Tinnitus who suffers from it

RxR · 28 Oct 2020 at 01:24

Fwiw the relieving jamming app I used (mentioned also in TIAM in more detail) was:

Keuwlsoft Dual Channel Function Generator

a free, no-ads app from the Google app store.

More to the point, it reduced the volume of my tinnitus for up to 15 minutes after 1 minute of use. = My first gain of control over tinnitus volume in 5 years since onset.

thedoc46 · 28 Oct 2020 at 10:52

Bassmansam said:
https://www.irishtimes.com/business...hows-significant-results-for-lenire-1.4375561

Anyone got a spare 2.5k to try this?

Yes except it cost me a lot more than that, as i live in the USA. so i had to fly back and forth 3 times to Ireland, as it wasn't available anywhere else. I was one of the very early adopters. Started treatment July 2019. Unfortunately after 3 months of treatment, and a reprogram of the unit, i gave up. it didn't help me. However i did chat to some others and it does help some. its by no means a cure. but it can help. It unfortunately did FA for me though.

The reason i went for this, is because bimodal stimulation is something the scientific community has been working on for the last 13yrs. Over in Michigan State University, and Minnesota they're in clinical trials with their units. Google Susan Shore. So there is scientific data behind this method. This company took their lead scientist over to their team and with less red tape in the EU, somehow managed to get their device out before the others.

Also google FX-322 this is another hopeful treatment in the works. However this works by re-growing the hairs in the ear, that may hopefully reduce or eliminate the constant ringing. FX-322 is meant for hearing restoration, rather than tinnitus, but the two are closely linked. So there is some belief that if they can restore the damaged hairs in the cochlear it may reduce tinnitus.

good luck all.

koolpc · 28 Oct 2020 at 14:29

I resigned myself to just living with it many years ago now. And my tinnitus is very loud!

LeMson · 28 Oct 2020 at 19:36

I've spent most of the day without it or 1 or 2/10 on loudness scale, really hard to tell, don't know if I'm coming or going with it after 3 weeks with it and last night. It seems to have gotten worse again over last hour

Mobius 1 · 28 Oct 2020 at 20:14

LeMson said:
I've spent most of the day without it or 1 or 2/10 on loudness scale, really hard to tell, don't know if I'm coming or going with it after 3 weeks with it and last night. It seems to have gotten worse again over last hour

Usually once it starts setting in there’s not much you can do other than try to cope (try sleeping with a fan on at night to drown out the noise of the hiss/whine) I’ve had it as long as I can remember. I used to think it was the sound of silence. I’m so used to it now it sends me to sleep. Edit. Mine is equal and same tone in both ears. Same volume too. Thankfully I guess

Vimes · 28 Oct 2020 at 20:32

If I need to be distracted when I'm trying to sleep I will listen to an audio book with a headset on. That I find helpful when it can be particularly bad.

LeMson · 28 Oct 2020 at 21:16

Mobius 1 said:
Usually once it starts setting in there’s not much you can do other than try to cope (try sleeping with a fan on at night to drown out the noise of the hiss/whine) I’ve had it as long as I can remember. I used to think it was the sound of silence. I’m so used to it now it sends me to sleep. Edit. Mine is equal and same tone in both ears. Same volume too. Thankfully I guess

It's back down to 2/10 but my ear is feeling very full at the moment, I feel something is happening with all the changes over the day, maybe the antibiotics never got rid of the infection or I'm losing my mind

I honestly feel for anyone with this, I thought my other health problems were bad, but tinnitus sucks, gonna donate some money to a tinnitus charity

Rofflay · 28 Oct 2020 at 21:26

Mobius 1 said:
Usually once it starts setting in there’s not much you can do other than try to cope (try sleeping with a fan on at night to drown out the noise of the hiss/whine) I’ve had it as long as I can remember. I used to think it was the sound of silence. I’m so used to it now it sends me to sleep. Edit. Mine is equal and same tone in both ears. Same volume too. Thankfully I guess

I have to use a fan or i am drove mental all i would hear is the drone of tinnitus. But the fan is an amazing thing for relaxation so really even though my tinnitus is bad it has been ok.

Where Tinnitus for me really is bad is when i want to sleep somewhere without my fan. Imagine not being able to go camping, Or go on holiday or honeymoon unless you got the fan. Also what about a partner? They have to buy into it as well. Tinnitus sucks.

chrcoluk · 28 Oct 2020 at 21:34

I had symptoms for a day or so and it drove me nuts, I went to an out of hours GP, who commented why I seeked medical help so early, it was explained I would have to have it for at least 6 months before a chance to even get referred, so I was feeling pretty bad after that consultation, luckily for me it stopped the next day.

Since then I have been more careful, lower volume on music, and anything on headphones lower volume as well. I expect it will come back at some point.

Tephnos · 28 Oct 2020 at 21:39

chrcoluk said:
I had symptoms for a day or so and it drove me nuts, I went to an out of hours GP, who commented why I seeked medical help so early, it was explained I would have to have it for at least 6 months before a chance to even get referred, so I was feeling pretty bad after that consultation, luckily for me it stopped the next day.

Since then I have been more careful, lower volume on music, and anything on headphones lower volume as well. I expect it will come back at some point.

Yeah, the wait is stupid, because for things like sudden hearing loss you need to be seen *immediately* and go on a course of steroids, as it is the only way to get your hearing back. 6 months and it is far, far too late.

Mobius 1 · 28 Oct 2020 at 21:56

Rofflay said:
I have to use a fan or i am drove mental all i would hear is the drone of tinnitus. But the fan is an amazing thing for relaxation so really even though my tinnitus is bad it has been ok.

Where Tinnitus for me really is bad is when i want to sleep somewhere without my fan. Imagine not being able to go camping, Or go on holiday or honeymoon unless you got the fan. Also what about a partner? They have to buy into it as well. Tinnitus sucks.

I’ve taught myself to think of my tinnitus as a “fan” because mine is monotone, medium pitch, it’s easy to drift off to. Thankfully it’s not pops or intermittent hisses, yet. I couldn’t cope with that. But yeah, I can see how it can limit getaways such as camping !

for example my tinnitus is exactly the same as Sound 9 / Voilet Wave, on this video..

Rofflay · 28 Oct 2020 at 22:03

Mobius 1 said:
I’ve taught myself to think of my tinnitus as a “fan” because mine is monotone, medium pitch, it’s easy to drift off to. Thankfully it’s not pops or intermittent hisses, yet. I couldn’t cope with that. But yeah, I can see how it can limit getaways such as camping !

for example my tinnitus is exactly the same as Sound 9 / Voilet Wave, on this video..

I get the high pitch 24/7 even now i can hear it i rarely get pops or pressure changes maybe twice a year but 24/7 the beeping noise. Its manageable right? But theres a complete lack or help or empathy for it which sucks.

Mobius 1 · 28 Oct 2020 at 22:06

Rofflay said:
I get the high pitch 24/7 even now i can hear it i rarely get pops or pressure changes maybe twice a year but 24/7 the beeping noise. Its manageable right? But theres a complete lack or help or empathy for it which sucks.

I’ve had it since I can remember, so it’s just part of my life which is on ignore for the most part. There will be a cure, someday. Just a matter of when.

panthro · 29 Oct 2020 at 07:53

I suffer from it. Its hereditary apparently and some of my aunties suffer too. I get a whole range from low humming sounds to very high pitched sounds. I've had my hearing tested at hospital and they were happy I'm not losing my hearing. They also MRI'd and said it was all clear. Just one of those things unfortunately.

About a year ago the humming just woke me up one night and it has, never really gone away. However when it gets really bad at night I sometimes will it to go away and it dies down. Not completely but it helps. I have no explanation for that but it the mental state of wishing it to go really works. Other than that I sometimes use white noise if it's particularly bad. Don't let it ruin your life, background noise helps me a lot.

Bassmansam · 29 Oct 2020 at 11:24

panthro said:
I suffer from it. Its hereditary apparently and some of my aunties suffer too. I get a whole range from low humming sounds to very high pitched sounds. I've had my hearing tested at hospital and they were happy I'm not losing my hearing. They also MRI'd and said it was all clear. Just one of those things unfortunately.

About a year ago the humming just woke me up one night and it has, never really gone away. However when it gets really bad at night I sometimes will it to go away and it dies down. Not completely but it helps. I have no explanation for that but it the mental state of wishing it to go really works. Other than that I sometimes use white noise if it's particularly bad. Don't let it ruin your life, background noise helps me a lot.

Sounds similar to me except i do have mild hearing loss at a couple of frequencies due to going to gigs and playing in bands when i was younger without ear protection. Stress definitely makes it worse for me aswell.

panthro · 29 Oct 2020 at 12:01

Bassmansam said:
Sounds similar to me except i do have mild hearing loss at a couple of frequencies due to going to gigs and playing in bands when i was younger without ear protection. Stress definitely makes it worse for me aswell.

I think a lot of time spent in clubs and gigs at the front has definitely taken its toll on me too. Definitely it will be one thing I will warn my kids against. One of my colleagues has suffered severe hearing loss due to exposure of loud noises at clubs and DJing.

If things are really bad for you, joining a support group would really help. So many people suffer with it and it's important to know you're not alone in your suffering. Just talking about it to other people that understand will help you massively.

Bassmansam · 29 Oct 2020 at 13:48

panthro said:
One of my colleagues has suffered severe hearing loss due to exposure of loud noises at clubs and DJing.

If things are really bad for you, joining a support group would really help. So many people suffer with it and it's important to know you're not alone in your suffering. Just talking about it to other people that understand will help you massively.

Ouch, severe hearing loss is bad! Guessing he wears a hearing aid to get by?

im ok with it generally except for when it gets bad due to stress. But then i just put some pink noise on from an app to cover it.

LeMson · 29 Oct 2020 at 14:33

Urgent phonecall with GP, one side of my face now feels sore and heavy, tinnutis very loud at moment

Vimes · 29 Oct 2020 at 14:44

Bassmansam said:
Ouch, severe hearing loss is bad! Guessing he wears a hearing aid to get by?

im ok with it generally except for when it gets bad due to stress. But then i just put some pink noise on from an app to cover it.

Can relate with that.
Incidentally I started with a low dose Nortriptyline and have been on this now for a few months. What has surprised me is that as well as the neuropathic type of pain I was suffering quite badly with how much my tinnitus has improved. It has taken me a while to figure out the relationship with that daily medication and the overall improvements with my tinnitus. It hasn't gone completely but it has been quite minor compared to how bad it has been before the medication.

PC777 · 29 Oct 2020 at 14:57

Rofflay said:
I have to use a fan or i am drove mental all i would hear is the drone of tinnitus. But the fan is an amazing thing for relaxation so really even though my tinnitus is bad it has been ok.

Where Tinnitus for me really is bad is when i want to sleep somewhere without my fan. Imagine not being able to go camping, Or go on holiday or honeymoon unless you got the fan. Also what about a partner? They have to buy into it as well. Tinnitus sucks.

I don't have tinnitus but always use a fan or equivalent for sleeping, I've found a really good alternative to a fan to be white noise apps on your phone. Some nights you don't want a cold fan running or don't have to access to one, I've found free noise apps to be amazing in that situation. They offer a lot of different frequencies or natural sounds so it could hopefully help.

All South Park jokes aside I've found brown noise to be the best alternative to a fan for sleeping. I use the free White Noise Lite app, works great for me.