Tinitus and hyperacusis

[Candleinthewind]

Audiology department have told me hyperacusis is more psychotic than hearing. The treatments for tinitus are to do with what we think also. No department is owning hyperacusis, apart from rehabilitation. I've seen no one cured, except temporary through particular medication. Its different for different people. I took clonazepam for 2 weeks and my tinitus got very low. I had it taken off me because its addictive. Pleaded with gp, who said gp's couldn't prescribe it! Psychiatrist has given me various meds, all apart from clonazepam gave me distressing side effects daily! Tried otc benadryl antihistamins, made it worse!How can I convince my psychiatrist to prescribe clonazepam?

[Candleinthewind]

*re habituation

[Eleanor1989]

Hello

There are many people with hyperacusis and I also have it….

It was horrendous 17 months ago as everything hurt my ears, uncomfortable feeling and everything was so loud…

I had tinnitus for 30 years but the hyperacusis was awful, difficult to navigate at first..

I can recommend excellent specialists that have helped me..

and it does get better it just takes time and patience….

Message me

[surviveT]

I have hyperacusis as well - its definately not psychological/ psychotic

Yes GPs in UK generally will not prescribe c'pam - this is because it can become addictive and from what i have read a person needs to double the dose every few months to have the same effect

It has some side effects and can have withdrawal effects and can make the tinnitus worse when used long term ( which would be over 3 months)

How long have u had the T and Hyperacusis?

[Candleinthewind in reply to surviveT]

Hello. Thanks for your reply. I've had tinitus since about year 2000, and hyperacusis seemed to grow from it. I beleive it started through stress.its extremely dissapointing to not get meds that work, though I've heard of the horrors of side effects. I didn't have any apparent side effects from clonazepam, but dreadful side effects from other meds. I see what you are saying, though it doesn't help. Tolerating noise is hard aye x

[1966366 in reply to Candleinthewind]

I had no side effects from Clonazepam.

[Higgsy45]

Really the best way to use clonazepam is a couple of times a month for a couple of days

[Candleinthewind in reply to Higgsy45]

If only they would help with what works aye. Thanks for your reply, I've had similar thoughts myself, as its a bit scary about the addiction part. Bless you x

[surviveT in reply to Candleinthewind]

like Higgsy says - it best to use half or quarter of c'pam for just a couple times per month - for really difficult times . if u tell the docs u will use it in this way ,they may prescribe more . U would need a consultant to prescribe as u know - Psychiatrist or ENT .

[Candleinthewind in reply to surviveT]

Thank you so much. The best help I found was with a tinitus group that met monthly before the covid lockdown. The people were lovely, and it helped to normalise the things I was experiencing. Now I can't help thinking it has more to do with nuerology, psychiatrists are looking for particular patterns and don't understand that the noise actually drives you mad.

[surviveT]

i think my T is neurological as well - its difficult for the ENT docs to find exact cause as there are various and they dont have the resources to do this, as well as T not being fully understood by medical science at present

Hyperacusis can be treated with gentle sound therapy , from what i have read online. This is all within the realm of ENT or Audiology ( or Neurology if u have other symptoms as well) , not Psychiatry as such. Can i ask where u live ?

[Candleinthewind in reply to surviveT]

I'm in Portsmouth, England. The people I knew with T were not happy with the audiology treatment, some said the tests made it worse. I was advised to not wear my ear defenders cos they make you more sensitive, which made sense, so I tried it for 3-4 months intermittently but then realised it was getting worse not better so I went back to my ear defenders when I go outside. The audiologist assumed that I had gone cold turkey and when I pushed her she said it was more psychosis than hearing. She exclaimed it in frustration. That it has more to do with what the brain makes of the sound. But they really deal with hearing loss, and I can understand her frustration, but it didn't help. Hyperacusis is a known thing but a cure isn't a known thing, and as an invisible disability I find everyone wants to test it by using sound, which is basically torture. My male neighbours used to whistle to get a reaction from me. I was moved to sheltered accommodation after I went loopy about it (shouting and screaming).

[Candleinthewind in reply to Candleinthewind]

I've tried lots of advice over the years, even trying to kid myself it wasn't there, like "positive thinking" as abraham hicks suggests, but in the end I feel insulted and not believed, especially after they slapped a psychosis label on me. Have you seen the American TV show called 'the imperfects"? It is a good portrayal of hyperacusis at its worst.

[surviveT]

hi - this is similar to my experience: hearing test revealed some moderate hearing loss so i received hearing aids , which made the T and H worse . I told Audiology this and they insisted I keep wearing them and that my problem is anxiety /psychological and referred me to psychology. I was not anxious about the T as i was / am very accepting of it - every day.

The fact is , they dont really know what to do if sound therapy doesnt work for someone and therefore its psychological ( which is a bit of an insult , when we know ourselves that its not) . You really have to trust yr own instincts on what works for u and gain advice from the personal experience of people on this forum , which is can be of more value than some the current medical approaches for 'severe' tinnitus ( and H)

I was told to reduce ear plugs and defenders - I wear these when in car and when walking beside busy traffic , and when loud outdoor noises are present - and this stops the T and H increasing

[Candleinthewind in reply to surviveT]

Agreed. Thanks for sharing x

[Candleinthewind in reply to Candleinthewind]

I find humming helps, but often times the sound is so overwhelming I can't think straight and forget to hum. I have fallen over in the street when an ambulance siren goes by me. The audiologist spent an inordinate amount of time explaining to me that sirens have to be ear splitting, I wanted to hit her!

[Candleinthewind in reply to Candleinthewind]

I find laughing helps too. In general I am a positive person, but its hard to wake up to that sound and keep plodding on. My adult kids who I'm really close to took a long time to get used to the idea. On a family outing one day, an ambulance went right by us with its siren on and my son jumped in between myself and the ambulance with his arms flailing about, which made me laugh. Although my tinitus went up a few notches for the next few hours, it didn't make me fall over because of me making more sound in my own head..the laughing, like humming.

[surviveT in reply to Candleinthewind]

I have prob with sirens and road works and even busy traffic and lots of other outdoor ( and indoor) loud noises - as these sounds push up my T (and Hyprcss) - and the 'chief' NHS Adiologist in my region said "why would it" which is staggering . They are too concerned with sticking to outdated guidelines than listening to what people are actually telling them - and like i said before, tinnitus is not fully understood by medical science - why dont they just admit that for severe, debilitating cases

[Candleinthewind in reply to surviveT]

I know what you mean. It is staggering yes. It does help to hear same experiences. I mentioned I thought I was picking up electrical zaps as I went by electricity points, this was put down to psychosis. Trying to make sense of it is tricky. So, I guess, if it is for us, so it must be for them. Do you get a jolt if noise stops suddenly too? Where are you?

[surviveT in reply to Candleinthewind]

I am in North Yorkshire .

There is such a thing as Electromagnetic hypersensitivity - which was dismissed years ago and is now officially recognised as a medical condition in many countries. Its possible that Tinnitus and Hyprcss and other conditions could be affected by EMF's but its not really known at the present time but there is growing evidence - and if u mention this to a doctor they would probably dismiss it ( as its not in their official guidelines). I think its very possible myself.

I would think from what u hv said that a Neurologist would have been the best option - but even for them there is a lot that they dont understand about the brain

[1966366]

Hiya, sorry for the late reply but... I was on Clonazepam for about 2 years in the first instance and stopped. Then along came Lockdown and my T got back to the level of "intrusive/bothersome" to use my ENT consultant phrases and I started the Clonazepam again against my ENT fervent wish. The second time I had bad insomnia when I stopped taking the tablets because the dosage was constantly increasing but less effective. Nevertheless, I still feel it is the ONLY medication - for me, at least - to totally eradicate my T and let me live a normal life. Hope this helps

[Candleinthewind in reply to 1966366]

Thankyou for your replies Yes thats helpful

[surviveT in reply to 1966366]

hello. I think severe cases could be given a safer form of this , just to lower the volume to a less distressing level. I have read the clonazepam can make the tinnitus worse , have you experienced this

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