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

[PatJ]

Please help me find an authoritative neuro/immune explanation for noise sensitivity which will convince my parents to be more careful around me.

Have you tried any of the supplements in Hip's thread: Five ways to reduce your ME/CFS wired but tired hyperaroused brain state?

There is an interesting explanation in this article about how people with ME can be shifted toward a lower seizure threshold which causes neurons to become overexcitable. If they fire too much they eventually die. If this is what's happening to you then prolonged excess noise might lead to brain damage (that's my opinion as I understand Dr. Cheney's explanation of what's happening to neurons; this isn't medical advice).

 

[tudiemoore]

Seems you have gotten lots of good info and suggestions but none exactly fit for you?
Obtaining earplugs and all the other things might seem impossible for you if you are bedbound.

Maybe we need to think of things that are within your power to help you cope. Keeping the door shut might be the most direct and, while not easy to execute, might be a possibility. If you can't get a rope would a scarf do? Etc.

For me all the various "noises" on you tube are very relaxing.
If you can find a few that work and use them, maybe being more relaxed could become a coping mechanism and some (a few) of the negatives in your situation could be soothed. Maybe--

Dainty's sharing of her relationship with her family gives a clear picture of family interaction.
She had not only mental determination but physical strength to carry out a plan. Good sharing, Dainty

Is there anyone to help you obtain any of the ideas shared--earplugs, etc. that appeal to you?
At the moment your family isn't able to extend themselves any further. Any written articles, etc. may fall on deaf ears.

Detachment could be a tool, letting go of any more requests, etc., since they can't see and respond to your needs. This is extremely hard to do but may give you peace.

I am hoping really, really hard that things can be better soon!
Love
tm

 

[char47]

I got told "noise bothers a person more when they're irritated by it," which is the noise equivalent of "you're tired because you're not exercising enough".

what these people dont understand is that our 'problem' with noise isnt that we dont like it, or that it is intrusive, but that it makes us ill. Sound sensitivity is one of my most problematic symptoms simply because it's the one people least understand. Saying things like 'try not to be irritated by it' is like telling a person who's allergic to nuts to 'try to add strong flavours to things with nuts in so you cant taste them'
I sympathise massively Wolfiness. I'm so sorry you're having to deal with this. It stinks
Loads of people who think they understand, just dont, even other people with sound 'sensitivity' dont always get it because a lot of people with 'sound sensitivity' are upset by sound, - it makes them anxious or agitated or they cant psychologically cope with it - and thats very different than being made ill by it. I am made just as ill by sound i enjoy just as much as sound which is unpleasant.
And that comment about "dont shout i've had a long day".... wow passive aggressive much? I'm angry on your behalf that they are unable to really hear the reality of the effects of their behaviour on you.

My neighbours just installed a hot tub - it's not very loud but it's making my life a misery, it's on a thermostat so it comes on for an hour every 2 hrs all through summer - so 1hr of every 3 is no longer quiet. When they installed it i experienced the loss of quiet like a bereavement because the suffering the sound of it causes is so acute, it's really affected my quality of life. But it's so completely un-intelligable to most people that it just seems to them like i am saying its irritating me & they suggest i play music to cover the sound .

I wish i could suggest something helpful for you. I wish someone with authority - like one of our genuine expert Drs would write an article explaining that it is a real & serious thing. But sensory issues seem to be very low down on the priority list for researchers/Drs etc.

Sorry none of that really helps you at all does it. I wish i could help. I'm thinking of you, & sending them vibes across the miles, to "shut the hell up! "

 

[Seven7]

Mine was horrible. Still is. Since I had OI first and I remember since I was a teen being unable to tolerate the noise, and it got better when I did the OI meds. Maybe if you do vassocontrictions teas helps? Or you can play with dilatory whcihever can help.

 

[Wolfiness]

Thanks but I have earplugs and mufflers. It's not enough and it also means I have to keep interrupting what I am choosing to listen to whenever they start up with noise.

 

[frozenborderline]

I actually have been struggling with this symptom for the past few months since my symptoms worsened. It gives me a ton of despair , because I’m a musician by trade and listening to music was my main way of passing the time and keeping myself mentally and emotionally together before this. I have found articles about the relationship between hyperacusis and chiari. I may have cci/aai and have many of the signs. I am wondering if treatment for cci will resolve this. Despite being bedridden and having no social life, the biggest blow for me is not being able to listen to music. It’s affected my mental health very badly.

I also wonder how much sensory perception and hyperacusis is related to gaba/glutamate/ion channels. I have been prescribed Ativan and it helps with the hyperacusis a decent amount but one can’t simply take Ativan all the time. I am curious about the effect of lidocaine, ketamine, xenon, lithium, and various gabaergics on this problem.

The other thing I was considering is the possible relationship btwn mcas and hyperacusis. It seems that mcas May play a role in autism which also has this sensory issue. I have many other symptoms of mcas like random rashes /itching and allergic reactions to changes in air quality. I will be experimenting with some non drowsy antihistamines and mast cell stabilizers when I can get them, and see how it affects my hyperacusis.

Oh and lastly, in reading about hyperacusis I have found that there’s a relationship between this and misophonia. Both my sister and I have misophonia to an extent although hers is more severe. I wonder if there are some uncovered genetic links here.
@Hip what do you think about the possible causes and solutions to hyperacusis

 

[outdamnspot]

I think the stress from chronic noise exposure is responsible for the severity of my illness. I estimate I would be 60-70% more functional if I had lived in another environment