Help making sense of my FND please

[yoshiyoshi]

Hi all,

In mid-November 2019, I suddenly blacked out at home one Sunday evening and remained unconscious until the Tuesday afternoon. I wasn't aware that I had lost consciousness though until the following weekend as I was plagued with what can only be described as a really heavy and fuzzy grogginess and a ferry-in-a-storm level of dizziness that took days to clear enough to process what had happened. Ever since, I have experienced an uncountable number of sudden blackouts of varying lengths, and I continue to struggle with dizziness, difficulty finding words, memory loss, intense delirium, inability to process things, 'mind fog', chronic fatigue, insomnia and a number of other symptoms that I currently can't remember. I was admitted into hospital in December 2019 and had a blackout whilst in the middle of talking with a doctor by my bedside. After they eventually brought me back to consciousness, a neurologist came to see me to say that he reckoned I had had a Non-Epileptic Attack Disorder (NEAD) episode and that was when I first found out a little bit about FND. I was subsequently referred to a Neuro Psychologist as an outpatient who I finally started being seen (remotely) by in January 2021 (delay due to the pandemic) for FND talking therapy and I have now had 7 sessions. During this time though, a chain of serious and rather intense life events kept happening, so each session has ended up being more of a crisis prevention rather than working through/with my FND directly. Most recently, the culmination of the chain of recent events combined with me having had to seriously and continuously overdo things due to my university telling me that regardless of my diagnosis I have to finish my degree this year or lose the whole degree, has meant that my FND symptoms have been incredibly bad lately. The problem is, I didn't know that pushing myself with my academia or the effect of present time life experiences on me would have any effect on my FND symptoms. I've read into what FND and NEAD are like as much as I've been able to since I was first told about it back in December 2019, but I'm still really struggling to understand it all and process my own FND. Ironically, I'm only recently coming to realise that it seems it's my FND symptoms that's preventing me from processing my own FND. What makes it even more frustrating though, is that I'm not new to having health conditions that I hadn't heard of before. In addition to my asthma and IBS, I also have endometriosis (for the last 9 years) and I struggled with post-concussive syndrome after a head and spine injury (nothing too serious, just a small crack and excess fluid) from November 2018 until the Spring of 2019, so I'm used to processing and understanding health conditions that are new to me and are complex in nature and then being able to work out the right balance for me to be able to move forwards with those conditions. However, I don't seem to be able to do any of that with my FND, despite my continued efforts...

Can I ask what advice people may have and what things have helped others process and understand their FND please?

Thank you in advance and my apologies for the length!

[Van604]

I agree. Did the neurologist know about your head injury? Have you had an MRI recently?

[Brokendeer]

Ok, so I am long term sufferer of Motor FND (you will find out that there are many, many different types of symptoms attributed to the same diagnosis of FND as you read posts and/or talk with FND Neurologists). Anyway, I have experience of undergoing FND Inpatient Therapies provided by the NHS and indeed of getting to know a few FND NEAD patients.

FND is where the body's nervous system `short circuits' is the simplest way to think of it, the brain relies on sending instructions and receiving instructions from all over the body and is supposed to prioritise and process that information to keep you in balance with all your body needs - however FND means that confusion over information to/from body systems causes, yep, Functional insufficiencies. Sometimes physical, sometimes mental - mostly a mixture of both as Humans have very complex brains.

You have (like most of us) had a physical trauma in the past which your brain has not recovered fully from and is doing it's best to compensate for what it thinks is ongoing damage - healed or not, it complicates and overloads the nervous system communication networks.

The best advice I can give is to break down your tasks into Physical, Mental & Emotional short sessions. By splitting your time between those activities needing either full Physical action, or full Mental concentration or controlling your emotional responses to situations (through breathing techniques or talking yourself out of stressing - life really is too short to worry over things you cannot control!)

This method of not Boom - Busting over stretching yourself with tasks helps you level out your body responses to a slower and manageable level. Avoiding going into full Adrenaline Survival `Fight, Freeze or Fight' modes is a huge help. Believe me, you may not be aware of it all the time, but your FND problem is being mostly triggered by this unconscious Survival instinct overriding the sensible conscious responses to situations.

Now the blackouts are extremely difficult to control, but the people I knew with FND NEAD did manage to reduce the severity, duration and frequency by using Cognitive Behaviour Therapy Techniques like breathing, meditation, logically taking down their emotions in stressy situations. Their diet was also checked out and balancing that also helped i.e not overdoing caffeine or bananas thus levelling out adrenaline!

What is that saying... "Life is not a sprint, it is a Marathon" - you will reach your goals but you must go at your own comfortable pace, not the pace set by others without FND.

Look for the calm in the storm, good luck with Uni!

[Mic67 in reply to Brokendeer]

Good explanation!

[Brokendeer]

P.S if you had Dyslexia, there would not be this argument about your studies being finished within the Universities standard deadlines, would there?

They would help anyone with Dyslexia by providing them extra tech support and allowing longer assignment times!

Mention this is no different to FND which is a recognised Neurological Medical Condition affecting your learning speed and therefore you are in need of the same additional educational support adjustments.