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

[caledonia]

I second on making a sign for the door. Maybe you can tie a rope around the knob so you can pull the door shut yourself from bed.

If you haven't done so already, invest in a box of earplugs.

I get mine from the Earplug Superstore.
http://www.earplugstore.com/

The industrial strength E.A.R. Classics are my favorites, with a 29 decibel reduction.
http://www.earplugstore.com/eclpvcfopln2.html

You can also order a starter variety pack, so you can try out several different kinds and discover what works best for you.

 

[Keela Too]

Maybe a spring on the door? You can soften the noise of it closing by using stick on pads of felt on the frame, so it closes softly.

Someone suggested a rope to the door, another door closer that is simple and effective is a weight on the end of a rope. As the door opens the weight gets lifted, as soon as it is let go, the weight pulls the door shut. There is a bit of noise with the rope sliding and perhaps the weight moving along the wall, but it is a simple door closer that works. xx

 

[Wolfiness]

Tx everyone. I used to have string but they tripped on it and I'm entirely bedbound too weak now to do anything for myself including make or nag them to install stuff. I'll buy stickers and try to explain my distress again.

Ask for a white noise machine.

I've never understood how this isn't just torture! It is actually used by torturers!

 

[halcyon]

I've never understood how this isn't just torture! It is actually used by torturers!

Smoothed brown noise is a lot less obnoxious, but still might be too much for someone with hyperacusis.

 

[Mary]

I have had seizures…
I tried memantine actually but it did nothing. I would love to try clonazepam.

You might try calcium pyruvate. I've been dealing with crippling insomnia for a few months since tapering off a long-term (11 years!) low dose of lorazepam for sleep. Just yesterday I came across info that says that calcium pyruvate can help with glutamate excitoxicity. Years ago calcium pyruvate boosted my energy for a few days. Anyways, last night I took calcium pyruvate before bed and a small dose middle of the night, and slept better than I have in weeks.

Here are a couple of links: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3995922/
http://forums.phoenixrising.me/inde...amate-from-brain-with-got-oxaloacetate.32655/

FWIW, I also discovered that several of the things I was taking to help with sleep, which had all helped at one time, were now probably exacerbating the problem (l-theanine, glycine, vitamin D3)

Resveratrol is supposed to be helpful as well.

I'd stay away from benzos if at all possible - you don't want to deal with coming off one.

 

[Wolfiness]

Smoothed brown noise is a lot less obnoxious, but still might be too much for someone with hyperacusis.

Yeah I've tried all the colours

@Mary I like the excitoxicity hypothesis too but it doesn't yield results for me.

Screaming, throwing and stabbing stuff are my favoured remedies but they are all too physically demanding and just cause permanent overall deterioration now.

 

[Alvin2]

If you haven't done so already, invest in a box of earplugs.

I get mine from the Earplug Superstore.
http://www.earplugstore.com/

The industrial strength E.A.R. Classics are my favorites, with a 29 decibel reduction.
http://www.earplugstore.com/eclpvcfopln2.html

You can also order a starter variety pack, so you can try out several different kinds and discover what works best for you.

33dB is the highest available, though i find after 3-4 hours the pain of wearing any ear plugs gets too strong to keep them in. I do not understand how anyone can wear them for a whole night/day, though this is probably caused by this condition somehow, anyone else have this same problem?
That said there are also noise cancelling headphones, they work better on low frequencies then high ones but are electronic and not hopefully pain causing at all.

 

[purrsian]

Ask for a white noise machine.

If you can't get an actual white noise machine, you can look up "white noise" on youtube and play it via phone or laptop through headphones. I use this when neighbourhood noises like mowing get too much for me. Also use it for rain sounds, sleep music, etc.

 

[caledonia]

33dB is the highest available, though i find after 3-4 hours the pain of wearing any ear plugs gets too strong to keep them in. I do not understand how anyone can wear them for a whole night/day, though this is probably caused by this condition somehow, anyone else have this same problem?
That said there are also noise cancelling headphones, they work better on low frequencies then high ones but are electronic and not hopefully pain causing at all.

I would suggest getting a variety pack from the Earplug Superstore and trying out other brands. Earplugs shouldn't hurt. I have run into some that do hurt and some that don't.

 

[Alvin2]

If you can't get an actual white noise machine, you can look up "white noise" on youtube and play it via phone or laptop through headphones. I use this when neighbourhood noises like mowing get too much for me. Also use it for rain sounds, sleep music, etc.

https://simplynoise.com/

I would suggest getting a variety pack from the Earplug Superstore and trying out other brands. Earplugs shouldn't hurt. I have run into some that do hurt and some that don't.

I find all hurt, i've used a dozen brands, its a quirk of my condition i suppose, also having a weight on me will hurt after a while even if its not heavy, say a heating pad on my arm will become very painful if left in place for a few hours.

 

[Wolfiness]

It sucks ((( @Alvin2 ))) Scylla and Charybdis.

 

[caledonia]

https://simplynoise.com/

I find all hurt, i've used a dozen brands, its a quirk of my condition i suppose, also having a weight on me will hurt after a while even if its not heavy, say a heating pad on my arm will become very painful if left in place for a few hours.

Got it. I have something similar, but not to that extent.

 

[ahmo]

I've always been overly sensitive to noise. When I was at my worst w/ ME, I was a mess. I can now tolerate small amounts of lawnmower noise. I thought I had another reference to a syndrome of noise sensitivity, but don't know what it's filed under. Here's a reference, though, and you might check the original thread. Good luck. No one can imagine what it's like to be so affected by other people's eating or breathing.
http://phoenixrising.me/archives/18836

Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)

Nitric oxide is like the key which the doorman at a school uses to open the gate for the children to leave, allowing the bustling crowd of students out at the end of the school day. Without it, the students stay locked in the school, so more and more noise builds. There are other smaller ‘gates’ for the children to exit through but this takes much longer, so the noise takes longer to cease.

This noise allows for prolonged and potentially damaging nervous impulses, which could explain the sensory sensitivity and phenomena many ME/CFS patients suffer, such as light and sound sensitivity and the sensation of internal tremor following overexertion.

 

[boombachi]

@Wolfiness I don't know about any articles on the subject but you might like to order yourself some 'ear defenders'.

http://www.sensorydirect.com/sense/ear-defenders-1724.html

They are designed for people with autism who are noise sensitive. For resting, ear plugs might be better. Once your parents notice you are not responding to THEM, they might just get the message that the "door thing" really does matter.

I wish you a more peaceful future

 

[Wolfiness]

Thanks, but I already have 3 pairs. I am not new to this.

 

[Dainty]

I can't offer any more help in the "medical explanation" department than others here already have.

But I wanted to tell you how badly I could relate.

My parents' disregard for my noise sensitivity is what ultimately forced me to live in a van on the streets alone, even when I was too ill to care for myself. I'd spend days unable to drive or walk, and nearly died a few times from lack of a caregiver. Strangers saved my life more than once. This way of life was far, far better than having a caregiver with my parents but having all the noise exposure.

I have since realized that being around people who will not respect your wishes is super harmful. Period. You shouldn't need a good explanation, you shouldn't need to prove it. Getting out in the world was such an eye-opener....people who care about you don't demand proof! They either (attempt to) accommodate your stated needs, or they say they can't and they're really sorry.

The ability to control my own environment was key to recovering from the hyperacusis. Living in a vehicle, I could usually get away from any noise that was problematic. When staying with my parents, I couldn't escape the noise and the resulting trauma contributed to my PTSD diagnoses. PTSD and sound sensitivity are, or can be, very closely linked.

To this day, when I visit if they do any sort of controlling or blatantly inconsiderate behavior around me, two things happen. First, I mentally brush it off. Then, I discover I'm absolutely disabled by noises that were completely fine even 10 minutes ago. I mean total collapse, hands over ears, unable to move, horribly traumatized, crying in pain. But not from whatever my parents said or did this time, it's just the reaction to the noise. It tends to continue for about a day or two after, even when I've left the premises and and am not in that environment at all.

Please don't underestimate how badly this could be affecting your health and healing. For me, my recovery absolutely required an environment where I could consent to which noises I was exposed to and for how long. This is also why living with roommates/housemates is out of the question for me. Noise exposure is like someone touching me - if I've consented to it, it means I'm up for it and it'll probably be okay. But if I'm lying there trying to rest and noise exposure happens nearby, it's like someone is touching me without my consent. It feels as traumatic as assault, because of the physical pain involved and the fact that it's being done to me nonconsensually and I can't make it stop.

I don't believe for a second that hyperacusis is psychosomatic. But I do believe that repeated trauma you can't get away from is like POISON to the nervous system. It will worsen pretty much everything and interfere with potential healing that could otherwise happen.

Take care and I'm wishing you all the best.

 

[Wolfiness]

Tx everyone - we had a talk and I think they'll try harder. They do at least believe me which is a big part of it for me.

 

[Wolfiness]

Noise exposure is like someone touching me - if I've consented to it, it means I'm up for it and it'll probably be okay. But if I'm lying there trying to rest and noise exposure happens nearby, it's like someone is touching me without my consent. It feels as traumatic as assault, because of the physical pain involved and the fact that it's being done to me nonconsensually and I can't make it stop.

Totally.

My parents aren't callous, they do their best. I am difficult because I don't like opening up. Partly that's me, partly I think it is how ME affects my brain and instincts, and partly the trauma inflicted by years of people disbelieving me makes me extremely prickly and afraid to explain things and suffer more misunderstanding.

 

[Dainty]

I'm SO glad they believe you and are planning to try harder! I really hope it works out!

For me, I went through this cycle dozens of times, where I'd summon the energy to have an extended talk or write a long email explaining again about noise sensitivities, how I know it's not their intent but how badly it affects me, etc. Each time they would express genuine desire to try harder, now that they understand. And things would be better for a while....before going back to the way things were previously. Gentle reminders from me would help for a bit, until it was no longer taken seriously and they wouldn't stop making noise. I'd start getting attitude that it was unreasonable to request quiet. Then it was time to compose another lengthy explanation to get it through to them. Again.

And I always thought that surely THIS was the time they genuinely understood, THIS time it would last, THIS time I had found the magic words to get them to comprehend.

I, too, thought it was all because I was such a difficult person. After all, my parents love me very much. They also made sure I knew how difficult I was making life for them, and how they are making such HUGE sacrifices to try to avoid traumatizing me. And I tried to be grateful for what I got, because they were trying so hard. I thought any shortcoming must be on my end.

What I've learned since is this:

Sometimes people can try their best and it's still not enough to accommodate a disability.
Also, sometimes people can genuinely try their best with good intentions and still be abusive.​

I hope neither is the case in your situation. But I want to let you know that it's a thing that can happen, so if it does you aren't completely blindsided by it and know you're not alone.

P.S. My mom told my boyfriend soon after meeting him, "I know Dainty's a difficult person but thanks for being able to handle how difficult she is." He literally BURST OUT LAUGHING. From the moment we met he has never considered me difficult, not even through severe noise sensitivity or temporary paralysis issues or PTSD triggers.

 

[TenuousGrip]

Yeah but I need them to keep my door shut.

I didn't read all the replies, but -- in all seriousness -- any way to install an automatic door closer (cheap, easy, effective) on your door ?

I call that a "passive solution." Passive solutions (they don't rely on anybody to actually do anything) are often a great way to go.