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Profound Hyperacusis

Postby stonebird on Wed Aug 14, 2013 1:06 pm

I suffer from profound noise sensitivity such that I cannot tolerate the sound of ordinary voices or ordinary everyday noises. Any repeated noise, even one that would be considered low, if it is repeated continually torments me. Any noise can cause my hands to paralyse, my body to go numb, my muscles to spasm, my guts to tremor, my body to overheat, my head to explode with pain and my symptoms to instantly deteriorate.

I have Very Severe ME. I have to spend large amounts of time in one room with triple glazing and thick sound proof curtains, because of external noise, especially from airforce jets that fly low over my house - causing me physical harm and deterioration.

I am in constant severe pain, I have massive headaches, left/right sided or total paralysis daily. I have post exertional neuro immune exhaustion, very severe cognitive dysfunction, processing information can be delayed for several hours. I am unable to see people, or bear touch. I have multiple chemical sesitivity and gastric issues, breathing and swallowing difficulties and have no medical consultant to advise me.

I cannot travel to a hospital, I cannot be in any public environment because of my extreme symptoms wihout harm I cannot have two- way conversation.

Can you tell me, what medical consultant will take my physical symptoms seriously ? What treatment is there for noise sensitivity ?

There is such a risk, by any interaction, of harm - how can that be taken into account ? Is there any treatment ?

What sort of medical consultant deals with such profound symptoms and acute noise sensitivity ?
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Re: Profound Hyperacusis

Postby Dr Charles Shepherd on Wed Aug 14, 2013 2:31 pm

You clearly have a complex and serious illness that really requires 'hands on' assessment before coming to any conclusions about how all your various problems/symptoms should be managed.

As we point out in our MEA management guidelines there is an urgent need for a number of specialised in-patient hospital units, with properly trained staff and suitable facilities for people with severe ME/CFS, where a period of detailed assessment and management can be carried out.

At present, the only alternative to proper in-patient assessment is domiciliary assessment - where a doctor comes to your home. But this is obviously expensive and time consuming for the NHS - so it's not easy to obtain.

You do not say where you live. There are some hospital based clinics who carry out domiciliary visits and assessments. So it might be worth checking if this is something that is available in your area.

Hyperacusis (sensitivity to noise/loud noise) can be a symptom of ME/CFS - as can tinnitus (hearing strange noises in the ear). Where this is severe, assessment and opinion from an ENT (Ear Nose and Throat) consultant might be helpful.

I'm sorry that I can only be of limited help here.
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association
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Dr Charles Shepherd
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Re: Profound Hyperacusis

Postby stonebird on Wed Aug 14, 2013 3:17 pm

That is interesting to ask an ENT specialist. However it is impossible to get to a clinic without endangerment to my health. I would not be able to tolerate any tests anyway, because I cannot bear to be touched, I cannot bear noise.

Realistically , my local hospital has stated publically that it does not offer treatment to people with ME and we know they are psychiatrically biased.

You emphasise management, however I manage my illness very well in a complex and difficult situation. What I need are proper biomedical tests, treatments and explanation and these are lacking.

Do you think there is a biomeducal consultant anywhere on the NHS who understands, who can safely treat Severe ME, without risk of further harm ?

I have been harmed by people who say they know, in the past - that has partially led to me being severely affected.

Can you specifically explain what causes noise sensitivity, in ME, on such an acute level ?
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