New to fnd Gemma

[20001962]

Hi Gemma

Your symptoms sound quite typical I think for fnd. I started falling/tripping up and was having joint pains. I suddenly developed left sided facial spasms which then spread across my entire face. It's natural to find it distressing when you suddenly experience these symptoms.

I had a period of 5 weeks in hospital and suffered with multiple seizure but was alert and aware. I also lost my ability to talk at times and my eyes would shut and not open for hours.

I take sertraline and after four months returned to work. I sometimes have relapses but staying positive is key.

Try mediation, pacing your day, getting proper sleep, avoid alcohol. I practised talking and singing to strengthen my speach. Try mental challenges to keep your brain active. If one side of your body is numb or twitching make purposeful movements with the other side of your body.

Hope this helps x

[Dugstar]

Hi hope you don't mind me asking how did you find sertraline ? I have NEAD i can't work at the moment too many seizures but its the lights and noise at work im extremely sensitive to and causes my fits at work !Dr has given me sertraline he says will desensitise me is this true ? Thanks

[20001962 in reply to Dugstar]

I was started on sertraline during my first weeks of being in hospital and it works really well for me. I still have to pace myself but my sensitivity to noise etc is much improved and I have been seizure free for months.

[Dugstar in reply to 20001962]

Thankyou thats really helpful ☺

[Jenpow in reply to Dugstar]

I had another eye test and now have to have a tint on my glasses which has helped enormously. Before I could be screaming if anyone opened my blind as it hurt my eyes so much. Also I've started using ear plugs but came across a person with neads when I was out with my care company recently and she said she uses ear defenders when the noise gets too much. I wish you all the very best and hope you find some ways of dealing with it sooner rather than later.

The fact you are still working is a huge achievement in itself. I hope you realise that you are obviously a very strong person and hope you find some ways to get round your difficulties. I had to give up several years ago as kept having accidents that I dodnt always remember how they happened. At least I know now so hopefully given enough time I will learn coping strategies. Unfortunately with all the diff symptoms I have I dont think I will ever work again.

I just wish there was a much better understanding of this condition as apparently it's as common as ms and parkinsons but no one I've spoken to has heard of it. My mum looked it up briefly and said if I had the right mindset I would get better and be cured... if only!!

Warm wishes

Jen

[Dugstar in reply to Jenpow]

Thankyou I've had 3 fits since starting sertraline but that's a big improvement 👍 but only took my sick note into work &had a fit so really not sure if I can go back to work but I will keep trying doesn't help as due to covid all the windows are blocked so there is no natural light coming in its just artificial light which triggers my fits xx