FND Symptoms

[MiniChimp]

Hi! I’ve recently been diagnosed with FND by a neurologist and I would be really interested to know if anyone on this forum can relate to my symptoms. I realise that almost any neuro symptom can be attributed to FND, but would be keen to see whether mine match up with anyone else’s.

me: Male, 40s

Symptoms all started this year and sudden onset, here goes…

tinnitus : constant both sides

Hyperacusis : mostly in evenings

Heightened startle (sound, sight, touch) : mild

Twitching : hands, feet, every day, few times per hour

Coordination problems : very mild loss of dexterity with hands, mild weakness in right hand

Speech : some perceived problems controlling vowel sounds - not noticeable to others. Couple of times where I missed a sound completely. Concerned that this is ppaos and my FND diagnosis will eventually get revised.

Thank you!

Dan

[Lady4]

I read an article a while back, Maria's story rings a bell but unsure.She went on an intense course, and it helped her de-sensitise, will try and find it later.

[Lady4 in reply to Lady4]

But she didn't suffer from sound sensitivity from recollection more touch. Just googled "Hyperacusis" there is a help site for that condition that you may want to check out.

[Shimmyaway in reply to Lady4]

I have sound sensitivity, but no tinnitus. The sensitivity to certain sounds, notably beeping, any noise from a mobile, loud music, and telephone (landline)voices against background noise trigger serious whole body shaking and have to be avoided. I get milder tremors and jerks throughout the day ..and night.

My speech is not currently affected, but a year ago I was stuttering on the phone if there were background noises. Unfortunately I have started to make involuntary anti-social noises, no words, but often accompanied by rib cage jerking on one side. These come as a response to the situations mentioned above or after stretching exercises. So far the medics have offered nothing to help cope with these problems but have done one session of an OT FND intervention, which was mainly a fact finding session. Any offers of solutions gladly welcomed.

[Lady4 in reply to Shimmyaway]

You said tinnitus, constant on both sides?

Definitely check out neurosymptoms.org

With FND symptoms its usually your brain mis-signalling, sounds a bit basic but true. Sometimes we get overwhelmed and can't deal with our emotions and they get surpressed and our brain go into fight or flight mode mis-firing signals, stress and anxiety don't help but unfortunately experiencing these symptoms makes one stressed. I care for a child diagnosed with FND which is challenging but find useful information and links to resources here.

I have been listening to some interesting interviews from The World Migrane Summit 2023. The retrain your pain for Chronic Pain I found good and made several notes. Lots of experts in neurology speaking.

As my other post mentioned:

[MiniChimp in reply to Shimmyaway]

Thank you for replying. I'm sorry to hear that you're struggling to find answers about your ongoing symptoms. It's interesting that the sound and movement disorders are somehow linked - I'd say that mine feel mostly independent, although I will tend to experience all of them a lot more on a bad day. I hope that you find some answers soon.

[Lady4]

There is a bit about reminding yourself every day your body is safe, you are not at harm (in danger), to change the brain from activating the Amygdala (fear and threat) neuro-pathway.The Amygdala neuro centre is triggered to respond to fear and anxiety but also anger/surpressed emotions and sadness/grief.

So practising self compassion, meditation/mindfulness. Having a good nights sleep and healthy eating and exercise all positive steps.

[MiniChimp in reply to Lady4]

Thank you so much for your replies. I am certainly working on my general health and remaining positive. I will take a look a the migraine summit, that could be relevant for me.

[Lady4 in reply to MiniChimp]

You get free access for 2 days on any of the interviews on the first 2 days. All the others you get a 5 min clip unless you pay for a pass (starts at $99). I have watched two and my membership runs out today.

[Shimmyaway in reply to MiniChimp]

There is an article in the BMJ relating to speech and lang difficulties ..

jnnp.bmj.com/content/92/10/...