Hi everyone just looking for advice feel like a! Getting nowhere and just wondering if anyone is in same boat ?

[Chantellemc]

Hi everyone , I am 25 years only had this for 2 year now first they have put it down to Bels palsy, now hemi facial spasms doctor has been great hospital not so good my right eye randomly closed up my upper up was twisted and pins needles on my face now have neck spasms and pins needles on my right arm they brush it under carpet or you see different doctor at hospital each time my eye has now been closed two year that April there and seems to be getting no where no answers and just makes you feel drained thinking is it with the energy fighting with them I can't go near flashing lights either as makes my eye twitch and feel like everyone looks at you weird outside 🙈 has anyone has this and did your eye like open again like fully ?

[LEEJUNFAN]

Hi there,

So sorry to hear of your symptoms, and my wife, like you, has eye spasms, especially with flashing images, which she avoids.

If you can have your partner place their hand over the eyes when they spasm, and lightly massage them, it may calm them.

I do this and it works.

Apparently it helps calm down signals.

Hope this helps.

Wishing you all the best.

Tony 👍👍😊😊

[Chantellemc in reply to LEEJUNFAN]

Thanks for getting back to me Tony ,

Will defiantly give that a try Thank you

Much appreciated, Sorry to hear about your wife also yeah I avoid flashing lights completely now to just feel like no-one understands and they feel like your just making excuses for not going out places etc, but it's horrible being out and everyone looking at you weird and the fact I don't really understand the condition and that I've been told so much diffren t things

Sorry to be a pain but is her eye fully closed also or is it spasms ? They have now put it down to f.n.d not to sure the ins and outs but fingers crossed thankyou

[LEEJUNFAN in reply to Chantellemc]

Hi Chantellemc,

Yes, both of Kim's eye's can close at the same time, sometimes just one.

She takes Bacloflen, twice daily, which was prescribed by her Neurologist in 2012, when she was diagnosed with FND, aged 34, after suddenly collapsing whilst we was on a day trip.

It's such a difficult journey with FND, good days and bad days, as it's so unpredictable in it's symptoms.

Where do you live?

Are you getting support from your GP?

You're so young, and Kim can identify with you and how you feel, as for her, it's been life changing, as for many others, and you have to learn to take one day at a time and learn to pace yourself, which isn't easy if you've been very active.

A good support network and a good family helps, if you're lucky to have it.

Wishing you a good day.

Warmest wishes!

Tony and Kim. 😊😊👍👍

[Chantellemc in reply to LEEJUNFAN]

Thanks again Tony& kim

such a shame that's horrible tell Kim I was asking for her also and strange now one moment can change her Ilive forever keep strong kim, I also have been gave Bacloflen 2x daily however saying due to mood swings they want to stop this 🙈

I live in pollok in Glasgow

my doctor has been ok not seen the! Since diagnosed last week , I know to take it slow now and each day as it comes as it changes so much walked out !y job last week due to just mixed emotions after 7 years woking in an after school just couldn't focus and felt everyone was just constantly looking at me strange as my right eye is closed over and can't open it unless I pinch it open 🙈

Tell Kim I was send her warm wishes also and I will continue to try pace my self taking things a day at time

Thank you both 😊