My British Tinnitus Association (BTA) Helpline Experience

[Robster]

Hi all,

I've been suffering with tinnitus since an extremely noisy head MRI in January. For the first couple of months my tinnitus followed a reasonably stable pattern, until it worsened 10 days ago. I have no idea why as I haven't use headphones/earbuds, been exposed to any loud noises or taken any medications. I couldn't get to sleep until 7am this morning due to the tinnitus and thought I would call the BTA Helpline for some advice...

I asked the lady I spoke to if she had ever come across someone with noise induced tinnitus who had ever had its volume increase for no apparent reason. She replied about how the volume of the tinnitus is dictated by how the brain perceives the tinnitus. I replied that this isn't a perception issue the volume has definitely increased (particularly in my left ear), she kept replying that it isn't a volume issue, but rather a perception issue. It was like talking to a brick wall.

I then asked if in her experience was it possible for noise induced tinnitus to completely go away. I know this is unlikely, but I had read a few cases on this forum and elsewhere where someone has had noise induced tinnitus go away after a number of months. Her reply was that yes it can go away when the brain filters it out; I replied that was habituation. Her answer was that habituation was the noise going away; I reframed the question asking if she had ever come across a case whereby tinnitus noise had gone away that wasn't habituation. She again said that habituation was the term for the tinnitus noise going away.

By this point I figured out she didn't have a great understanding of tinnitus and asked a simple yes/no question. I asked if she had tinnitus to which she replied - "I'm not prepared to answer that". It wasn't like I was asking for her name and address, I can't imagine for a second she has tinnitus as if she did she wouldn't have such a bad understanding of the condition.

I know the BTA are a small charity, but surely someone should never feel worse after speaking to their Helpline than they did before they spoke to their Helpline. I'm really struggling at the moment and thought they might be able to offer some practical help and advice.

This is more a question for the UK members of this forum. Was I just unlucky to have spoken to that particular advisor? Is it worth calling them again? What have your experiences been with both the BTA and their Helpline?

I'm really disappointed by what happened and am pretty disillusioned by the lack of understanding of the condition. I had heard of tinnitus before I had got it, but had no idea there was such poor understanding of it by those who are supposed to know about it. The GP and ENT (which I paid for privately) I've seen weren't much better than the Helpline advisor.

Any replies greatly appreciated. Thank you for taking the time to read.

 

[Chinmoku]

Even some neurotologists I consulted came up with the perception theory. I explained that I could detect a worsening because sounds that used to cover the tinnitus initially were not covering it anymore. The problem is the lack of an objective precise way to measure tinnitus.

If the BTA has disappointed you, you could try Action on Hearing Loss. For some reason they have gone back to their old RNID name. Some users here had found them to be more active than other charities but that was a couple years ago.

However, if even neurologists push the perception theory, you'll need some luck in finding an understanding receptionist.

 

[david c]

First of all sorry to hear of your tinnitus due to MRI. They can be crazily loud, I had one a couple of months ago and with double protection of muffs and earplugs managed to get through it but wouldn't have wanted it to be much longer.

Secondly, I'm sad but not remotely surprised to hear of your negative experience with the BTA, whose "helpline" left you feeling worse than before speaking to them. "Habituation" doesn't remotely mean that the sound just "goes away", as any of us who have habituated to tinnitus know full well and saying that clearly indicates that the BTA "advisor" you were speaking with doesn't know the first thing about tinnitus.

The BTA is a pretty poor organisation generally, they take donations from people who expect the money to be put towards curative research and have spent it over the years on CBT/TRT/Mindfulness "management" studies by a small group of cronies whose research largely duplicates each other. Probably the majority of their workers don't actually have tinnitus at all and that applies also to their helpline advisors. Little has changed, certainly not for the better, with this organisation over the years and probably the best thing you can do is ignore their advice and don't give them any of your hard-earned money.

 

[Robster]

First of all sorry to hear of your tinnitus due to MRI. They can be crazily loud, I had one a couple of months ago and with double protection of muffs and earplugs managed to get through it but wouldn't have wanted it to be much longer.

Secondly, I'm sad but not remotely surprised to hear of your negative experience with the BTA, whose "helpline" left you feeling worse than before speaking to them. "Habituation" doesn't remotely mean that the sound just "goes away", as any of us who have habituated to tinnitus know full well and saying that clearly indicates that the BTA "advisor" you were speaking with doesn't know the first thing about tinnitus.

The BTA is a pretty poor organisation generally, they take donations from people who expect the money to be put towards curative research and have spent it over the years on CBT/TRT/Mindfulness "management" studies by a small group of cronies whose research largely duplicates each other. Probably the majority of their workers don't actually have tinnitus at all and that applies also to their helpline advisors. Little has changed, certainly not for the better, with this organisation over the years and probably the best thing you can do is ignore their advice and don't give them any of your hard-earned money.

Thanks for your reply David. Yes unfortunately what you say seems to be very accurate. Such a shame that those of us in the UK don't have better representation for the issues we are dealing with.

Even some neurotologists I consulted came up with the perception theory. I explained that I could detect a worsening because sounds that used to cover the tinnitus initially were not covering it anymore. The problem is the lack of an objective precise way to measure tinnitus.

If the BTA has disappointed you, you could try Action on Hearing Loss. For some reason they have gone back to their old RNID name. Some users here had found them to be more active than other charities but that was a couple years ago.

However, if even neurologists push the perception theory, you'll need some luck in finding an understanding receptionist.

Thanks for the info, I'll check them out.

 

[Forever hopeful]

@Robster, I developed noise induced tinnitus in 2015 from a very loud AC/DC concert. Never knew the potential damage I could be doing to my hearing and mustard not wearing earplugs. I had no measurable hearing loss afterwards. It took almost two years, but it completely resolved once the hair cells recovered. My ENT told me to think of it as my hair cells being reeds in a pond that have become bent but not broken. Once they're broken and die you don't get them back and that is hearing loss. So she said it would take time for mine to heal and they did. Hang in there.

I am very sorry to hear that you acquired noise induced tinnitus from an MRI. I too need one of my head in another week. I am going to use an open bore machine, which is supposed to be much quieter than the traditional tube MRIs. Did you have double ear protection?

Sorry about the BTA. I live in the US and I'm not sure the ATA is any better. I just think there's a lot of misinformation out there.

 

[Robster]

Thanks for the ray of hope(pun intended) @Forever hopeful. No unfortunately I didn't have double ear protection, just the muffs. I had a chest MRI a couple of years before which wasn't that loud so I thought it'd be the same sort of volume as that.

The head MRI was much louder than the chest one and it consisted of four different scans. The first three weren't that loud, the fourth one was incredibly loud and I'm convinced the ear muffs weren't on my head correctly as when I moved my head slightly to one side or the other it would block out additional sound. The fourth scan only lasted a couple of minutes, but it was so insanely loud. I was just about to press the panic button (thumb was literally on it) as the sound was becoming unbearable when the MRI ended.

Ears haven't been right since. A bit worried as the tinnitus which I would say was initially mild-moderate has definitely become moderate and haven't had a good day for over a week now.

I've had an audiogram and apparently have above average hearing for my age(44) so hopefully the reeds are bent rather than broken. Really appreciate your reply as it has given me a little light at the end of a dark tunnel.

 

[Sevv]

Even a random nobody on Tinnitus Talk could help you more than the BTA if this is their standard of quality (and many members here could even put ENTs to shame with their knowledge).

 

[BrStan@]

Yes, I also had a very bad experience with the British Tinnitus Association. They don't do us any good. Spending money on tinnitus management via meditation is not worth it. I don't even know why they still exist. Maybe the poor people donate some money in a hope that they will spend it on research. Which of course doesn't happen.

 

[Chinmoku]

I think BTA helps mostly people with mild tinnitus. For these people, activities like mindfulness or CBT techniques may help. They also try to follow research into treatments, but we have to keep in mind they are a relatively small association. They are linked to historical researchers in the tinnitus world in Britain. These people can't do much against severe tinnitus despite having authored academic papers and monographs on tinnitus. I think we could realistically expect more in terms of campaigning from well-organized and well-funded associations, but the truth of the matter is that they are not well-funded and even if they were, they cannot help with advice, they are as powerless as the medical profession in general for severe cases.

However, they might at least know what to say over the phone, what happened to @Robster should not really happen. I could understand it more coming from a general helpline like the Samaritans or perhaps the NHS, and it would be wrong anyway, but coming from a tinnitus association this is not particularly reassuring.

The problem is always the same, the general population and even some people in these associations have no idea of the hell the most affecting cases subject people to.

One would think that after suicides like the Texas Roadhouse CEO and many other past cases people and associations would be more aware of the devastating impact of this condition, when severe, on people's lives. The sad hope is that with an increase in severe cases driven by COVID-19 induced tinnitus, research is finally becoming more active and awareness increases among the general population. Hopefully, BTA and ATA will take this sad opportunity to campaign more and bring the dramatic cases to the forefront.

 

[AliasM]

Calling it a perception issue is textbook gaslighting. All in your head, your reality isn't real.

I would have called it out I think.

 

[valeri]

BTA helpline...