Desensitisation Therapy

[Michelle Hopkins]

Hi Everyone,

I have had T for about 12/13 years but for the past few months it has gotten much louder! I haven't changed anything in my lifestyle so as to why it has spiked I still don't know!

Anyways I have started desensitisation therapy last Friday 9th Feb which consist of wearing small hearing aids which produces a sound therapy for my kind of T! I'm only wearing it for 3 hours a day which at times is a daunting experience.

I have noticed that since starting the therapy my T has gotten much louder and is noticeable in both ears whereas before it was more dominant in just 1 ear!

For anyone that has done this type of therapy is this normal?? I asked my audiologist today and he said it was probably just because of the newness of things and building it into my lifestyle! I don't know what to think as I've just started to use it but I'm concerned that it may be doing more harm than good!

Please help

 

[Michael Leigh]

HI @Michelle Hopkins

You have had tinnitus for quite a while and therefore well seasoned to the condition. Tinnitus doesn't usually get worse on it's own, something usually causes it. You haven't said what orignally caused the tinnitus. Exposure to loud noise is the most common cause. Although many other things can bring it on too.

Before starting desensitisation therapy, I would have liked to have seen you have tests at ENT. Hearing tests and MRI scan, just to make sure your auditory system is working correctly. If there is no underlying medical condition causing the tinnitus, then a referal to see a Hearing Therapist or Audilogist - in your case is recommended.

Your Audiologist giving you white noise generators, which is what you have and letting you get on with isn't really ideal. This therapy is a form of TRT but without the counselling. Some people may have success with this but ideally, a patient should have counselling with their Therapist too. Since you are using white noise generators alone, I think it's best that you introduce them to your auditory system slowly.

Start off by wearing them for just 1 or 2 hours then take them off for the same amount of time. Make sure when wearing them, the volume is kept slightly below your tinnitus. Over a few weeks slowly increase the wearing time until you are able to wear them for up to 8hrs or follow your Audiologists advice on total wearng time each day. At night they shouldn't be worn while you sleep. Instead, use a sound machine by your bedside to provide sound enrichment. Again, keep the volume below your tinnitus.

Best of luck
Michael

 

[Michelle Hopkins]

Hi @Michael Leigh

Thanks very much for your reply! I think my T is caused by hearing loss. I had an MRI scan many years ago when the Tinnitus first started...to be honest I presumed everything was ok as they discharged me from the ENT clinic. Do you think I should have another one? I had a hearing test when I went to the clinic.

When I put the devise in, the white noise is the 1st thing I can hear, then eventually the T! I'm not sure if it's just because the noise is new to me but there is something not right! I personally think it might be too loud. I'm thinking I should get a second opinion from another audiologist but I don't even know if this is possible. Last night was the worst night so far I've had since having T.....the sound in my right ear was deafening! I had to use the app I have downloaded on my phone to distract me from it! 2 hours later I finally got to sleep.

I was told to use them 1-3 (ideally 3) hours the 1st week, 3- 5 hours the second, then 6 - 8 hours after that. I usually put the device in on the morning, last night I put them in around 7pm as I only got home from work then! Took them out at 9.30ish pm....perhaps that the reason for the spike in my right ear last night?? I'm not getting any counselling with my therapist, I only thing I got was a name of an app to download which has breathing techniques on it!

I really don't know what to do for the best and am really freaking out

 

[Michael Leigh]

I really don't know what to do for the best and am really freaking out

HI @Michelle Hopkins

I will be honest with you. The way you have described what is happening to you makes me believe the current treatment that you're on isn't right for you or the way you have been managed by the health professional that you are seeing. This is just my opinion based on what you have told me. You have had tinnitus a long time and therefore experienced with it. I don't know where you live? I get the impression that you have gone to an independent Audiologist and not first seen at ENT for tests then referred to a Hearing Therapist or Audiologist for treatment.

If you are living in the UK. It is always best to be referred to ENT via your GP so tests can be carried out on your Auditory system. As I've said above, if there is no underlying medical condition causing the tinnitus then, a patient is usually referred to a Hearing Therapist or Audiologist for tinnitus treatment and management. There are a variety of treatment options usually available. In your case if hearing loss is present this could be causing the increase in the tinnitus, as hearing loss and tinnitus are closely linked.

In this case a patient will usually be fitted with one or two hearing aids. Over time the tinnitus will usually reduce due to the increase in sound delivered to the brain from the outside environment by the hearing aid/s. When hearing loss is present it can make the brain increase its internal volume control to hear sounds from the outside world. In doing so it will also increase its background activity and thus, tinnitus can develop. When the brain receives additional sounds from the hearing aid/s it will lower its internal gain and over time the tinnitus will be suppressed.

If the devices you were given by your Audiologist are just "white noise generators" and are not dual purpose units. By this I mean they don't also have hearing aids fitted within them? If you have hearing loss? Then what you have been given in my opinion, is not correct.

I think you should be properly examined by an ENT doctor then referred to a Hearing Therapist or Audiologist for tinnitus treatment and management. Treatment can be as follows: Hearing aid/s. Hearing aids with built -in white noise generators. Sound therapy, CBT treatment, TRT, Counselling, Mindefullness, Medication.

Please click on the link below and read my article: Tinnitus, A Personal View. It is quite long but please try to read it in full. Please feel free to ask any more questions.

All the best
Michael


https://www.tinnitustalk.com/threads/tinnitus-a-personal-view.18668/

 

[Michelle Hopkins]

hi @Michael Leigh

Yes I did go to a private audiologist that I came across on the Tinnitus website before going to an ENT department. I live in Northern UK. They had many success stories so I got really excited and booked an appointment. Do I just ask my GP to refer me to the ENT department? I went to my GP awhile ago and her response was that there was nothing she could do about it and basically I need to just live with it! The device I got from the audiologist is an actual hearing aid with sounds included with the hope that Over time the tinnitus will reduce in sound. It called a Primer hearing aid.

To be fair when I use the hearing aid it doesn't seem to do much for my hearing issue - again I don't know if I'm thinking this because the device is all very new to me and I need to give it more time to work. But I do know that my T has increased dramatically since using the device on the 9th Feb - This, I'm not imagining.

I have 6 weeks to use this device or get my money back (it was quite pricey) but because I have had my tinnitus for over 12/13 years the audiologist said that it could take a good year or so to notice any difference in the T volume level. I don't want to give up on this if its really going to work ( in time) but I equally don't want to keep using it if its going to make the T worse....which is what it is doing at this present time.

Thank you for the link you provided - it will make good lunch time reading

 

[Ambassador]

I wear Phonak hearing aids with two levels volume of white noise. When I need it I like to keep on the low setting but when I am really bothered by my tinnitus I will go to the high setting and at first my perception of it is that it is loud and if I think about it at all I start to hear my tinnitus competing for my attention. Once I get busy things settle down and I have been surprised at how often I completely forget I have my white noise on after it's been playing all day. I've had tinnitus for a little over 3 years and have gone up and down in levels of annoyance from almost none to a lot but the hearing aids give me some control and I am glad I have them. I seem to be in a cycle I can go months without using white noise and then 3 or 4 months of using is. As has been mentioned here, anxiety can play a big part in raising my awareness of my tinnitus, even when I deny that I am stresses I know it's lurking under the surface.

 

[glynis]

I have duel purpose hearing aids and mainly keep them on amplification but if I have no sound around me to amplify then I have an option for white noise.
Love glynis

 

[Michael Leigh]

Yes I did go to a private audiologist that I came across on the Tinnitus website before going to an ENT department. I live in Northern UK. They had many success stories so I got really excited and booked an appointment. Do I just ask my GP to refer me to the ENT department? I went to my GP awhile ago and her response was that there was nothing she could do about it and basically I need to just live with it! The device I got from the audiologist is an actual hearing aid with sounds included with the hope that Over time the tinnitus will reduce in sound. It called a Primer hearing aid.

To be fair when I use the hearing aid it doesn't seem to do much for my hearing issue - again I don't know if I'm thinking this because the device is all very new to me and I need to give it more time to work. But I do know that my T has increased dramatically since using the device on the 9th Feb - This, I'm not imagining.

Hi @Michelle Hopkins

Thank you for the additional information. Twenty two years ago, when I first got tinnitus and asked my GP to recommend a private clinic, as I was waiting a long time to get an appointment at NHS ENT. I was told that I would get the best help and long term aftercare under the NHS that no private practice in the UK can match for tinnitus treatment. I have found this to be true. I am still registered as an out-patient. I was recently fitted with two new digital white noise generators, that would cost over £2k privately to buy and this was FOC.

Private practice maybe perfectly fine for a quick fix but not for a long term condition like tinnitus. As soon as your six weeks trial is up and you decide to purchase your hearing aid with white noise generator, you are then on your own. You need proper aftercare. Hearing aids and white noise generators can become faulty after a while and may need repair or replacing. Under NHS Audiology you won't have any problems getting this resolved and at no cost to you.

It is your choice whatever you decide to do but if I were in your situation, then I would do the following. Go to my GP and explain about my tinnitus and ask, please can you refer me to ENT. I suspect your doctor would have taken things more seriously, had you returned more often saying that you're finding it difficult to cope with the tinnitus. She has a duty of care to her patients and knows full well, that once a patient puts in a request to be referred to a specialist, due to the fact that you have had tinnitus a long time, she has to comply. Not doing so could have serious repercussions. Please believe me I know what I'm talking about.

Some people don't know how to talk to their doctor and forget they are human beings just like you and I. Please understand I'm not referring to you. Some people have a demanding attitude which will immediately rub a doctor up the wrong way. I have never had a problem with any GP or ENT doctor. In fact they have gone out of their way to help me.

Once your GP makes the referral to ENT your appointment may take a while. There is nothing unusual with this particularly when dealing with tinnitus. Once you are in the system, things should go smoothly. Most importantly you will get the aftercare which is what you need: After tests are done on your auditory system a referral to Audiology to a see a Hearing Therapist or Audiologist for tinnitus treatment and management which I have mentioned in the previous post. Should any problems arise down the line with your tinnitus, you will be seen as an out-patient.

Wishing you all the best

Michael

 

[david c]

Hi @Michael Leigh

When I put the devise in, the white noise is the 1st thing I can hear, then eventually the T! I'm not sure if it's just because the noise is new to me but there is something not right! I personally think it might be too loud. I'm thinking I should get a second opinion from another audiologist but I don't even know if this is possible. Last night was the worst night so far I've had since having T.....the sound in my right ear was deafening! I had to use the app I have downloaded on my phone to distract me from it! 2 hours later I finally got to sleep.

I was told to use them 1-3 (ideally 3) hours the 1st week, 3- 5 hours the second, then 6 - 8 hours after that. I usually put the device in on the morning, last night I put them in around 7pm as I only got home from work then! Took them out at 9.30ish pm....perhaps that the reason for the spike in my right ear last night?? I'm not getting any counselling with my therapist, I only thing I got was a name of an app to download which has breathing techniques on it!

I really don't know what to do for the best and am really freaking out

Hi Michelle, I tried white noise generators a couple of years back for my tinnitus. They were no help for me at all and if anything only aggravated the sound - exactly as you are reporting. The evidence base for them being effective is actually extremely limited. Using sound "enrichment", such as a fan, sound machine or light music, in the background is a different matter and can be moderately helpful for some people. If you are not finding your white noise generators helpful and they are actually making things worse then I shouldn't continue with them.

All the best

David

 

[Michelle Hopkins]

hi @Michael Leigh

Thank you so much for all your help and advice. The cost of the device I currently have is £3500 (which is hell of a lot of money for me or anyone for that matter) so for the T to be flaring up already with only 5 days of using it just isn't right or fair to me. No Therapist was organised for me for counselling etc.

I am going to make an appointment to see my GP right away. Fingers crossed I can get referred pretty soon. This is something I should of done years ago but I always seemed to be able to manage my T but for the past few months it has been absolute torture.

I have read and printed out the article you so kindly gave me. I found it so helpful and even more very informative.

Thanks again for all your help, its really appreciated.

Michelle

 

[Swannys]

Hi @Michael Leigh just wondered if you could have a look at my new post on Tinnitus clinic, would be greatly appreciated

 

[Swannys]

@Michael Leigh https://www.tinnitustalk.com/threads/tinnitus-clinic.26912/

 

[Michelle Hopkins]

hi @david c

Thank you for your advice. I am going to make an appointment with my GP today. You mentioned that the white noise generators aggravated your T...did it return to "normal" (if it ever is classed as normal")?

Another audiologist called me today to advise to stop using my device until about Saturday or Sunday only if my T has reduced in sound. If not im not to use them and get in touch with them next week. All I care about at this moment in time is that my T reduces to the level it was before I started to use the device.

Thanks again

 

[david c]

hi @david c

Thank you for your advice. I am going to make an appointment with my GP today. You mentioned that the white noise generators aggravated your T...did it return to "normal" (if it ever is classed as normal")?

Another audiologist called me today to advise to stop using my device until about Saturday or Sunday only if my T has reduced in sound. If not im not to use them and get in touch with them next week. All I care about at this moment in time is that my T reduces to the level it was before I started to use the device.

Thanks again

Hi Michelle,

My tinnitus level did reduce somewhat after I stopped using the white noise generators - I'd persisted with them for some time and they were no help at all. Over the last few years my tinnitus has varied in intensity but I've never remotely been tempted to start using white noise generators again.

Best
David

 

[Michelle Hopkins]

hi @david c

Thanks for the info. I pray every night that it will return to its normal level of sound (as bad as it was then, this now is just torture).

Take Care
Michelle

 

[Aegaeon]

Hi Everyone,

I have had T for about 12/13 years but for the past few months it has gotten much louder! I haven't changed anything in my lifestyle so as to why it has spiked I still don't know!

Anyways I have started desensitisation therapy last Friday 9th Feb which consist of wearing small hearing aids which produces a sound therapy for my kind of T! I'm only wearing it for 3 hours a day which at times is a daunting experience.

I have noticed that since starting the therapy my T has gotten much louder and is noticeable in both ears whereas before it was more dominant in just 1 ear!

For anyone that has done this type of therapy is this normal?? I asked my audiologist today and he said it was probably just because of the newness of things and building it into my lifestyle! I don't know what to think as I've just started to use it but I'm concerned that it may be doing more harm than good!

Please help

White noise is known to cause this effect when hyperacusis/"reactive tinnitus" is present and the volume is not set properly. Maybe try switching to pink noise which is preferred by most patients for desensitization therapy. And I guess you should start with very low volume this time.

 

[Michelle Hopkins]

hi @Ambassador

Thanks for your comment. I am trying to find ways to reduce my anxiety and stress but its proving quite difficult at times. I find myself chanting in the mornings "Don't let this get you down, don't let this get you down" and there's people worse off out there than you.

It does help (sometimes)...

Take Care
Michelle

 

[Ambassador]

hi @Ambassador

Thanks for your comment. I am trying to find ways to reduce my anxiety and stress but its proving quite difficult at times. I find myself chanting in the mornings "Don't let this get you down, don't let this get you down" and there's people worse off out there than you.

It does help (sometimes)...

Take Care
Michelle

It's an evolution, stay with it.

 

[Michelle Hopkins]

hi @glynis

How are you? Thanks for the info.

I see from your profile pic that the cause of your T is from Menieres Disease. Can I ask how exactly you were diagnosed with this? I get dizzy spells along with my T. My GP told me I might have Menieres Disease. I'm not too confident as I was the one who mentioned it to her after googling my symptoms.

Thanks
Michelle

 

[glynis]

@Michelle Hopkins,

I started having vertigo attacks and motion sickness and bouncy vission and being sick and was fast tracked to ENT and put on medication and by then tinnitus started in one ear and soon both with the other symptoms.
Over the next year back and forth for tests and monitoring and got diagnossed with Menieres and put under a ENT Menieres specialist... had it 12 -14 years.
Love glynis

 

[Michelle Hopkins]

hi @Aegaeon

Hope your well. Thanks for the advice. I've never heard of pink noise...do you know any more about it? Ill have a look on google also.

I really do think the reason for my T being much louder is due to the volume not being correct in the devices.

Thanks
Michelle

 

[Michelle Hopkins]

hi @glynis

Gosh it sounds like you have had it all! I have suffered with Vertigo many years ago and was put on medication. Every now and again I get dizzy spells (I could be sitting down and all of a sudden the room would spin 360 degrees.) or if im returning to my desk at work, the room would take a few minutes to catch up to me.

I'll mention it to my GP when I go.

Thanks
Michelle