I’ve touched upon some of my mental health struggles before here on my blog. Like when I chatted about my anxiety in my blogging break post. However, one thing I’ve never fully talked about is the fact that I suffer from Psychogenic Non-Epileptic Seizures or PNES. Now when many people hear the word seizures their first thought is usually Epilepsy. A few years ago when I had my first seizures Epilepsy was my first concern. So off I toddled to the doctors to chat to my GP. Before I knew it I was being sent for MRI scans and EEGs, this is a test related to the electrical activity of the brain. It basically records brain wave patterns. I was also referred to a neurologist.
Firstly the doctor wanted to rule out any tumours or strange behaviour going on in my brain. Then I was tested for Epilepsy, hence the EEGs. Getting a diagnosis took quite a little while as waiting for appointments can take months and the fact that there was a six-month waiting list for my local hospital added to the waiting. Luckily there was an appointment that popped up but this meant that I had to travel around 70 miles. Thankfully I had transport due to my parents but if I hadn’t my diagnosis would have been a lot longer so I’m super grateful for my parents.
What actually are Psychogenic Non-Epileptic Seizures?
So you’re probably sat thinking, what the hell are Psychogenic Non-Epileptic Seizures and what causes them? Well according to the Non-Epileptic Attack Disorder website, around 15,000 people in the UK suffer from Psychogenic Non-Epileptic Seizures. However, this statistic is actually thought to be higher as it’s thought that some people may have been misdiagnosed with Epilepsy. Basically, PNES are attacks that look like Epileptic seizures but aren’t caused by abnormal electrical signals in the brain.
Instead, PNES are caused by psychological distress manifestation. For me personally, when I have a seizure I am totally unaware of what is going on. Once over I tend to come round and I feel very confused and incredibly tired and sore. This is because during a seizure I convulse and my muscles tense up. Another issue I have to deal with is injuring myself. In some cases, I’ve just suddenly dropped to the floor which has left me with big bruises. Luckily I’ve not seriously injured myself during a seizure but this is something that does really quite scare me.
So what actually causes PNES?
In terms of what actually causes PNES, it depends from person to person. For some, it’s because they’ve abused sexually or physically. For others, it could be triggered by the death of a loved one and for some people, it can be from an accumulation of stress over time. Now for me, for as long as I can remember I’ve suffered from anxiety. I’ve always been a bag of nerves and found it difficult to deal with certain things. Because anxiety can grind you down, I then started suffering from depression because honestly? I felt worthless due to the anxiety.
At the time when my seizures began I had a lot going on in my life. I had lots going on, on top of dealing with my anxiety and depression. From talking to my counsellor we were basically able to come to the conclusion that my PNES occur because I’m very poor at coping with a lot of stress. When my PNES started there were some big things going on in my life that I found very hard to cope with.
I’m not going to go into too much detail as others were involved and I don’t feel it would be right to plaster it all over the internet. However, I will say that I basically had some big responsibilities and decisions to make as a young adolescent in regards to someone else’s wellbeing. That ultimately is what I think triggered my seizures to start, on top of other stress and my usual anxiety and depression struggles.
Getting diagnosed with Psychogenic Non-Epileptic Seizures (PNES)
So how did I actually get a PNES diagnosis? Well after undergoing various MRI scans and EEG tests as well as having appointments with a neurologist, I was sent home to await an outcome as to what was going on. Shortly after I received a diagnosis, not in person but via a letter. In the letter, it stated that I was being discharged from the neurologist and that I have something called Psychogenic Non-Epileptic Seizures. This was something I and no one around me had ever heard of.
The letter I received gave a brief summary. It basically said that my seizures weren’t caused by abnormal electrical signals like in the case with Epilepsy. Instead, my seizures were caused by a manifestation of psychological distress. The letter pretty much summed up my brain as being like a computer. Basically, when my brain gets overwhelmed with stress and anxiety it’s like a PC with multiple windows open. It can’t handle everything and it does a restart. Hence, seizures. Aside from that, the letter didn’t really give me any other info or advice. I was just told to have to chat with my GP. During this point, I actually felt pretty unsupported & it was hard to get my head around.
Getting the support I needed
So back to my GP I went for advice. PNES isn’t a particularly well-known condition and it was something my doctor herself had to do a little research into. After seeing my GP I discovered that PNES is not something that can be simply fixed with a certain medication. PNES is pretty much a type of mental health condition. It’s not easy to treat. Medication like antidepressants can sometimes help. However, getting to the root cause and changing the way you deal with stress and the way you process thoughts isn’t an easy task.
Dealing with PNES and having counselling sessions
After diagnosis, I sought counselling as part of my treatment. Was it something I really wanted to do? Hell no. The thought of opening up to a total stranger made me feel even more anxious. However, within the first 10 minutes, I found myself spilling my life story to this lovely woman who didn’t judge me and was there to help. During my sessions, I found I learnt a lot about myself. The lady gave me things to think about in terms of how I manage and cope with things in my life. She pinpointed many of my issues to things that I hadn’t even realised were causes of my problems and she helped me to understand that things could improve.
I had quite a few sessions with my counsellor and I’ve gotta say after seeking help I did see a decrease in my seizures. Have they completely stopped? No. For a while, I didn’t have a single seizure. I got rid of a lot of stress in my life and thought I was pretty much on the right track. However, when stresses reappear it can be a testing time for me. Do I have as many seizures as I used to? Definitely not. I feel they have died down due to having a few different coping mechanisms that I have learnt from my counsellor but old habits die hard. Many of my issues around coping poorly with things are deep-rooted and I don’t think I’ll ever be rid of them entirely. But you’ve gotta make the best out of a bad situation I guess.
Living with seizures
So what’s it like living with PNES? Honestly not that much different to before when I didn’t have seizures. At first, it was scary and I used to sit and worry which probably made things even worse. But I’ve come to the conclusion that I can only do my best to manage things. If a seizure occurs, it occurs. Fretting about it isn’t going to make a difference. Yes, it’s not nice dealing with bruising and aches after but I feel like I can somewhat cope better now. I guess it’s to do with adapting.
One thing I will say is that I do feel bad for people who’ve had to witness me having a seizure. I can imagine it’s not very nice. I am very grateful for everyone who has looked after me during a seizure. Without the kindness of people in my life, I could have probably ended up with more than a few bruises. So a big shoutout to anyone who’s ever helped me. You’re all amazing.
What to do if someone you know has Psychogenic Non-Epileptic Seizures
When it comes to having PNES it can be very hard for those around me to deal with, especially if they’ve never witnessed a seizure before or heard of the condition. If you’re in my life or the life of someone who has PNES and you feel a bit unsure about the condition and you want to know, please just ask any questions and read up about the condition. It’s not as complex as it might seem and could help you get a better understanding of what is going on.
Now when it comes to actually dealing with someone having a seizure it’s all about common sense. You want to make sure the person is safe, comfortable and there is nothing inside the person’s mouth as this can cause them to choke. Ideally, you’d want to get them into the recovery position but this isn’t always an option. Aside from that lots of reassurance and a glass of water on hand are always good options. Oh and unless the person is undiagnosed with a condition or they’ve suffered an injury please don’t call an ambulance. This is a waste of resources for our already overstretched NHS.
My hope for the future
One thing that I still don’t like surrounding PNES is that there isn’t much awareness of the condition. My thought is that because there isn’t something “physically” occurring in the brain, i.e abnormal electrical activity it’s not given much awareness. It’s almost as if people say “Oh well because it’s just to do with mental health and the way individuals think it’s not as important as something physical happening.” But that’s the whole problem with society and mental health awareness. Yes, things are changing but there is still that stigma.
I mean when I was diagnosed I wasn’t even given much information. I was given a brief description, a name of what I had and told to talk to my GP who wasn’t clued up on the condition. It’s not the most common condition in the country, I get that. However, there really is a lack of understanding and conversation when it comes to seeking advice. Even from the medical community. It’s like there’s some unwritten rule attached to the condition like we aren’t supposed to talk about it or something. I used to feel super weird talking to people about PNES as I was met with confusion. “You have seizures because you’re poor at dealing with stress? Never heard of it, that’s weird.” But it’s all pretty much down to people just not being informed or aware of PNES.
There shouldn’t be stigma around any mental health conditions
I’ve come to realise I shouldn’t be ashamed of what I have. Not just that but I feel like those around me should be aware of my condition in case anything does occur. If someone wants to ask me a question about my seizures it should be as normal as if I had a physical condition. They shouldn’t feel weird about asking questions. Equally, I don’t want anyone to feel sorry for me or be all like “Oh isn’t that a shame!” Yeah, it’s not the greatest thing in the world but it’s just life to me.
For me, each day is a learning curve when it comes to my mind. At the moment I find self-care to be a very big help when dealing with overwhelming issues. When it comes to taking a step back I find gaming, watching something, spending time with loved ones or reading a book greatly helps. Will I ever be rid of my seizures? I’m not sure about that. Recently they’ve died down a lot and are becoming rarer which is great. One thing I am sure about is that I’m not going to let them take over my life.
Have you heard of PNES?