Frequently asked questions (FAQs)
What is misophonia?
Misophonia literally means "extreme dislike" or "hatred" (miso-) of "sound" (-phonia). The term was coined by the US scientists Pawel and Margaret Jastreboff in 2001. The vast majority of people joining self-help groups who have an extreme reaction to everyday sounds report an intriguingly similar set of symptoms. These may vary from one person to another but generally speaking:
* the age of onset will often be around 10-12
* the "trigger" sounds which tend to be most difficult are connected with eating and breathing
* the reaction starts with the sound (or some aspect of the sound) and often develops to include actions associated with the sound and even anticipation of those actions
* the closer the sufferer is emotionally to the "trigger" person, the more offensive the sound tends to be
* the reaction is experienced most commonly as extreme rage
* the trigger sound can create an overwhelming fight or flight response in the sufferer, so they experience a desire to do extreme violence to the maker of the sound, or to escape the vicinity of the sound at all costs.
I've heard of Selective (or Soft) Sound Sensitivity Syndrome (also known as SSSS or 4S). What's the difference between that and misophonia?
The term Selective Sound Sensitivity Syndrome has been championed by audiologist Marsha Johnson as a more accurate description of the symptoms experienced by many misophonia sufferers, but Misophonia UK understands that Dr Johnson now prefers to use the term misophonia as an official diagnosis.
Isn't misophonia a kind of phobia?
Patients who have a particularly extreme reaction to their trigger sounds will probably be diagnosed as having phonophobia. Whether misophonia/phonophobia have the same physiological origin as other phobias is yet to be investigated. There is a symptom of migraine headache which has long been described as phonophobia. Again, the similarity between this and misophonia has, to our knowledge, never been investigated.
What are the symptoms?
See "what is misophonia?" above.
Is there a cure for misophonia?
No. Misophonia UK will be campaigning for more research into the condition, but at present, a cure, or even generally effective therapy, is at best many years away.
What treatments do exist?
Tinnitus Retraining Therapy (TRT), Cognitive Behavioural Therapy (CBT) and psychotherapeutic hypnotherapy, for instance, have all been reported to have been beneficial to some patients, but whether they were effective in the long term needs to be confirmed by properly-funded research. Also, it's important to distinguish between treatments that simply treat the symptoms and those which will hopefully prevent the symptoms occurring in the first place. See here for further information.
So what help is there?
Although many treatments don't help to cure misophonia, they can help to mask the offending sounds, making daily life more bearable. Moreover, there are a range of coping skills which everybody with misophonia, and those in contact with them, should be aware of. For many people, simply getting a diagnosis is an enormous relief, official confirmation that they are not simply "making it up" or "somebody who needs to learn some manners", the kind of epithets that others (understandably given the lack of knowledge of the condition) level at people with misophonia. See here for further information.
How can I get a diagnosis?
In the first instance, you should always go to your family doctor. If necessary, he or she will refer you to an appropriate specialist.
My doctor's never heard of misophonia. What should I do?
Because the diagnosis of misophonia was only established in 2001, it is true that the vast majority of family doctors have never heard of the condition. However, you can still ask to be referred to a consultant who is familiar with it - on the NHS or privately if you prefer. Ideally, you will want to be seen by an audiological physician, but, if there is not one in your area (as they are a rare beast in the NHS!), you should ask for an ENT (ear, nose and throat) consultant. Be warned that not necessarily all consultants will be sympathetic to the idea of misophonia. Misophonia UK maintains a register of UK doctors who are willing to make such a diagnosis.
How many people have it?
We simply don't know at present, which is why Misophonia UK intends to conduct research in this area. What we can say is that the disease is almost certainly under-reported by patients to doctors, and under-diagnosed by doctors. One self-help group in the US has over 1,200 members and we think that is probably "the tip of the iceberg".
When I say I have misophonia and explain to people what it is, they just say that everybody has sounds they don't like and I should "get over it". What should I tell them?
We've heard this many times. Nails screeching against a blackboard is an oft-cited example. The plain fact is that clinical misophonia can and does lead, in extreme cases, to the break-up of families and divorce, unemployment and social exclusion. In other words, somebody with misophonia has an extreme reaction to certain sounds which is way out of the ordinary. It's a bit like comparing someone who is "a little down" one day with someone else who has chronic clinical depression. Don't let people's ignorance of the condition stop you getting necessary help. If in doubt, always see a doctor.
Last content review: 1 June 2012.
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