Anxiety and Reflex Anoxic Seizures

[nic0889]

Hi there,

I am worried about fainting and fitting every day and this is made worse by certain triggers.

Background: Ever since the age of 4 years old I have fainted and fitted (RAS). It used to be random occuring and then as I got older when I felt very anxious in relation to being squimish. With each RAS before I was about to I would have a huge panic and everyone around me would get really panicked too, then after I fainting upon waking up and there was almost hysteria again, ambulances were called, everyone around me would be very panicked.

Now as an adult when I worry I'm going to faint I flashback to these awful events and panic myself, thinking how awful it is to faint. I don't faint half as much but I have fainted 4 times in the space of last year and now have a heart monitor under my skin (loop reader), this doesn't help my anxiety about fainting.

I feel anxious a lot of the time and the consequences of fainting feel so awful, I avoid a lot of things, I have safety behaviours of making escape easier and generally struggling day to day. I'm worried I have PTSD and I don't know what to do to help myself next. I will try and see a therapist but in the meantime I am very anxious.

If anyone has any tips I would be so so grateful.

Thank you

[YellowSocks]

Bless you! It does sound like your early experiences have been quite traumatic and left you with this high anxiety about your fits.

My mum and I have it and have both developed claustrophobia as a result of wanting an easy exit and also to be able to lie down in lots of space if it does happen, so crowded spaces naturally panic us.

I’ve also developed a real squeamishness about blood in recent years, but it hasn’t been an actual trigger thankfully.

I definitely agree it’s a good idea to get therapy but in the mean time it’s good you’ve reach out for help. I don’t have lots of help to offer just one or two tips but at least want to help you feel not entirely alone!

Our main tips are having easy escape strategies but it sounds like you’ve already got those as well.

Another would be a therapy strategy I’ve previously been taught that helps with anxiety towards anything. Often a huge part of anxiety is this spiralling almost irrational terror of the worst case scenario to the extent that you don’t even fully acknowledge what you’d actually do if it came about. I was taught to look at anxiety inducing scenarios with a scale in mind of ‘worst case scenario’ ‘best case scenario’ and most importantly ‘most likely scenario’, and to then really acknowledge what those would each be and if they did happen, how you would handle them.

For example out in public you may fear having a fit and so you’d have to take a moment to breath and go ‘right, what are the possibilities’. Worst case scenario is obviously having a seizure, it feels horrendous and people around you panic. If that does happen, is it actually then end of the world? No. Yes it feels horrid and it’s not great when people panic, but you know you’re able to cope and get through them, the feeling doesn’t last forever and usually people can be very caring and understanding as well, especially as you know what you’re condition is so you can reassure them it’s just a heart condition you have and then need to leave you lying down until you feel ready to get up, and they can google it to learn more about it.

Best case scenario would be no seizure happens and everything is well, obviously this would be great and it wouldn’t impact your day and it’s nice to know this is a genuine possibility.

Most likely scenario is actually also that you won’t fit and everything will be fine, seeing as you only tend to have then a few times a year, so statistically when in public the odds are in your favour of not having one. It is likely you’ll feel a little bit of panic and have to calm yourself down but this is understandable and possible to do. Just find a good spacious spot to sit and breathe and reassure yourself that it’s not likely to happen, and even if it does happen it’s not the end of the world and you can get through it.

I’ve found this strategy has really helped with all sorts of anxiety inducing scenarios in life, even though it sounds fairly straight forward! It’s been a tool to create a much more rational attitude and approach to situations and has helped me have the courage to get out there more and to also push the boundaries of my comfort zone so I’m very grateful I’ve been taught it. I think the key is in truly facing properly how you would handle the worst case scenario, as well as noting that it’s not the most likely outcome, and also that the best case scenario is also a possibility.

Hopefully this can be a tool that helps you out! Fingers crossed and wishing you all the best. Hope that your therapy goes well once it starts! X

[nic0889 in reply to YellowSocks]

Hi YellowSocks,

Thank you so much for taking the time to reply to me.

I am sorry you and your Mum both suffer but that is good you have each other that understands. I will definitely be exploring therapy as soon as I can.

You are so right and that has been really helpful to think of different perspectives, its so hard when I am trying to do it all in my own head and no one around me quite understands it. I like the idea of most likely scenario vs worst case etc and also the actual odds of it happening are so slim with all the times it doesn't happen.

I am going to jot down those points you have made so i can re-read and come back to them.

Again thank you so much , it helps hugely not to feel so alone with this.

[jesterred]

Sounds pretty awful! At the age of 37 I was finally diagnosed with RAS. In fairness, I've been lucky because I've only ever had 6 episodes in my whole life and I realise people get them far more frequently. But I had a batch of 3 in the space of 15 months and it brought things to a head.

I found CBT immensely helpful. I think everyone has triggers, and realising what those are and reprogramming your thoughts is really helpful.

A big revelation I had when it came to anxiety and RAS (or anxiety about anything really) is this:

What's causing your anxiety is something that's been created in your mind. If your mind created it, it can also "un-create" it, or it can create something much more powerful and positive to replace the thing that causes anxiety.

I would definitely recommend therapy. In terms of what you can do in the mean time, I would recommend looking at some good meditation apps (like Calm) and looking at some free CBT resources.

Something that also worked for me, but I would not recommend as I don't understand it well enough, is hypnotism. I used to get anxious about studying, for example, and had an RAS episode in an exam once. Having identified my RAS and knowing I had some exams in my post-grad, I worked with a qualified hypnotherapist who was able to help me re-program my thoughts and feelings about studying. Zero incidents since, and never been close to having any issues since related to exams or study.

But I would say speaking to a good therapist would be the main thing. I hope you get an appointment soon. But take heart, this is something that with the right help, working on yourself and being mindful can get far, far better. You can have a perfectly happy, healthy life eventually.