PTSD from an anaesthesia awareness trauma

Chelle72 · ‎24-11-2014

I was diagnosed with PTSD recently due to a traumatic event when I was 2.5 years old and its been the most horrendous and strangely empowering journey. Memories that we block usually come back, however hard we try to keep that door locked tight. I realised that my body was always trying to remind me of what happened but I always stopped it until last year when, during an incredibly stressful period at work, those memories refused to stay in that black hole any longer. My trauma was what they call "anaesthesia awareness" and happened during a tonsillectomy. It has been a lonely journey because there is very little information and support for people like me. I do know that a lot of sufferers commit suicide and I can understand why. Sometimes it felt like I was tiptoeing through a minefield, defusing bombs (memories) and wondering if the next one was the one that would blow up in my face, the one I didn't survive. For the first time I was afraid to go to sleep because I naively believed that I could control my memories/thoughts while I was awake. Yes I thought of suicide, because trying to escape internal pain can sometimes make you feel like that is the only option. It isn't but it can seem like a blessed relief until you realise the pain it will cause your loved ones. It gives you the strength to get through one more day, and then the next... I'm lucky I guess in that the panic attacks come in the middle of the night and so don't affect my work. This trauma affected me in so many ways, a personality was created out of unbelievable terror and I wonder if the innocent little girl is still in there, the one who doesn't know fear and can feel joy and freedom with that fear constantly lingering in the background. My way of coping was to try to control everything around me, I felt it gave me a false sense of safety and when I got older, alcohol - it made the fear go away - temporarily at least. The trauma stopped me having a family as I couldn't be around young children, they terrified me and if they were upset or screaming it was even worse. Maybe its because it forced me to remember a little girls' internal screams that no one could hear.. My journey isn't over but I am getting closer to the end with the help of a wonderful psychologist and an amazingly supportive husband. I just wanted to say if anyone else is suffering from a trauma and internal pain that is threatening to overwhelm you - please don't despair - there is help and there is hope!

Doolhof · ‎25-11-2014

Hi Chelle,

Thank you for sharing your story. It has been very interesting to think about your journey and how such an experience can effect people.

So many people we meet and know are going through their own turmoil and emotional journey, and some may not know why, or how things became that way for them.

I wish you well with your journey of recovering. Having a supportive husband, family member or friend makes a huge difference as well.

Reaching out to the medical world helps also. It is wonderful you have a great psychologist.

Wishing you well with your recovery.

From Mrs. Dools

Chelle72 · ‎02-12-2014

Thank you for your reply Mrs Dools, I wish there was more support for people like me but I guess PTSD has very similar symptoms no matter what your trauma was. Like everyone I have good days and bad, when the good days are around its like I'm completely free of it and when the bad days come its like I'll never escape from it. Just have to ride out the bad days and remind myself that they too will pass.

One thing I'm curious about is why the physical body memories are stronger than the mental ones sometimes - its the body memories that trigger anxiety attacks, the mental memories just make me sad.

Cheers

Chelle

Doolhof · ‎03-12-2014

Hi Chelle,

In my first reply to you, I don't think I really grasped what you were going through. I was wanting to respond to some people to keep my own doubts, fears, concerns and depression at bay.

Are you saying that as a child you had a tonsillectomy and during that time you could feel the pain of the procedure both physically and mentally? And now that memory has manifested itself into depression and anxiety?

So for you the physical body memories are worse than the mental? I have trouble understanding that, as my problem is mental/emotional and due to my brain racing away with thoughts I become more depressed and stressed and then my body aches.

As you wrote, we all need to find ways to ride out the bad days! I know that sometimes it is easier said than done though. For me, I feel like I would like to get off the merry go round for a few days, rest, catch up with stuff and then get back on with life.

That is not possible, so I need to make the most of each day where and when I can.

I hope you are able to find a balance and ways to make the bad days not seem so awful and to make the most of the good days.

Cheerio for now, from Mrs. Dools

Chelle72 · ‎17-12-2014

Hi again Mrs Dools,

Yes I was conscious during the operation but paralysed, that's what makes anaesthesia awareness so horrific, not to mention the drugs they give you make you forget what you are there for, so for the person suffering through it, it feels like you are being tortured. My mental/emotional memories can be pretty bad and sometimes they come without a physical trigger but a physical trigger will ALWAYS bring back the fear and anxiety. Like most people who have gone through trauma at a young age I became very hyper-vigilant and this can lead to the brain never learning to switch off (running away with thoughts/memories). I learnt to read a lot, when my mind was occupied it wasn't so bad because I was focused on something else. It was in the quiet moments that my thoughts tended to run unchecked. People have said meditation works however I found it quite hard to do, probably should have practised more. I guess you just have to learn to catch your thoughts and try and redirect them (easier said than done I have to admit). Find some method that works best for you - listening to music, reading, exercising, meditating, painting, playing with the dog, cooking or baking.... I don't think there is any right or wrong thing to do. Whatever works.. I have found painting which I've never done before is great because I am totally focused on it and nothing else and weirdly enough I enjoy holding dinner parties - Its something I look forward to and I'm focusing on others so there is no space in my head for negative thoughts to intrude. I also have my fall back ones of reading and listening to upbeat music.

However when a physical memory is triggered it is really hard not to be paralysed by fear - I'm trying though.

I hope you can find a way to stop those (I'm assuming) negative thoughts and the aches that come with them.

Best of luck 🙂

Chelle

Doolhof · ‎17-12-2014

Hi Chelle,

Great to hear from you again and many thanks for the explanation of what you are suffering from.

I like a lot of your suggestions as to how to cope and make the most of your days. I too enjoy painting, not that I create any master pieces, and that doesn't bother me at all. I like to splash the paint about on the canvas. I sometimes have an idea in mind as to what I would like to paint.

I also like making things out of material. One year I made hand bags, they were a lot of fun and all my family and friends receive4d one if they wanted them or not. Ha. Ha.

Usually at Christmas I like to make some kind of decoration or wall hanging. I haven't managed to create much this year, so hopefully next year I will have more time to do so. It has taken me a lot of time and effort to establish our garden here. I have enjoyed it even though it has been a lot of very hard work at times!

Books are good too. I do like to read and especially enjoy other people's travel stories. I enjoy reading about other cultures and countries. Or feel good stories about animals.

Wishing you all the best with your health as well.

Cheers for now, from Mrs. Dools

A_Tech · ‎05-05-2015

Hi Chelle,

Firstly I feel a massive need to apologise for what happened to you, as anaesthetics is what I did for a career until PTSD.

Anesthesia Awareness IS real!! There is no desputing that, papers have been done, research is still going on today because it's so unknown as to why it happens to some people and not others.

Im sure nothing I say can bring much help or comfort, but I hope you know that anaesthetics have come a very long way particularly in the last decade.

Years ago, it was very much a one size fits all approach, far from ideal, but that's because even today we still don't fully understand how it works at the cellular level it's just that now we can now target specific drugs and doses based on body weight etc.

What I really would like for you to know, is that if in the future you require more surgery, please don't be scared!!

As long as you let everyone know, but ESPECIALLY the anaesthetist that you have had awareness before, there are specific medications we use now, but also a brain activity monitor. There are two main ones, BIS and ENTROPY, if it's not suggested to you then please ask for it.

It looks like a long stip or sticker that sticks across your forehead. It has little Velcro feeling spots that are the sensors.

I worked in a trauma hospital for the last 10 years (hence the PTSD) and I have personally never come across a case of awareness, but know that there have been at least a couple verified cases in our hospital.

Research is still being done as to why most people respond as expected to an anaesthetic, but there is a small population that don't. Some think genetics but I really don't understand that side.

Mostly, I wanted to say to you that I'm so sorry! I know I did my job to help people, if I ever knew I was responsible for awareness I would be devastated!!!

Please know that things HAVE changed. Also know that aneasthetists especially are all on board with this. They know it's real too.

If you ever have any questions about anaesthetics I would definitely love to help.

I hope my rambles have been of some benefit and not made things worse.

Best wishes xx

Chelle72 · ‎06-05-2015

Hi Gas Tech, it's great that you cared enough to take the time to reply. I really appreciate that. I have had surgery a few times since and have not had a problem, since I had blocked the memories so completely I wasn't scared however one thing did bother me a lot and that was a premed. I hated how it made me feel and refused to have any for any surgery.

In my case, something happened the night before the op, they wouldn't let my mum stay when I was admitted and they had to call her back the next day as I was catatonic - I still can't remember what happened to put me in that state. It took about 4 hours for my mum to bring me out, they gave me a premed and when I was sleepy an orderly whipped me out of my mum's arms and straight to surgery. Anyway I believe the reason for the awareness was that they used a muscle relax injection and only put me under via gas which, since I believe I was screaming so much, I probably didn't breathe in enough and the muscle injection prevented me from moving - or maybe I was and they just didn't care. It was 1974 in a country hospital. There is a great article by a Danish woman who had this happen during emergency caesarean and her journey to recovery with the anaesthetist she had - they healed each other. "Through and beyond anaesthetic awareness" or something like that.

Obviously I don't like anything that makes me feel like I have no control over my body - pain medication etc. Certainly an unusual way to keep off drugs.

I was a radiographer, have moved in applications now but I understand in a small way the reason for your PTSD. Such horrific things that you see in emergency. I can still remember my first trauma/deceased patient. I've had so many patients cry on my shoulder about their cancer diagnosis, having to smile and say goodbye after their scan feeling like Judas because you know that their life is never going to be the same again and you can't say anything. Seeing the resigned helplessness in the eyes of babies that should never look like that. Its the reason I moved into the area I did. I hope you are managing your PTSD ok, you seem to be a really caring person - probably the reason thatwhat you have seen/experienced has affected you.. Best of luck in the future Gas Tech.

Cheers Chelle

A_Tech · ‎06-05-2015

Hi Chelle,

Thank you for your kind words, it means a lot. I often think along those lines, or more so, how can others I worked with not seem to care or be bothered at all .

I'm actually really glad to hear that you have a medical background yourself, I truely believe that it helps with understanding some of what is happening to us. I would often escort anaesthetised patients for MRI's or CT's, and your right, its devastating to watch the pictures emerging knowing what the outcome is going to be.

From what you have just described of your awareness, I would have to agree with you. I think that the muscle relaxant was given far too soon, and they do wear off depending on which one, on average anywhere from 5-20 minutes. The whole idea is to keep you asleep with another agent, usually the gas.

I have personally seen so many patients like yourself that don't even take paracetamol, but take a truck load of meds to anaesthetise. How nervous you are has a HUGE impact on the uptake and metabolism of the agents.

Basically, I think that what they did to you the night before your surgery, by not allowing you to be with you mum when you were such a young age, is most likely what triggered everything. Extreme fear can cause catatonic states, especially in children, which in turn would affect the anaesthetic. BUT, who ever gave it to you should have known that and compensated for it.

I hope your doing ok, you sound exceptionally well informed which is great to see. Empowerment is all we have!

Take care xx

A_Tech · ‎20-05-2015

Hi Chelle,

I was thinking about you and wondering how things are going, so I thought I would just send a quick Hi.

I hope that your your still doing ok, you sounded like a very strong person.

I too am definitely improving, thank goodness, have moments, but finally looking forward to planing life after PTSD.

Anyway, I was just thinking of you.

Take care,

Donna 😎