PTSD and POTS are completely different diagnoses, but for me they do seem to feed into each other. With PTSD I suffer periods of dissociation – this can range from a few hours to an entire year (which was pretty horrific). With POTS I suffer from ‘brain fog’ – essentially when I am on my feet for too long, my body can’t pump up enough oxygen to my brain, which leaves me dizzy, spacey and feeling slightly like I’m on another planet.
Both of these symptoms lead to a very similar place, and on occasion I struggle to differentiate between the two.
For those of you who are unaware of dissociation, it is essentially a coping method that most of us use to some extent. In mild forms, its the feeling of arriving at a place without remembering driving there – your brain gets you there, but you aren’t fully conscious of it. You may be daydreaming and skip a few minutes in a class, or become a bit numb during a crisis. This is all a way of your brain being able to sift information, and enable you to cope with a variety of situations that may otherwise be overwhelming.
Dissociation becomes a problem when it is it its more severe or long lasting forms. With PTSD you develop ‘triggers’. These are situations, words or feelings that can trigger you to dissociate fairly instantaneously. The dissociation may happen if you hear a loud noise, are around people, in difficult situations or your emotions begin to overwhelm you. Almost anything can fling you back into a state of numbness, and its a case of riding the wave and waiting to come back to the real world.
Describing my own dissociation is something I have found difficult to pinpoint. It feels to me very natural, as it is something I have automatically done since I can remember. It is like a switch flips, and all of a sudden I feel fuzzy. I feel that I am not real, and rather weirdly I loose sensation in my body – usually its my hands at first, but this tends to spread to my arms, face and sometimes legs. For me, its the biggest pointer that I am dissociating. When I am in that space, I can function, but I can’t quite communicate properly. I become quiet, and although I can hear people talking to me, I tend to find it hard to understand them or form an answer to speak back to them. It is literally like I am underwater – we all played that game as a child trying to talk to each other in the pool – its almost impossible to understand. That is what its like. When that switch flips, it is also like I am suddenly at a different angle in the world. Its like somebody has picked the real world up and flipped it a good 30 degrees – everything is just off where it should be, a little bit like stepping into a Dali painting or some Gaudi architecture. Everything inside me is numb – dead. At my worst I felt like I wasn’t real and that continued for a year – it wasn’t fun.
With brain fog, the feelings are slightly different. I become distant. I find that i can’t process information at all – asking me questions when I am on my feet for too long is a futile endeavour. Things like shopping become an issue – I have often gotten home from a supermarket and not remembered what I have bought – it was like a game of surprise shopping every time! I am also more prone to wobbling about, falling and fainting. Often (before I got a mobility scooter) I would end up sat in the middle of the pavement waiting for my body to sort itself out, or ending up sat on the floor in the middle of shops when out – you have to get over the feeling of looking like an idiot if you have POTS, thats a big lesson I’ve learned.
The similarities tho are difficult. The feelings of being spaced out and fuzzy are tricky to tell the difference between, and i often end up feeling sort of numb whichever issue is playing up. With this in mind, unless I know I have been triggered by a particular situation, I tend to play a game of elimination.
I know that with POTS lying down is my best friend for brain fog. If I can’t lie down, then salt is the key. As much as I dislike it, eating a fair amount of salt in one go does seem to get the brain for under control – I now carry around little salt sachets, and have utilised them several times over the last couple of weeks! Wearing compression garments helps (tho they are uncomfortable for me), and I have noticed that I am much more able to be on my feet when those are on without brain fog becoming a major problem.
If those tactics fail, then I know that PTSD is the likely suspect. Usually this means I need to take myself off and find a place to ground myself. Texture is a massively useful tool for me (it differs for everyone), and in particular when I was in group therapy, I got taught to walk barefoot in the grass – teaching myself to focus on finding a sensation is often the key to unlocking the door. Trying to make yourself aware of your surroundings through sight and sound are also really useful tools. For me it can take a huge amount of time depending on the trigger, and the aftereffects can be pretty exhausting. I tend to end up getting emotional when I manage to come back to the real world – for me a lot of dissociation is meshed up with unexpressed feelings of loneliness, fear and sadness. I think my body uses it as a way to keep me safe until I can cope with facing things.
Between the two, I end up fairly confused and pretty exhausted 99% of the time! I am slowly learning to differentiate between the two, but I am sure that POTS makes it much easier for me to slip into dissociation – I am already half way there any time I’m not lying down!