Initially I was quite angry about it, however the more I read and the more I learn, the less angry, frustrated and upset I get.
I was angry because the seizures that I had in February were named 'Dissociative seizures' aka 'Pseudo Seizures' aka 'psychogenic seizures'. Immediately after brain surgery I experience dissociation for an extended period, so I know what that feels like for me. What I feel with the seizures/events/attacks, does not feel like that to me. For 8 years before my tumour was removed I battled with doctors and specialists telling me that my symptoms were psychosomatic. They weren't. They were the result of one half of my brain being steadily pushed around into the other half and shifting my mid line in the process. So, I have some trust issues when is comes to diagnoses that are "psychological" in nature. I do live with depression, anxiety and adjustment disorder with low mood.
Back to FND, in some circles referred to as 'F*ck (k)Nows Disorder'. Very simply, FND is a problem with the functioning of the nervous system and thought to be the brains inability to send and/or receive signals properly. FND covers a very wide range of symptoms and consequently people are misdiagnosed. FND can co-exist with other health problems which are more organic in nature. I have diplopia and memory issues as a result of my brain surgery. My hearing loss is not FND related but all of those things can fall under FND if tests are coming back negative for structural causes.
It is a lot like a person is a computer. Dr's and other professionals are looking for hardware issues as a cause for a poorly functioning computer. FND is a software issue. In my experience, when I am very stressed and exhausted, my software bluescreens and my hardware has a mind of its own. This is why I have non epileptic seizures. Unfortunately because of the scarring in my brain from surgery it can be hard to tell what is the rewiring causing problems and what is software. More recently my left leg has had a mind of its own, which appears this time to be software rather than hardware, although the hardware is markedly different to its counterpart. It can be difficult to sort out what is hardware and what is software. It is a slow and in some cases agonising process.
Support from family and friends makes all the difference. Understanding that sometimes my software glitches and shuts me down is supremely important. I have to manage my stress and my energy. This means saying no to things I may otherwise have been all over. It means that I can not at this stage handle a full course load. I am still afraid of being sent off in ambulances to emergency departments for fear of 'wasting their time'. Sometimes this means I avoid receiving medical care I need.
If you would like to find out more about FND there are some fantastic websites around.
https://www.neurosymptoms.org/
https://fndhope.org/
No comments:
Post a Comment