Occupational therapy intervention for FND

[Shimmyaway]

Would anyone like to share their experiences of occupation therapy intervention for FND, especially in relation to the mitigation of shaking, vocalisations, and hypersensitivity to noise.

How helpful did you find it?

[LEEJUNFAN]

Hi there,My wife hasn't had therapy for noise sensitivity, but I'm curious as to any replies you receive here, as my wife is super sensitive to loud noises with her FND.

We live in a ground floor apartment and we've had the ceiling soundproofed by adaptations and she still has noise sensitivity when hearing the above tenants walking and they have it carpeted too.

I'm fighting the housing to have her rehoused into a bungalow but the age restrictions on bungalows are the issue.

I've got ME, so I'm noise sensitive to an extent.

Any tips on what else I can say to the housing would be helpful from others here.

Interesting questions you've raised and I hope you get some good responses.

Best wishes.

Tony and Kim 👍

[Shimmyaway in reply to LEEJUNFAN]

Thank you so much for your reply... I too shall be very interested to see what people have been offered for the symptoms mentioned. I feel the OT intervention is too vague, too passive, and offers nothing specific to deal with the noise sensitivity or other symptoms.

I am 'doing' a desensitisation programme, set out for me by an osteopath/researcher, who by some chance miracle had had the noise problem himself, and whose research involves reaction to stimuli, none of which I knew about when I went for osteopathy. The programme is working, and I can now listen to music again but tel rings and beeping are big NO Nos' and both elicit vocalisations and/or shaking from me. I think your wife would benefit from a noise desensitisation programme if you can find a good therapist and should she have intense body reactions to noise, some visual evidence may be convincing for the housing dept.

Let's hope we get some positive ideas from these posts.

Shimmy (in UK)

[bookish in reply to Shimmyaway]

Hi, this is interesting, thank you. I used to be triggered by sudden noises and lights, increasing my pain (fibro, and an RSI diagnosis which has been rediagnosed as small fibre neuropathy), as well as by live music, like a vibration reaction, and by touch, even almost imperceptible touch. I stopped going to concerts as the whole thing was too much input for me to cope with. I wasn't offered anything to help with those particular symptoms, but thinking about it now, they had been happening for many years, with frequency and severity just increasing as my stressors did. Over the last few years I have improved a lot, but I have made many changes for myself - diet, lifestyle, meditation, tapping (EFT), breath work, supplements. I have a book by Datis Kharrazian which I found useful, called 'Why Isn't My Brain Working?', which talks about the oversensitised and hyperreactive nervous system as here youtube.com/watch?v=5zU0K2C...(Not working as expected?) He speaks very quickly so you may need to slow it down, but the book is worth a read. I found this chap interesting too youtube.com/watch?v=hJVkrx2...(Not working as expected?) . There are some flashing lights/movement, and loud sound especially at the end. Best wishes

[Shimmyaway in reply to bookish]

Thank you for your contribution and the book reference, which I will take up. I recently came across an article in pub med, entitled, Magnesium and Hearing, relating audio hypersensitivity to lack of magnesium. Ever heard of that?

[bookish in reply to Shimmyaway]

I hadn't but will investigate, thank you. I certainly made considerable improvement using magnesium (oil, on skin), but put that down to a later-discovered slow COMT SNP, COMT being a magnesium- dependent enzyme. Potentially throws out your neurotransmitter levels and catechol oestrogens and sometimes linked to fibro, and similar, as well as the higher-for-longer-than-ideal partly-metabolised oestrogen chucking a spanner in all sorts of works. I always had oestrogen problems (couldn't really cope with endogenous and exogenous was a nightmare). Maybe my increasing noise sensitivity was related, especially as stress depletes magnesium anyway and my sensitivities got far worse with significant life stress over some years. Magnesium is also a methylation co-factor. Cheers

[SNOW10 in reply to LEEJUNFAN]

I wear Headphones they use to shoot guns in. They sell them at Walmart like 10 dollars and some change. They comfortable enough and adjustable to wear all day cause I am very sensitive to noises too. I was using ear plugs but these are better. They have been a life changer for me, I hope they would be for her.

Gun protection muffs

[Lady4]

We never got offered an OT appt until we didn't need them, 14 mths later from recollection. I needed help getting my son downstairs, he used to get stuck coming down as his thighs were constantly going into spasms and at times really intense. I recall one time it took nearly two hours to get downstairs and not long after I had struggled to get him into a wheelchair, transferred into to the car and struggled then to get the wheelchair in the back, only for him to tell me they had stopped half way to school, then a normal day, be it achy legs.His is sensitive to light still but can't really think how OT could assist but made sure he wasn't taken off the list.

[Shimmyaway in reply to Lady4]

I too can't think how OT can assist with FND. especially when no mobility problems such as your son unfortunately has are present. .My experience of neuropsychiatric OT assistance to date is talk and more talk, with no practical advice or action plan on how to deal with hypersensitivity to heat, noise , touch and shaking. Desensitisation programmes can be devised. I do think a non specialist OT could offer you sound practical advice on the best ways to move your son when he is struggling, but by now you have probably worked it out for yourself..so all credit to you.

Best wishes

[Lady4]

Think he is over sensitive to the air too, came out with really strange comment once it was starting to get dark.Well I know if his legs are numb he can get downstairs, yet he can't stand at the bottom. Thanks.

I did once read an scticle about a girl for had heightened senses, even a feather. Wasn't for the faint hearted as really took her to the limits of pain but inspirational and more importantly helped desensitise.

[Konundrum218]

I had really good success with OT, but also PT. After I was diagnosed I went into a physical rehab program at the Mayo clinic. Lots of multitasking and distraction techniques to get the body to move "like it should". I had a relatively short time span between symptom onset, diagnosis, and treatment, in all about 4 months. I really believe the earlier the diagnosis and treatment the better off someone will be but as I'm finding out it all kind of depends. After being discharged from the rehab program, I can do most of the things I could before. Walk, run, jump etc.. I still experience some symptoms nearly everyday but I am probably 90-95% of what I was