OT and FND - the therapist you should have on your team

[Lady4]

neurology.org/doi/10.1212/C...

The highlight:

Following a sensory-based OT intervention, 62% of individuals with FND were clinician determined as “improved.”

[Shimmyaway]

Unfortunately my experience of OT for FND was not sensory, In fact when I suggested I needed desensitisation therapy for noise sensitivity the OT said ' Well what sort of therapist does that?!! My reply .. I don;t know, I am not a health professional. Still, if that type of OT works, let's get the OT's trained up...but when will that happen??

[Lady4 in reply to Shimmyaway]

Sensory does help and can ground you, maybe graded therapy to noise could help. Is it that that sets off seizures?

[Shimmyaway in reply to Lady4]

Finding the right sensory therapist is a problem. I don't get seizures, but my reactions to noises (esp electronic ones) are shaking and yelping noises .... .difficult in shops, banks etc.

[Lady4 in reply to Shimmyaway]

Where are you based? Did you search the Re-Active directory I posted, definitely worth checking back every regular as new.

[Shimmyaway in reply to Lady4]

I'm probably a stone's throw from you, with a UK B postcode. I only quickly looked at the directory, as I got the impression it was US based therapists/doctors. Can your resend the link please? Thanks for your help .. I am running out of options!

[Lady4 in reply to Shimmyaway]

Your right, at the time I couldn't see any UK specialists within their Brain Bytes Directory, I will go back and check and let you know.Have you tried noise reducing headphones?

[Shimmyaway in reply to Lady4]

I prefer earplugs. Unexpected noises are the worst .. like the ubiquitous mobile.

[Doglover2016 in reply to Shimmyaway]

I have found loop earplugs works they don’t block all of the sound but reduce the decibels so you can still have a conversation with someone close.

loopearplugs.com/

[Shimmyaway in reply to Doglover2016]

Thanks. I have tried the loop earplugs ..very handy, effective, but fiddly. I am now working on controlled exposure to the offending sounds in the hope of habituating myself. It has worked with music, to some extent with till beeps, .. still work in progress, but not with phones ,,yet , as these sounds come out of the blue, not helped by so many folk using shops as phone booths!

[210272]

I wonder how that would compare to people with a sole diagnosis of migraine? Interesting stuff.

[Lady4]

I guess you could address the triggers with sensory input x

[Lady4]

So jumping back on to this post and as we were signed off from OT recently with no practical help when needed most (thigh spasms/numbness at the beginning of his symptoms and he was unable to get him downstairs). Plus as my son wasn't dx with sensory issues when he was young no support there either.

I have therefore had no choice but to resort to going private and will be getting an emotional and sensory assessment with a full report and recommendations, which will help with educational needs too. Luckily I found someone nearby.