Something good happened................ - Tinnitus UK

Tinnitus UK

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Something good happened................

Davidus profile image
25 Replies

Hope all is well! It has been a long week, made it to the Neurologist and he has a battery of tests that he wants to perform, several tests that the first doctor missed. So no real news to report.

Except I did purchase a set of Aftershokz Aeropex open-ear wireless waterproof Bone Conduction headphones and they have made a world of difference. Your probably familiar with them, because when I was doing research about them they were referenced in some information I came across on the BTA site, but if by chance you aren't, you do not put them in your ears but on the cheek bone and then I have a wonderful distraction from the T and can still have a conversations with people and be aware of my surroundings. They are the most unusual headphones and I do recommend them to anyone that suffers from T.

It has been three days and I posted spurdog1 about this information on day one, but I waited a few days to post here because I wanted to give a little more feed back about these unique (to me) headphones.

While wearing them I feel like I've recovered some of my sanity, and at the same time when you have to recharge them (8 hours later) I feel as though the T is worse than before and I feel that I didn't realise how bad the T was, again as in my previous post and responses, I do want peace and quite, but since that is hard to achieve I will take take this little pleasure and wear these headphones. I have actually worn them while sleeping and they are waterproof. Keep in mind that even though they are waterproof, that is primarily for the purpose of sweating and shower, they will not work if you are submerged in the pool.

They are totally amazing though as they are ergonomic, so they fit fairly well for daytime activities and I adjust my head on my pillow for sleep time. I picked up one set and then went back at the urging of my wife to purchase a second pair so that I can swap them out at a moments notice.

Off to MRI's this week and other scheduled appointments starting later this week.

Thank you to all from across the pond,

Davidus

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Davidus profile image
Davidus
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25 Replies
rabbits65 profile image
rabbits65

Davidus. . Thank you for an interesting post and your very helpful information . May I ask you where do you live? Or should I say where are you from please.

Davidus profile image
Davidus in reply to rabbits65

Dear rabbits65,

Tampa Bay USA is my home, as many say I live in Paradise, but with T it can be considered that I live in hell, but with the time difference between the UK and here there are times that I'm responding to people from abroad and then going to bed only to rise and shine and possibly see lovely responses from across the pond,

The point of my writing the all above information is that after I wrote the "Something good happened" post is I went to bed and something good happened again, this was one of the first nights in eleven months to sleep through most of the night. I think I would have slept straight through the night if my thoughts wouldn't have been dancing with joy over this new discovery, so I'd actually wake up through the night and smile at the fact that something was working.

IF ANYONE TRIES THIS: So far I've personally been playing the headphones at the lowest volume I can and then raise the sound as necessary to compensate for the ringing.

Interesting situation with the Aftershokz, they send you two power cords, a nice pouch to store your gear in, and of all things a pair of earplugs for when you want to close off sounds all together, well I thought I'd just use my fingers as a sort of a spur of the moment ear plug and it sounded like being at a symphony concert with the Sirius XM channel I was listening to, sheer joy!

Sorry to ramble on to a short Q&A that you gave me but I wanted to enter more supporting information as this hopefully will bring some relief to other ears! Of course I'm not saying this is as good as complete silence, but it is a substitute for total insanity, cheers from Florida!

Davidus

PS. Please note: There are headphones that are available on other sites like Wish and Amazon that not only cost much less but some sites that cost much more, so I consider mine to be mid-range, of course be careful when ordering so your electrical unit matches your electricity needs to plug it into the proper outlets in your part of the world. My wife and I like to support family ran stores so I happened to get these at a running store because my wife needed some special shoes for her work, but we are not runners.

rabbits65 profile image
rabbits65 in reply to Davidus

I’m in the U.K. I’m not sure if we can get them here , so pleased you’ve found success and thanks for replying . Don’t worry about time difference because we still pick it all up at some point. I play scrabble with someone in Canada ok .

Davidus profile image
Davidus in reply to rabbits65

rabbits65,

Yes you should be able to get them in the UK here is a link I saw when researching, it's the link that made me think you all knew about it, so here is the link: tinnitus.org.uk/aftershokz

But there are many brands, prices from one end of the spectrum to the other, just make sure they are Bone Conduction headphones, have good battery time, are returnable if they are not comfortable, or returnable if they are not any good! I hope you try them out!

Davidus

rabbits65 profile image
rabbits65 in reply to Davidus

Thank you Davidus very much

Spurdog1 profile image
Spurdog1

Well done Davidus. Such a positive stride. We can feel your positivity.

Davidus profile image
Davidus in reply to Spurdog1

Dear Spurdog1, thank you for leading the way on positivity! Thank you for rooting me on, it is sincerely appreciated!!!

beaverwood profile image
beaverwood

Fantastic to hear you so upbeat, we need more of the positive comments to keep us hopeful, rather than the constant "there is no cure and learn to live with it" line. Hope the headphones keep you sane ..

Davidus profile image
Davidus in reply to beaverwood

Dear beaverwood,

Well I'm up a bit early as my youngest little girl ( Sophia the basset hound) wanted me to get up and take her out to go potty. She is such a joy to my wife and I but I noticed a couple message notices and thought I'd check them out. So thank you beaverwood for your reply.

I have had a teaspoonful of sanity restored in my brain and will continue this as some sort of self induced therapy to work myself up to at least a cup of brain cells getting some type of recovery to normalcy that I haven't had for a period of time.

So, welcome to "upbeat" as this journey that started by an uninvited hit in the rear end is now having a rising Phoenix situation as feel I am rising from darkness to light.

Davidus

Yoyogirl123 profile image
Yoyogirl123

I’ve got the Aftershokz Trekz Air, which are just a different model but the same thing, they truly are brilliant. I forget about my T when I’m wearing them.

I’m in the U.K. and got mine from the Aftershokz website, they have good offers from time to time.

Davidus profile image
Davidus in reply to Yoyogirl123

Dear Yoyogirl123,

Your definitely one up on me, I never knew these headphones existed, and I had a history of employment at one time in the broadcast industry where headphones were your lifeline to performing on the radio. But that was many years ago in an industry that has changed how it broadcast and how people receive the signal, hence so has the headphone, what a wonderful piece of equipment you and I have come across.

Davidus

emmakt_ profile image
emmakt_ in reply to Yoyogirl123

Hello - really interesting to hear about the headphones working so well for you, how do they work, do they play white noise which masks your T?

Yoyogirl123 profile image
Yoyogirl123 in reply to emmakt_

They’re just normal wireless headphones that play whatever you want, but they sit in front of your ears, almost like tiny speakers, so you don’t have anything actually going in your ear canal.

Bone conducting earphones
emmakt_ profile image
emmakt_ in reply to Yoyogirl123

Ah great thank you - how do you forget about your T when you're wearing them, do you play music or white noise?

Davidus profile image
Davidus in reply to emmakt_

Em,

It's all in the volume, I start out at a silent level and work my way up to a balance between T and music or white noise.

But I want to tell you about my experience with a download to my phone with a tinnitus website that had a free download of several white noise options and also offered sounds for you to compare your T sound to and then they gave me some type of analysis of the information I gave them to come up with some type of reason for why I have T, but they neglected to ask if I had been a car wreck, all the questions were about other health matters.

So back to the download, I did it and this was before with in the ear headphones, but the result I'm sure would have been the same: The download is on a loop and when the loop ends it starts over, but somehow at the end of the loop it would do something to my mental processing in the brain and I would wake up gasping for breath and terrified me as if I was being chased by the devil or something like that....

So, the mind is a powerful thing, and I try to ignore the T when I'm using the headphones and it actually works out pretty well so far. Do I still have my moments were I'm still disturbed from the T absolutely, particularly when I only had one set of Airshokz, so I went an picked up another.

Ohhhhh, special note: When wearing them I have noticed that I get much more battery time when I do NOT have interruptions on the bluetooth, i.e. some places I go to seem to have technology that interrupts the bluetooth and disconnects it from your phone, causing me to get out of the area that has that capability (technology) and then reconnect. But that seems to take away from the power (battery) and I have to switch to my other set. But that has only happened to me at certain department stores, dut the same department stores every time.Otherwise my model says battery last eight hours and I have been getting 10 to 12 hours.

Davidus profile image
Davidus in reply to Yoyogirl123

Yes that photo is correct, and of course that is not me in the photo, or your screen would have cracked!

But that is the beauty of this device! I can hear my surroundings and tone down the T all at the same time......

emmakt_ profile image
emmakt_ in reply to Davidus

Thank you so much, much more clued up now and I really appreciate your comprehensive answers. You've given me hope when I had none.

Davidus profile image
Davidus in reply to emmakt_

Stay in touch, we will all work this out together.... somehow someway, Davidus

woodman72 profile image
woodman72

Thanks for telling us all about these, they look really interesting. I'm not a fan of bluetooth because I'm not sure about wifi going towards your head, but they do an MP3 option which might be good. What do you listen to at night ? How bad is your T ? I sleep ok at night now (after a couple of rough years) and I can't hear mine when I'm driving . Maybe some neutral sounds like waves or rain might work. Glad you've found some relief.

Davidus profile image
Davidus in reply to woodman72

Dear woodman72,

I always wanted a MP3 but never got around to it, but good to know, thank you! I just have to study up on how to load it with music or white noise.

I'm not weary of the bluetooth / wifi going towards my head (brain) because they tell me there's not anything there, but actually our bodies are being bombarded by signal and frequencies all the time so I personally am not concerned. But I can appreciate that you are concerned and I respect that.

What do I listen to at night? Fortunately back in 2007, we had bought a car that offered Sirius for a short period of time for no charge, but after the introductory period expired, I went to my local Sirius shop and found out that they were offering for a limited time "lifetime subscriptions" so I jumped on that and bought it for my wife for her birthday. Long story short, that is my source of sound for the night, so it is usually only instrumental, I just want that basic instrumental sound flowing through while resting. So my channels will be playing smooth jazz or I'll switch to what we call "elevator music" or symphony.

As for playing vocals I stopped doing that because my sleep was getting interrupted either from songs that had a vocals doing notes that were irritating or would get to loud, or worse yet I would start singing along. Sorry that you had a rough couple of years with T, I'm just am just a little over a month away from the one year mark and it has not been easy.

White noise is another option, but regardless of what I listen to while resting / sleeping it has to be low, and it must keep a fairly even volume throughout the session, and it has been doing fairly well as long as I don't try new channels at bedtime that haven't been proven to keep that steady flow of pleasing sound.

How bad is my T: It's horrible I have never had such a horrible episode with anything like this that or anything else. I feel that it is amazing that someone can't be near me and hear it, I realise that they won't but unlike you I just about lose my mind when driving by my self. But now with these headphones on I can drive and have relief. Someone might say just play the radio in the car , I hardly ever listen to the radio in the car, but I am now listening to Sirius because I can control the volume exceptionally well and the channels I can deal with.

But you are correct about sounds of waves and or rain as it is very soothing. So now you have me wanting to get a MP3 and figure out how to load it.

Davidus

woodman72 profile image
woodman72 in reply to Davidus

Hi Davidus, when you say they tell you there is nothing there, do you mean there are no waves or that there is nothing in your head!! It reads both ways. Did make me laugh though!😅 I tried listening to the radio at night but the changes of music kept waking me up. I'm like you, I have no idea how to download mp3 files but my son can show me. I did read that it is better not to try to completely mask the sound of the T all the time because this may prevent possible habituation . You say it comes back very loud when you take the headphones off, so does this reduce after a while? Do you know what caused your T? Wifi close to your head probably isn't a good idea, a lot of people use hands free sets and don't sleep with their phone next to the bed anymore. Probably still a minority but you could look that up, it's a real concern.

Davidus profile image
Davidus in reply to woodman72

woodman72,

I just found this at the Aftershokz website and thought of our conversation, I feel like a twelve year old just lost their job :)

Where do I get music for Xtrainerz?You must own the music to transfer the files to Xtrainerz. You can purchase music from Amazon, iTunes or Google Play.

How do I upload music to Xtrainerz?

Once music files are downloaded to your computer, insert your headphones into the USB charging cable, and the charging cable into your computer. Once Xtrainerz becomes a hard drive on your computer, open the folder and drag-and-drop music files. Disconnect USB charging cable when transfer of files is complete.

How do I remove songs from the device?

After removing songs from Xtrainerz drive, empty your Mac's trash can while Xtrainerz are still connected to your computer. In Finder, safely eject Xtrainerz to remove the files from your headphones.

What type of files will Xtrainerz accept?

Xtrainerz supports MP3, WAV, WMA, FLAC, and AAC formats.

User Guide

You can view the user guide for Xtrainerz here.

emmakt_ profile image
emmakt_

Hi Davidus. Thank you for sharing your experience, it's so comforting to hear that you have found something that is so helpful.

I've started experiencing tinnitus over the past week which is 24/7 and high pitched and am really struggling.

I wanted to ask about the headphones - do they play white noise which then helps to distract and you're able to have conversations?

If you also have any other tips from your experience of how best to cope with T please do let me know.

Em

Davidus profile image
Davidus in reply to emmakt_

emmakt_,

You sound like me 24/7, and it is (or was) a horrible struggle! But the headphones do help extremely. As for playing "white noise" you can make that happen by getting the MP3 version that woodman72 mentioned in a reply to this page of post, and if your like woodman72 and I you will only need to get a 12 year old to program it, I am very experienced in needing 12 year old's to program certain tech devices; and they'll usually do it for free :)

So Em, the tips I have 1) listen to some of the advice some of our associates on this BTA site have for you but weigh it out for the good, the bad and the bogus people who use this site as a ploy for their schemes to scam you into buying something that has a potential of being fake!

As for myself, I was fortunate to have my wife happen to come upon a retailer that not only had this product, but totally stands behind the Aftershokz headphones and will refund the price no questions asked.

Tip 2) Because the MP# is not getting signal from bluetooth, you will be able to swim in them and continue with your use uninterrupted. My set; Aftershokz Aeropex, are waterproof and I have done just about everything in them except swim.

So upon the very first time of laying down with my head on the pillow; for one second it was awkward, realizing it probably would be I had additional pillows and a small bolster pillow ready to go, and if you don't have a neck pillow/bolster just take a soft towel or blanket and roll it up and place it in a pillow case for temporary use. But by being prepared I didn't have to get back up. I was actually able to sleep peacefully and only woke up because I was so tickled ; like a child on Christmas eve or I assume Boxing Day!

I have an electric lawn mower, so the noise from it is very low where the tinnitus is louder that the mower, well these headphones conquered that, I work in my office and at times I'm all alone (more often alone than not) so these headphones are a life saver. So, sllep time any time because of receiving the sound through bone conduction you can use them anytime.

Now for the bad side, well it's not the cure, if I take them off the T is still there obviously, but as I was driving home a few minutes ago, I was thinking about this very subject, cure, no cure, and I had to smile because I thought I'm a whole different person compared to before. So like so many things in life there are sometimes trade offs and compromises that must be taken,

All I can really say is it's up to how you feel wearing them, and don't be self conscious with them on they are a tool you can use without being judged. Some people are so concerned by what they look like doing this or that, and some people on the other side might make you feel like you have three eyes and two heads, but if you see some other people who just let it fly with hair dye and body art and body jewelry, then you'll know why this is not something to be concerned about.

Em, I'm sorry to be so lengthy, but I appreciate your post and hope this is of some use to you!

Sincerely,

Davidus

emmakt_ profile image
emmakt_ in reply to Davidus

Thank you so much for the detailed reply, I really appreciate it. I'm just trying to understand how the headphones work, when you go to sleep what are you listening to on the headphones? And what do you listen to during the day? Or do you just wear them and don't play anything and they help with being able to hear conversation / toning down the tinnitus? Sorry probably just being a bit stupid!

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