The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Please help me find medical explanation for noise sensitivity which will convince my parents

Discussion in 'General ME/CFS Discussion' started by Wolfiness, Apr 24, 2017.

  1. Wolfiness

    Wolfiness Activity Level 0

    Messages:
    455
    Likes:
    1,946
    UK
    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
     
    Last edited: Apr 24, 2017
    lemonworld and denlander like this.
  2. HowToEscape?

    HowToEscape? Senior Member

    Messages:
    465
    Likes:
    607
    Medicine has not even seriously investigated our disease much less understood it.

    Severe sensitivity to noise is common for us. Howard bloom wrote about this in his guide to the illness, I believe it's 'CFS for dummies', written years ago when CFS was the only well-known term for it.

    Mr. Bloom has written a stack of books...and that's just during his retirement phase.
     
    AnnaDove likes this.
  3. halcyon

    halcyon Senior Member

    Messages:
    2,297
    Likes:
    5,377
    Not sure about the basis for it, but it is extremely common in ME. Can you maybe see an audiologist and have a hearing test done? I had one done early on and it showed increased acuity to certain frequencies. I also had vertigo, sudden onset tinnitus, and vestibular neuritis at ME onset.

    There are a lot of potential causes of hyperacusis, mostly organic involving damage to the auditory nerve or the CNS, but unfortunately also some claimed to be psychosomatic, which seems totally bogus to me. The closest descriptions I've found to the symptoms are tonic tensor tympani syndrome and secondary endolymphatic hydrops, unfortunately neither can be objectively demonstrated as far as I know.
     
    Last edited: Apr 24, 2017
    Sancar likes this.
  4. Webdog

    Webdog Senior Member

  5. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    Messages:
    695
    Likes:
    2,292
    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.
     
  6. Webdog

    Webdog Senior Member

    Proteomics of Cerebrospinal Fluid in Chronic Fatigue Syndrome
    https://clinicaltrials.gov/show/NCT00810329

    The detailed description of this clinical trial states:

    "Many of the participants with CFS do have associated Migraine headaches and they complain of severe light and sound sensitivity. We are analysing those group of people and decision have to be made as to which medications would work at best, thus providing immediate relief from headache."
     
    Dulaigh, JaimeS and Sancar like this.
  7. Wolfiness

    Wolfiness Activity Level 0

    Messages:
    455
    Likes:
    1,946
    UK
    Thanks, but the thing is, I know and they know what hyperacusis is.

    I was kind of hoping there's an article somewhere where Ron Davis tells them to shut my door.

    Yeah but I need them to keep my door shut.
     
    JaimeS, mirshine, merylg and 5 others like this.
  8. TreePerson

    TreePerson Senior Member

    Messages:
    214
    Likes:
    1,011
    U.K.
    There's the brain scans that have shown white patches on the brain in the area related to noise light etc. Consistent with chronic inflammation. Ron Davis may not have written the required article but he is very good at keeping his own sons door shut. I think they have a notice on it. Maybe you could make one. When I still lived with my children I found the need for peace and space constant and overwhelming and at the same time felt so guilty about it. My mother has the radio on all the time and it amazes me that she can bear it. I only want to listen to the birds. It's a shit illness.
     
    Dulaigh, JaimeS, Old Bones and 7 others like this.
  9. Wolfiness

    Wolfiness Activity Level 0

    Messages:
    455
    Likes:
    1,946
    UK
    :D
    I KNOW! I KNOW! I'm not asking them to singlehandedly mastermind the biomedical solution to my illness. I just need them to keep the door shut.
     
    JaimeS, mirshine, merylg and 3 others like this.
  10. TreePerson

    TreePerson Senior Member

    Messages:
    214
    Likes:
    1,011
    U.K.
    Maybe a large notice saying "WHAT WOULD RON DO?" :)
     
    JaimeS, lemonworld, merylg and 6 others like this.
  11. Wolfiness

    Wolfiness Activity Level 0

    Messages:
    455
    Likes:
    1,946
    UK
    :D

    Miserere me Ronalde!

    Maybe I can fake a letter from him to them like parents do with Santa.
     
  12. Wolfiness

    Wolfiness Activity Level 0

    Messages:
    455
    Likes:
    1,946
    UK
  13. adreno

    adreno PR activist

    Messages:
    4,843
    Likes:
    11,022
    https://www.healthrising.org/blog/2...fs-puzzle-the-neuroinflammatory-series-pt-ii/
     
    Dulaigh, Sancar, Mary and 3 others like this.
  14. Wolfiness

    Wolfiness Activity Level 0

    Messages:
    455
    Likes:
    1,946
    UK
    I have had seizures…
    I tried memantine actually but it did nothing. I would love to try clonazepam.
     
  15. purrsian

    purrsian Senior Member

    Messages:
    316
    Likes:
    799
    I haven't been able to read all replies to this thread yet due to brain fog, just wanted to add my understanding so I hope I don't repeat anyone! To me, I think it's about our delicate energy balance. Anything requiring brain processing time is harder when fatigued, because it takes energy for the brain to function. Thus the more fatigued you are, the less energy you have to - read, process spoken language, process light and what you see, process sounds, connect one thought with another...etc.

    Our brains are amazing and manage to function in such as cluttered crazy world because we can filter irrelevant aspects of our world out. When I was in uni, they showed us a video where you had to count the amount of balls thrown between a group of people but you couldn't use fingers (had to mentally count) and it included multiple balls thrown at a time. The people who managed to keep counting didn't notice the increasingly crazy things going on around the ball throwing, such as a monkey walking across the screen, because our brains are so impressive at filtering.

    Without enough energy to properly nourish the brain, I think we lose our ability to adequately filter the world around us and things get louder, more obtrusive, brighter and more overwhelming. What is normal for most people becomes too much for us. I think normal people might be able to understand a bit better if you remind them of how a hangover feels - lights are brighter and noises are so loud and overwhelming.

    I believe that many of our cognitive and sensory issues boil down to lack of proper nourishment for the brain. I'm not sure if there have been studies related to this, but I'm pretty sure there have been studies indicating hypoperfusion (low blood flow) to the brain in CFS patients. Blood provides the energy and nourishment to make our brains function.
     
    Dulaigh likes this.
  16. HowToEscape?

    HowToEscape? Senior Member

    Messages:
    465
    Likes:
    607
    If they're letting noise into your room when you obviously need silence,they're being jerks, to put it mildly.
    If someone wants to be a jerk, they're going to be a jerk.
     
    Sancar and Valentijn like this.
  17. Effi

    Effi Senior Member

    Messages:
    1,491
    Likes:
    4,552
    Europe
    @Wolfiness I think Jarred Younger talked about this at one point: he developed a method to calculate the temperature of the brain. In PWME he saw that in certain areas of our brain the temperature is higher than normal (you could call this 'brain fever'), and that it's precisely those areas of the brain that are responsible for things like sensory processing, among other things. So this would explain why we are so sensitive to light/sound/etc. (I can't remember where he said it, maybe someone else knows?)
     
    Sancar, Wolfiness and HowToEscape? like this.
  18. Sherpa

    Sherpa Ex-workaholic adrenaline junkie

    Messages:
    625
    Likes:
    778
    USA
    Noise sensitivity is often caused by thyroid dysfunction and corrected by balancing levels of thyroid hormone. Dr. Shames writes about this in his book Thyroid Mind Power.
     
  19. Cheesus

    Cheesus Senior Member

    Messages:
    1,229
    Likes:
    5,494
    UK
    Hi @Wolfiness

    I'm afraid I don't have any recommendations, but I just wanted to say that I felt a great surge of compassion for you. I have suffered from severe noise sensitivity, and I know how horrible it can be. I hope you find a solution!
     
    JaimeS and Wolfiness like this.
  20. Rooney

    Rooney Senior Member

    Messages:
    136
    Likes:
    187
    SE USA
    Show them this thread.
    Get a sign for your door - make one "Keep door shut". Always keep it shut even when out of your room, so it's a familiar sight..
    Ask for a white noise machine.
    Families can get so sick of our medical issues, so it may be easier just to make some new habits to protect your brain.
    Good luck. I live alone but that's real hard too!
     
    JaimeS and mirshine like this.

See more popular forum discussions.

Share This Page