u/CriticalPrune5420

I don’t really go out alone a lot because of my fnd symptoms and am worried what others will think and do/not do to help as I have often been told when I have an episode I can seem drunk. Most of my bad episodes consist of slurring my words or losing my speech all together, my eyes are heavy, my limbs go weak or ‘switch off’ in bad cases etc.
it really worries me to think if in public I can just be passed off as being drunk and out of it instead of getting help, hence why 99% of the time I have someone come with me but as a nearly 20 year old man it really bugs me to not have independence anymore. I was thinking of getting a card in my wallet so if I feel anything coming on I can just take it out and hand it over to someone that says ‘I am having an episode with fnd’ but I’m not sure if that works in the real world. Does anyone else have ‘drunken like’ symptoms? How do you get support or is it just having someone with you? Thanks

Im on t gel and have been for the past 2 years, in January swapped from clynxx pharmacy to smartway as I was told it would be cheaper, it wasn’t. Im now thinking of swapping to injections as it’s more convenient and cheaper. Before I go ahead can anyways give me rough estimates of how much injections are or if they have found any of the other pharmacies to be cheaper. I’m paying around £70 a month for gel atm. Was about 130-140 anyways for two months with clynxx so not too bad. But still slightly out of my budget!

Does anyone else have things that don’t fully help, maybe just in my head it’s comforting to think it’s helping, during episodes? I tend to ask for a can of coke or sour sweets as I find the tingling sensation ‘wakes me up’ or kinda helps me find my senses again as during most of my episodes I loose sensations so a cold fizzy drink or sour sweets kind of feels like it’s helping even if my episodes carry on.

Now reading this back, I’d say it’s more of a comfort thing hearing myself explain it, but still I wonder if anyone else carry’s things around to help and/or feel more comfortable.

Not sure if this is a stupid question but what am I actually paying £5 for under ‘referral pharmacy’ I used to just pay the £30 a month as usual but I never questioned the extra 5? Thanks

I haven’t had any lessons or looking into anything as of yet all based on the fact I don’t want to know if I can’t drive because of my fnd. In my mind not knowing if I can or not and not finding out is better than trying because I don’t want that to be 100% not an option just a decision I’ve made not to drive. But I DO want to drive I would love the independence and it has always been on my mind, I’m basically asking for everyone’s experience and thoughts on driving if you can or can’t and why, I know we all get different symptoms so would be nice to hear if you can drive and what your symptoms are generally to get a little insight into if I should just bite the bullet and go for it. Sorry if this post is a little negative but I haven’t told anyone that I’m worrying about this and feels good to rant for once!