First Aid
Hitchhiker's Guide
Some of you older readers may understand the towel joke. Author Douglas Adams published the Hitchhikers Guide to the Galaxy as a radio play in 1978. The Guide's two main bits of advice for intergalactic hitchhikers was to resist panic and to carry a towel. We reckon both bits of advice are a pretty sound starting point for surviving FND.
Remaining calm is the most important thing you can do. Panic makes things worse. This applies to everybody involved.
We also advise you to carry a towel if you need it. A cool wet towel pressed to the skin often helps with seizures. However, the towel is also a metaphor.
We want you to carry on with your lives as much a possible. We want you to work out what you need to do to keep yourself safe, comfortable and grounded. Carry whatever aids you need: take a towel, earplugs, sensory kit, heat-pack, worry beads, weighted blanket - whatever you need to keep you going.
Keep calm, carry your towel and carry on. Please keep living as much as you can. We explore simple approaches to first aid below.
If you are experiencing a mental health emergency right now click this link for a list of Aotearoa emergency numbers.
Here is a list of free tele-health and counselling services
When to call an ambulance
If you have been given this diagnosis, and it fits your symptoms, its probably not a good idea to call an ambulance. You are unlikely to get a good reception from the medics. The whole ordeal would likely be stressful, expensive and make your symptoms worse.
Call 111 if:
the subject is has stopped breathing and/or is turning blue. FND does not cause asphyxiation.
there has been an accident which has resulted in further injury - such as head injury or blood loss. If it is serious and you can't get them to the hospital yourself, get help.
your darling has FND but you have determined that there is something serious and unrelated going on.
Some of our group members wear information lanyards like these with them when they are out and about.
In times of crisis - identify your problem carefully
You need to understand which symptoms are linked to FND and which are not. There is info on this in the section called What is FND?
Most of our people have other medical conditions too. Your darling might be experiencing a non-FND problem. Please do not let the grumpiness of medics stand on the way of you getting the healthcare that you need. If you don't think its FND, get help.
However, if you are pretty sure you are looking at an FND episode, follow the advice below.
Our love for our friends and whanau
We acknowledge how difficult this must be for our loved ones. Symptoms can be distressing. Answers are absent. Suffering can be protracted. At it's worst FND sufferers can be locked in powerful spasms, tetanus like, and unconscious for hours. You wouldn't wish this stuff on your worst enemy. Thank you all so much for your love and support.
Put on our own oxygen mask first
Take at ten seconds for yourself. Breathe, centre and return to business. Those seconds are very well spent and your darling is not in danger as they wait.
Sensory grounding
Maybe at the start of a person's illness, reduce sensory stimulation. Turn off TVs and radios. Calm the room. As your subject learns to cope with their symptoms, they might not want any changes to be made and want everyone to carry on with their day around them. Try to get to know what they need before it happens.
as time goes on your subject may learn to predict episodes with warning sensations such as a tingling sensation on the skin like you were bathing in warm champagne. Pay attention to those sensations and use the information to your advantage. Episodes can be intercepted and prevented but you have to teach yourself how.
If your subject is unconscious you can help them return to you by gently reminding them of their senses. A cool damp towel on the skin, open a window, dab honey on the lips, mist diluted essential oil on the face, sing a gentle song, play their favourite song on the stereo, gentle massage. Try stuff and see what works.
Grounding exercises for all FND symptoms
These are exercises that are designed to rapidly calm the stress centres of the brain. The malfunctioning brain is reset through structured thought that draws attention to senses and/or visualisations.
For example, here is a useful exercise/rhyme for children young and old. This can be verbally led by the first aider and the subject replies out loud, or can be self led. If they can't talk, ask them to think the name of the items that they see, hear and feel:
"I spy with my clever eyes - these five things (name five things they see)
I hear with my clever ear - these five things (name five things they can hear)
I can feel what is real - these five things (name five things they can feel touching their skin)"
Go through the rhyme 4 more times, each time reducing the number of items in the list - these 4 things - these 3 things etc. It is ok to repeat the same list items each time round the rhyme.
There are lots more grounding exercises here.
A few more tools
Here is a booklet that explains techniques for Taking Control of Non Epileptic Seizures.
Here is another resource for children and young people and seizures but it can be used for kids of all ages.