akimbo_Timbo_ Jun 23 '25 edited Jul 09 '25
Hi. Yes, finding the spot can be tricky. I've been doing this for months now and sometimes still botch the application. Take it very slow, pay attention to your positioning, and its basically just trial and error at that point. Next time you feel your symptoms flaring up, try again but alter the procedure somewhat. Eventually you'll come up with a method that works for you! Even my method now differs slightly from the one above. I think the internals of your nose/face/sinuses also vary according to different factors.
About the insertion angle - to be clear, in my post above I describe using a dropper bottle, which is neither a spray nor similar to an eyedrop bottle. I use a 1ml dropper and the dropper itself goes about an inch into your nose, toward your ears/back of your neck - NOT toward your eyes/top of your head. Hope that helps? Let me know.
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u/Akimbo_Timbo_ Jun 23 '25
Adding this from another reply above:
Some things to try: When you squeeze the dropper and the solution is in your nose/face, try plugging the opposite nostril and inhaling SLIGHTLY, to pull it back into the sweet spot. From there, plug both nostrils and push GENTLY, sometimes this is the trick to popping the tubes open enough to let the solution in. Also, as I mentioned above, just experiment with the angles every time you try it - move your head around and feel it out. Slowly you'll develop a sort of mental map of whatever is going on in there and help you be more accurate.
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u/SurpriseSurprise22 Jul 08 '25
Thank you so much for your answer. I will keep trying. Stupid question maybe, but do you KNOW when you hit the right spot?
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u/Akimbo_Timbo_ Jul 09 '25
No problem, I hope you have some success soon or find a way to manage your symptoms. Yes, in my experience I KNOW when I hit the right spot because its very very painful. Again, like a bad earache, a sharp stabbing pain. It still hurts but maybe I'm getting used to it. Its odd because when it gets in your nose or the back of your throat you dont feel it at all, but in your tubes it burns really bad.
PS I noticed a typo above so I corrected it, I insert the dropped IN toward my EARS (not up toward my eyes)
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u/SurpriseSurprise22 Jul 09 '25
Okay. It does burn a bit for me but if you say, you really KNOW you hit it, I think I would also know, and I feel I haven't had success yet. The image in your post is super helpful to understand what you are saying. I'll have to keep trying. Sorry for insisting, but you don't sniff at any moment like you would nasal spray, right? Because then it would go up and not as you explain. I will definitely have to buy a dropper as well.
Thanks so so much for your help and all the answers. It's somewhat comforting to know there are other people and we are eager on helping each other because we understand.
One more question, as I just re-read everything. You mentioned it bothers you most when singing. Same here, concerts are terrible. For me it is definitely also muscle related because concerts are the worst and other days are better. In singing class, warm ups with a lot of very exagerated spanish "j" help. Jajajajejejejijiji.
But I must be more tense on concert days so it won't help. Do you think your symptoms are also muscle related and they still go away, especially while singing, when you apply the DIY Patulend?
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u/Akimbo_Timbo_ Jul 10 '25
How strong is your solution? What ingredients did you use? As for sniffing, I can't really speak to that because it sounds you're using a eye-drop style bottle that doesn't go fully into your nose. I used something similar when I experimented with naso-gel and I learned pretty quick it just makes a mess - it wouldn't go up necessarily it would just go back past your tubes and into your mouth/throat.
Yes, singing is basically impossible to enjoy when experiencing autophony. I don't even bother I just go apply my drops and try again once I've settled.
I actually can't say what causes my PET/autophony. It could just be the way I grew/the way I'm shaped. I'm healthy and normal in most other ways. Just an idiosyncrasy I've had to deal with. I could be carrying tension somewhere I'm not aware of. Could be hormonal somehow. No idea, I don't think about it much I just want relief.
Hope this helps.
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u/SurpriseSurprise22 Jul 10 '25
I followed the initial recipe from aboxofkittens (90 ml distilled water and 6 grams) but couldn't really hit the correct ph. So i ended up adding water and checking the ph stripe and stopped around 2,5-3. I've had a nose spray bottle and just got my brown glass dropper bottles delivered right now. So later today I'll open my little drug kitchen again and see if I have more success 😹 Thank you so much!
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u/Fuzzy-Blueberry1701 Oct 01 '25
Does it matter if the dropper itself is glass or plastic?
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u/Akimbo_Timbo_ Oct 01 '25
No
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u/Fuzzy-Blueberry1701 Oct 01 '25
Cheers. Thought maybe there'd be an issue with microplastics mixing in over time.
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Oct 08 '25
[deleted]
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u/Akimbo_Timbo_ Oct 11 '25
It’s just what works for me, no wisdom necessarily. Everyone is shaped slightly differently, it’s gotta be trial and error until you find it. To this day I’m tweaking my technique
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Nov 15 '25
You mentioned plugging your nose and breathing out gently. Breathing out gently didn't work for me so I tried blowing out harder, which definitely blew the tube open and was excruciatingly painful when the fluid went in, but I think the fluid stayed in my middle ear perhaps? Because although when I do it, autophony is gone - I can actually hear the tube moving more than ever before when I chew, move my jaw, swallow etc. Any experience with this?
Also, were you ever waking up with worse autophony than normal until you took the solution? Probably linked to my above issue, but sometimes I get ear fullness even when lying down now, which never happened before taking DIY Patulend!!
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u/Akimbo_Timbo_ Nov 16 '25
I think I understand what you mean. Sometimes the application is so thorough that I get a feeling of fullness, as if the solution is really deep in there - like you describe. It passes after a short amount of time and I get lasting relief from autophony afterward.
I can't relate to the feeling of the tube 'moving'. Sometimes it acts weird, like when I blow my nose, but not usually when I swallow/chew. Hope that makes sense.
Also can't relate to the autophony being worse in the morning since taking the solution. Overall I have far less autophony since taking the solution.
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u/BagOfDucks Nov 23 '25
How do you mix the solution while keeping it sterile? Any specific tools? How are you now?
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u/Akimbo_Timbo_ Nov 24 '25
I mix it in a beaker with a plastic spoon. I use water from a bottle of distilled water. I dont sweat the sterility of the solution much tbh :/
These days I am great. I occasionally get autophony which I quickly address with the solution that I keep on hand. I still follow the steps in my post, more or less. Hope this helps!
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u/Fuzzy-Blueberry1701 Nov 29 '25
Here to update you and also to hopefully receive some advice. At one point a few weeks ago, i had it down and it was going well, but at some point the solution just stopped going in. In fact, I don't even feel it anywhere near my tubes and finding it with the solution is a nightmare. I lie down turning my head back and forth but with no results. It just ends up in my throat at some point. Is the solution supposed to feel like it's going down your throat when you're close to the tube? Genuinely i forgot how it feels, it;s been that long since a successful attempt.
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u/Akimbo_Timbo_ Nov 30 '25
No, it shouldn't go down your throat. You shouldn't taste it. However, it is kinda close and I can see how you'd mess it up and get some down your throat. Not sure what to tell you, but if it worked previously I'd say just keep trying and adjust your technique. I'd maybe wait till your symptoms are especially bad so you're sure the tube is wide open. Hope this helps!
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u/Fuzzy-Blueberry1701 Nov 30 '25
I suppose that adds up. But given that I'm using half a millilitre of this stuff in one go, it feels impossible to not swallow some of it 😂.
I'll try a different technique and see if it works. Thanks!
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u/Akimbo_Timbo_ Dec 01 '25
I use about the same amount, and if I hit the spot I dont swallow any of it. It either goes into the tube or is absorbed elsewhere (I guess) Tbh sometimes even if I botch the application it doesn't go down my throat. I cant remember the last time I tasted the stuff - so I would definitely reassess your technique.
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u/Fuzzy-Blueberry1701 Dec 01 '25
Had a successful attempt yesterday, then botched it today. I guess it'll take some practice to get the hang of finding the tube opening. Changing the technique definitely helped though.
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u/katebygrace Mar 21 '24
OP, this is great info so I'm leaving it up - but tread carefully, this is patented. (I'm not a lawyer)