Reactive Tinnitus - anyone else experience this

[surviveT]

My T is very reactive and I have hyperacusis

I have to wear ear plugs and ear defenders out n about

I walked into a shop a few days ago ( for a few mins) without ear protection and the music has made my T go ballistic and changed tone to a higher pitch and more solid tone as well as being louder and also i have a sort of light vibration buzzing sensation in my head and around the eyes ( is this electrical activity?)

i just feel my T is not the normal type the way it reacts to sounds and keeps changing in pitch and tone - its very distressing as its difficult to habituate due to it changing quite often in reaction to general noise that isnt even that loud. It has disabled my life hugely.

Treble Health have a good understanding of Reactive T ( whereas my Audiologist does not)

youtube.com/watch?v=KYRpNOP...(Not working as expected?)

[Shenow]

My tinnitus changes all the time. Loudness, pitch, pulsation all change throughout the day. I haven’t worked out why. Loud sudden noises can even seem painful. I wear earplugs for anything that is likely to be more loud than normal (in fact I wear ear plugs and ear defenders when cutting the grass).

[Darren6]

Hi surviveT, I think we spoke before on this as I have had exactly what you have now. I had hyperacusis and reactive tinnitus. Like you, my morning T was low but everyday sounds would spike my tinnitus meaning I would use ear protection almost everywhere at the start. I also had the same affect that my tinnitus would morph into a solid tone at its worst.

I believe the key to recovery is to address the hyperacusis first. In my case, as the hyperacusis eased, the tinnitus became less of a problem. I too, like you, worried that the fluctuating tinnitus would be hard to habituate to but found that once the huperacusis eased the variations in tinnitus eased.

I used CBT and sound therapy via hearing aids to help reduce the sensitivity of the hyperacusis. Also like you, had discovered Dr Ben Thompsons channel, very useful.

I wish you well

[surviveT in reply to Darren6]

thnx Darren - Its just become so piercing , so solid, so unbearable like never before after this latest noise incident. I have tried hearing aids in the past and the T went ballistic and I couldnt sleep , eat and lost weight

[Darren6 in reply to surviveT]

sorry to hear this, have you tried seeing a tinnitus specialist with good knowledge of sound therapy?

[surviveT in reply to Darren6]

I saw NHS Audiologist who keeps on saying that i keep using the hearing aids (because I have some moderate hearing loss as well) - no sound therapy advice.

The Audiologist thinks the Hearing loss is the cause of my T but I think i have a rare T and the hearing loss was discovered during hearing test . I had a head bump and mild concussion and possibly an undiagnosed neurological condition which is the most likely cause

[surviveT in reply to Darren6]

Do you know of any tinnitus specialists in UK

[Darren6 in reply to surviveT]

I can give you the name of the private audiologist who helped me, I will private message you if thats ok as im not sure the rules on advertising services of others. She is based in London

[Nathalie_007 in reply to Darren6]

is your audiologist Jacqui Sheldrake?

[Darren6 in reply to Nathalie_007]

no, but ive heard good things about her. happy to private msg you my recommendation. as mentioned above im unsure if i would be allowed to put the name publicly of my audiologist there may be some rules around promoting and advertising.

[TishL in reply to Darren6]

Hi

Could you PM me with her details also. Thanks. I have reactive T also.

[Alfonso42 in reply to Darren6]

HI Darren, do you know of an audiologit in UK/London who can measure my hyperacusis and has a noise protocol for it? COuld you private message me please?

Thanks

[Darren6 in reply to Alfonso42]

Hi Alfonso, sorry I dont know of any. I can only recommend my audiologist who specalised in tinnitus and hyperacusis but mine was never measured.

[Alfonso42 in reply to Darren6]

Agreed. Had T and H before and having it again after 10 years, only worse now.

I think I played earphones too loud.

YES, definitely sort the Hyperacusis first and the T will go.

At least there is some hope for us with both problems. I think H can be treated with time. T the same but trickier I think. I am not a doctor

[feistyMiss]

my partner suffers terrible reactive tinnitus. any electrical appliances set it off. he cannot tolerate tv, phones, music, internet, anything electrical . He has many problems he says his tinnitus goes very high pitched then dissappeares into his head where it feels like a poker has been pushed through his head and vibrates leaving him with stinging pain numbness tempral pain, red ear where his whole ears goes bright red and stings and burnes, eyes sting and bright flashes and feels like someone is trying to push out his eyes. His sinus are blocked most of the time and he feels like he's drunk 2 bottles of vodka(he doesnt drink)The list is endless and our lives have been devastated with no understanding from anyone. I had to reply because you are the first person that has spoken of some of the symptoms my partner is going through.

[surviveT in reply to feistyMiss]

hi - thanks for yr reply - how does he mange to get through all this ? I am finding it so difficult at the moment after this latest change

[feistyMiss in reply to surviveT]

With alot of support from me, acceptance over the 4 years hes had it and working on keeping his stress levels down as stress makes it worse. when he first developed it he could not listen to a kitchen tap or click a light switch now he can listen to tap for alittle while but his tolerence levels are still poor and the ear defenders he hates wearing as the tinnitus builds up and up behind them til it rages. We are not giving up on hope that he will become more tolerant over time .He tries to take his mind off things by reading maybe thats why his eyes get sore but thats all he can do. Keeping your head as relaxed as you can and not stressing maybe will help the nerves in your head adapt to your tinnitus

[surviveT in reply to feistyMiss]

have u seen neurologist about all this ? are there any meds he can take?

[feistyMiss in reply to surviveT]

he cant travel more than 2 miles even that is a challenge(was house bound for 14 months)and would not cope with all electrical appliences and noise in hospital so hasnt seen neurologist doctor can only perscribe non specialist medication which is antidepressents and pregabalin which he tried but didnt help. If he sits near a computer that is transmitting he can tell you exactly when you press a button to access a web page because his tinnitus goes up to acertain high pitch which then dissappears into his head which will then vibrate and sting and can sometimes go numb,We dont do doctors anymore their lack of understanding was causing so much stress i think he is making small steps without them.

[surviveT in reply to feistyMiss]

hi - you said he has had tinnitus for 4 years - has the T & Hyperacusis got worse over this time? Ifeeli am heading the same way as yr husband

[feistyMiss in reply to surviveT]

hi surviveT - to start with faint tinnitus, went and got compacted earwax removed by suction. had to use olive oil for an extra week before being able to remove wax from left ear. After that hyperacusis developed pretty quickley. within a month all sounds became painfull even touching a duvet and made tinnitus worse it used to go up more in pitch but when it settled back down it would always be that bit louder, now it is very loud all the time. the more times say he traveled in a car the more his tolerance deteriated. stress does play a part even though is not the cause and we have worked extremely hard in reducing it and now he has a positive outlook and is determined to overcome obstacles and his hyperacusis has improved a bit over the past year. We are hoping for further improvement. what ever is happening to you at the moment hyperacusis can improve after it has got worse so please dont give up hope. i am convinced keeping positive and relaxing as much as you can without worrying(easier said than done) does have a positive impact on hyperacousis

[surviveT in reply to feistyMiss]

how about his sleeping - i am finding it more difficult to sleep after recent sound incident

[feistyMiss in reply to surviveT]

to start with he found it very difficult to sleep and took zopiclone but the doctor was reluctant to keep giving it(rightly so very addictive) tried hypnosis. problem was couldnt listen to someone talking for long periods of time but he did give us some self help techniques and breathing exercises which have helped with his panic attackes as well.He can go off to sleep now by reading and tiring out his eyes but he always wakes up between 3 and 4 and never goes back to sleep which he finds annoying so he will read to take his mind off the tinnitus. try to keep yourself as relaxed as possible, he found the more he worried about sleeping the worse it became. the way he ended up looking at it is - it is what it is and the tinnitus going up and down is its reaction to becoming sensetive to some of the frequencies within different sounds and over time they will adjust to them and become less sensitive but not to hinder its progress by getting stressed out but to give it every chance to re adjust

[surviveT in reply to feistyMiss]

my T changes after noise incidents every few weeks andeach time becomes more piercing and unbearable - what sort of sound does he have and does it change and get worse. Thnx fM - sorry for all these questions

[feistyMiss in reply to surviveT]

i'm more than happy to answer your questions, the uncertainty of the condition makes it very frightening and one of my partners bigg est worries was how loud was it going to get. It kept changing to start with which made it extremly scary. For the past 12 months it has remained stable it is loud and sounds like fizzy hissy static and he can hear it over a car engine. he doesnt get so much of the high pitched spikes he used to get but regular sounds are very loud and his toleration to sounds especially machinery mowers strimmers and sharp banging sends him mad and some sounds cause pain and distortion. What sounds set off your T?

[surviveT in reply to feistyMiss]

yes machinery noises , and artificial sounds like TV ,music in shops ( which i avoid). I dont go in shops or restaurants anymore - i am becoming more disabled with it . I do have hyperacusis as well. My T has become solid , more intense tone recently and more unbearable

[feistyMiss in reply to surviveT]

my partner i will call' S' cannot tolerate tv . He kept trying every so often but now doesnt bother. He used to have an electric radio alarm by the bed but when he looked at it the numbers would judder up and down and upset his ears. No radio either anything with a signal hisT reacts to has not listened to music for over 3 years. So for you its purely sound and not high frequency signals? how are you with the internet Do you know what set off your T and did your hyperacusis develop at the same time ?

[surviveT in reply to feistyMiss]

yes i think internet can affect it but not as much as yr husband .My T started after a head bump ( top back of head) and a mild concussion, then it was all triggered off by music - but there could have been some unknown neurological factors as well - but its the head bump that made something change in the auditory brain

[feistyMiss in reply to surviveT]

you could have inflamation and or fluid build up causing pressure in the auditory part caused by your injury. have you read about Bryan Pollard he gives some really good advice on H. S believes what he says because if he could go back in time when H started getting worse he says he should have stopped doing things liked. He tried to carry on riding his motorcycle and tried to hold on to his life but what he should have done was to allow the body to heal itself by protecting ears from the sounds that are hurting them by either avoiding too much noise stimulation and using ear defenders.( He didnt use these much because the T used to build up behind them) and giving them time. Time is a great healer and your head injury may need time to heal. S also says knowing what he knows now anxiety and stress stops or severely impedes the bodys own healing qualities and he puts his progression down to 'getting his head around the situation' try not to focus on the noise focus on how you can facilitate healing being positive that your H will settle down over time and the more you nurture your ears the quicker it will start to happen. S would read quietly. think of no music or tv as just a temperary thing and when the time is right you will get to do these things again and enjoy them without your T going crazy I hope this didnt sound like a lecture but i really feel for you i hope you have support

[Alfonso42 in reply to feistyMiss]

Hi,

Some advice here. I have both T and H but not as bad.

1)Use the earplug only when needed. If you use all the time it will worsen. So I have read

2) I recommend silicone earplugs. Very cheap and you can compact them in between mobile and mbile case. They will always be with you. THe expensive musician ones are too visible andend up getting lost.

3) try neuromoduation music. It will remove the pitch but no the hiss. An example in youtube: 4 Hours of High Pitched Tinnitus Neuromodulation Therapy That Works. It works within 1 minute or 2. It is temporary

4)Silverstein institute. US. They have an operation for hyperacusis.Round and Oval window Reinforcement. It is not cheap

Now, that is what I call advice not what the crappy ENTs do ' i am sorry, there is nothing I can do. My secretary will pass you the bill'.Pathetic.

Good luck and God bless you

[surviveT]

omg this sounds terrible ! can i ask, how old is he?

[Yam42]

Hi, my T was loud before for years and I managed to habituate after a while but since worse again last 6 months now it's very reactive. I cannot go to shops or drive my car without ear plugs as the noise vibrates and its piercing hiss/screech through my head. When I explain to people how loud it is I feel they don't believe me, sent me on a spiral it has. My anxiety through the roof n panic after a loud noise incase T increases, audiology said can't help me with my T until I sort out the ear wax and my mental health. For ear wax removal they'd use the suction but I fear the noise, can't even use the clippers on my hair anymore for fear of the vibration. I'm holding on to hope someone somewhere is working hard on finding us relief, ideally I'd like to know exactly who and what they're doing. You're not alone in this, we're all in it together and one day we will wake up to a post saying "Breaking news for T sufferers, a cure has been found" soon I pray. 🙏🙏🙏

[surviveT]

hi Yam - thnx for yr message - i cant use Hair clippers either . i had ear wax removed 2 weeks ago by an ENT consultant who removed the wax manually using just intruments ( no sounds) vey safe . There is a top neurologist working on treatments for T ( but a cure is way off in the future) -his name is Dr Dirk Ridder - check him out online

[Higgsy45 in reply to surviveT]

I had a consultation with Professor De Ridder. He prescribes a cocktail of medications at low doses.

[surviveT in reply to Higgsy45]

hi Higgsy - i have just read yr message - oh wow!! thats v interesting - di du go over to Belgium for consultation - I would be really interested to know what was involved - I was looking into this a few months ago but i am unable to travel cozof the T

[Higgsy45 in reply to surviveT]

I couldn't travel due to my condition. I had a 40 minute consultation for £78. Compare that to the useless ENTs here that cost 200 quid

[surviveT in reply to Higgsy45]

so u didnt go over there to Belgium - was it a video consultation? Was this with Dr Ridder ? - he is amazing and only person doing something to help very severe, intrusive T ( which is what i have got) .

Does the medication work for you ?

How long can u take the meds for ?

thnx Higgsy - this is what i need coz i am going out of my mind with the T

[Higgsy45 in reply to surviveT]

Yes and yes. Set up a consultation with Brai3n clinic. There are youtube lectures where he talks about medications

[surviveT in reply to Higgsy45]

yeh i hv seen some online lectures n talks - i think hes amazing

did u have to send him any scans or any other diagnositcs ?

[surviveT in reply to Higgsy45]

hi Higgsy - can i ask , what effect on the T does the medication treatment have ? (from Brai3n clinic) thnx

[Higgsy45 in reply to surviveT]

It lowers the volume and intensity

[surviveT in reply to Higgsy45]

thnx H - and also - how long can u take this medication for - is there a time limit on its effectiveness?

thnx H

[surviveT in reply to Higgsy45]

I contacted this clinic last autumn and they told me they dont do video consultations anymore and tht i would have to attend -even though i told them i cant travel coz of the severe T

[bournville]

Hi yes my tinnitus is very reactive too plus I have hyperacusis which like darren6 said may be the cause of the reactive aspect.

After years of living with it I find quiet environments are best and any attempt to mask it with noise - including music will cause spikes and tonal changes

I have sort of made peace with it and avoid a lot of situations that are triggers for spikes and tone changes so….

I still go to pubs but quiet ones

I still eat out but at quiet places

I still socialise but in quiet environments.

I dont go to concerts or the cinema anymore because they are both stupidly loud. 😄

Based on experience I use plugs to go into shops that are playing music too. I still get caught out and spikes are commonplace but they do pass I try to hold on to that when they happen.

The thing about reactive tinnitus I have found most helpful is to adapt and not battle against it by trying to do exactly what i used to do pre reactive tinnitus.