Reply time

[Renwick1]

Just wondering how good this site is as people take a long while to reply

[muckingfuddle]

Hi hope your OK ? Not long been on the site myself but am finding it very useful I don't always reply to a post I have read as sometimes I forget other time I relate to a symptom or problem or even an area to research for help or guidance and grab the bull by the horns before train of thought has gone. As much as we all want help support or a reply yesterday 😛 I accept that we are all in similar boats struggling to get our heads round things so replies may take a little longer but remember you are not alone😁😁

[DNE92 Moderator FND Hope UK]

HI

Sorry if it seems that coming to an FND site can still leave you feeling unheard in limbo land. I find people are really good overall - just sometimes questions etc slip through the net. But I think that many people do read posts but do not always feel up to responding or perhaps feel that others have already said it.

I'm Lou and my biggest plague of a symptom is daily pro-longed seizures. Knackering. I try to get on with things as best I can and I am just a pig-headed Irish woman. That has it's ups and downs - way too many A&E visits when I simply appear lying on the ground to unsuspecting strangers out for a nice walk! I'm very bad at taking advice from my family but I am trying to control my stubbornness because I now realise that my family are constantly stressed if I go out and about by myself. But it is a hard line to tread because FND has stripped me of so much of my independence and spontaneity that I need to keep pressing on. We haven't found the right balance yet (see there's the pig-head still) but at least we know there has to be one.

Stick with the site - it can be such a life line and for me it's a place where I can speak and know that others understand where my family cannot, through no fault of their own.

Cheers

Lou

[VivienneWaterworth in reply to DNE92]

Hi Lou

I always feel very sad when I read people's stories, especially where FND impacts so badly on your daily life.

I have non epileptic seizures, but I don't lose consciousness, and I'm even able to drive myself home, for up to 15 mins, if one starts while out on the road. It helps that I usually have a passenger, and I learned 20 years ago when I thought they were just cramps, to lock the seizure out of some parts of my body for a while, with that part of the intensity of the seizure going into the unlocked parts. Then when the pain gets too much, I somehow switch the limbs that are locked/unlocked...so if I'm driving with my right hand and the left is suffering massive cramps and even violent uncontrolled movements, I can suddenly switch and drive left handed with my right hand going ballistic.

Of course, I would prefer to go lie down...lol!

Have you seen the website fndhope.org ? They have some tips for recognising when a seizure is about to hit, and also for how to reduce it's severity or even prevent it from occurring, if you are lucky. Since I don't lose consciousness, not all of the tips are relevant, but their distraction techniques do help. Also calming the brain right down so it doesn't have to think at all, can help. Or completely changing what you are doing.

I have found that the Touch and Hold version of the EFT process as outlined on the tapintoheaven.com website, also works for me in reducing the length and severity of the seizures. I press each of the Tapping Point on the printable chart, and just breathe really deeply. Initially it makes the seizure a whole lot worse, but only for two or three breaths, then it eases off so I can move to the next pair of tapping points and repeat the process.

Elsewhere on the internet, they recommend shortening the process (don't - you need to work with all the points, which are essentially points on the Chinese-meridians), and they have various words for you to use. I don't bother with words, or I just keep repeating 'this seizure, I’m ok. it's all ok' over and over. I figure that my mind is already focused enough without distracting it with what I 'think' might be the problem.

Anyway, good to hear from you. I hope you can find a way to keep independent without endangering yourself too much. (I just thought about it - landing in a writhing heap in a grassed area outside would be far less likely to hurt you than landing in a heap inside on a hard floor, with sharp corners of furniture to interfere with your falling process.)

Vivienne in Australia

[VivienneWaterworth]

I periodically come here and answer any questions that either pique my interest or haven't been replied to yet...and other times I'm really not in the right headspace to come here for weeks on end. It's a fine line. Some of us get triggered by these support groups, others live on them and for them.

Have you joined one of the Facebook groups? (Search on FND Hope.) That's where the real action is and there are a lot more active people there than here. There are a variety of groups for different tastes, and for different localities as well. I used to be active in the main group, but these days I'm mostly only active in the FND Hope Aussie/NZ Facebook group.

This group is more designed for those who don't like Facebook, but I've never really felt any sense of community here, which is the opposite of Facebook where there are some very strong communities.

I guess it's what you prefer... Best of wishes.