Please help me find an authoritative neuro/immune explanation for noise sensitivity which will convince my parents to be more careful around me. After 15 years they're still too careless for my sanity and I am too weak on my own to convince them to take me seriously.
Something like this -
"Naviaux stated that because it takes more energy to relax than to react, anxiety, tension and hypersensitivity are likely outcomes of being caught in a low energy state."
https://www.healthrising.org/blog/2...aviaux-chronic-fatigue-syndrome-core-problem/
Tx
It's simple:
Hyperacusis is a medical term for noise sensitivity.
Hyperacusis is a symptom in many neurological illnesses including ME.
The UK NHS has a web page on it:
http://www.nhs.uk/Conditions/hyperacusis/Pages/Introduction.asp
If you're able, scroll down through this American CFS blog, it's quite helpful for your plight:
http://cfspatientadvocate.blogspot.co.uk/2011/08/hyperacusis.html
Here's a few Science papers:
Astrocyte–neuron interactions in neurological disorders
Astrocytes: biology and pathology
CNS Injury, Glial Scars, and Inflammation
Pain hypersensitivity mechanisms at a glance
Some Thoughts:
1) As for validating yourself to anyone, you don't need to. Your life experience is your
own.
2) As for proving it, it's currently almost impossible. For example: Is hyperacusis in developmental Autism when a child bites you, more or less real than hyperacusis in ME when a patient wears ear defenders in a dark bedroom?
So I wouldn't bother going down those avenues because you'd need to ingest volumes of journals on neurology and immunology and get nowhere anyway as we don't have enough pathological data from autopsy ME studies looking at brain damage or changes associated to this area.
Even if we did, your own individual brain is immensely complex and so many different parts of it interact, you'd be lost trying to have a tick box to see which part is doing what.
ME involves low grade chronic neuroinflammation and oxidative stress
Many people also have chronic headaches, allergies, infections, innate immune activation, poor sleep.
QEEG brain maps can even show ME brains are emitting seizure like patterns, even when they aren't epileptics.
All of these derangements, combined, will in many people produce an over sensitive, hyper wired brain one of which will mean your sensory input channels will become deranged, and thus the very least you're going to experience is hyperacusis, chronic pain, dizzyness, poor concentration, photophobia, short term memory loss, and so forth.
There are numerous non specific blood and urine markers to test for that affect your brain negatively such as: Elevated D-Lactate, Ammonia, high level of oxidative stress markers and Low Vitamin E, B6, Low Essential Fatty Acids, Low Amino Acids etc which combined if abnormal will hardly help matters and likely contribute further to headaches such as migraines. Add in inflammation/innate immune system markers (probably 20+ of these) and things make a lot of sense why patients have so many neurological issues, but the actual cause remains a mystery, as it does in most diseases. So in conclusion, all we can measure are effects.
Back to what we do understand, or at least accept as 'legitimate', irrespective if you have ME, Cancer, or Bi-polar is unifying illnesses or syndromes that affect so many people, such as headaches associated to input (light) for example and allergies such as (Mast Cells) from trigger foods, chemicals,etc.
Migraines can cause hyperacusis, and paradoxically you don't need to get a headache to have a migraine, or even throw up. Migraines can also cause terrible vertigo and weird seizure like unreal episodes. I have them and sometimes if I am outside (rarely) waiting for an ambulance at the hospital I have to sit with my fingers in my ears because the sound of traffic and people talking is literally unbearable and even wearing a huge pair of headphones won't work.Other times it's not as bad.
Sadly what we experience is the consequence of having a complex, chronic neuro immune illness yet we tend only to have similar not identical experiences as all of our brains are wired individually to be able to cope, not cope, compensate and not compensate with certain stimuli and 'insults'.
If you wanted to guess, the 'cause'? It's something likely associated with how brain neurons astrocytes glial cells all interact. Inflammation, autoimmunity, infection, oxidative stress and your brain feeling like it's on 'fire'- because it is. Not fatal encephalitis brain swelling level that shows up on an MRI which doctors expect to see in a 'inflammatory brain disease', but enough inflammation that your brain cell connectivity nexwork is scrambled, and transiently, misfires badly leading to all sorts of nasty experiences.
Hyperacusis is just one end outcome of ending up with a disabling chronic disease affecting your brain, directed by the immune system, for which the UK NHS currently places responsibility on the patient to 'recover' with no actual treatment protocol in place other than fraud (CBT./GET to change 'beliefs' in ME being an organic disease).
Hopefully in the next few years though, this will change with re-classification and better recognition.
