FND Awareness Month 2024
Hello everyone,
April is FND Awareness month. FND stands for functional neurological disorder. While the cause of it is unkown, research indicates that there might be a link between traumatic experiences and FND. (source) That's why I'm posting this thread in the trauma support community.
How do we spread awareness for FND?
Light the world up in blue and orange, wear blue and orange and spread awareness for FND! To learn more about the FND awareness month, go to the FND Hope Website.
What is a functional neurological disorder?
- FND is caused by an issue with the nervous system and with the communication between the brain and the body, however, the exact cause isn't known yet.
- Triggers for the onset of the symptoms can range from a stressful time in someone's life over an infection all the way to a traumatic head injury.
- FND is considered a rare disease, however, the prevalence isn't clear as FND is still very poorly understood.
- FND symptoms can be fast-onset and vary in severity, however, FND patients are not in control of their symptoms.
- The symptoms themselves can be physical, sensory or cognitive, like for example seizures, paralysis, blindness, and problems with memory and concentration.
- The current treatment options for FND include physical and psychotherapy.
- (Read more about it here)
Questions for you
1) Do you have FND or know someone with FND?
2) If yes, what has your experience with FND been?
3) What would you like to know about FND?
As I struggle with FND myself, I've helped to create posts about it before, especially about non-epileptic seizures. You can read them here and here if you want to.
Take care,
audienta
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Trigger warning: Description of a seizure
@audienta
Yes, I think I do have or had and may have known someone with FND.
In highschool someone who was always quite polite, quiet and pretty had a seizure.
We were in sewing class. I didn't understand what I was seeing. It seemed to go on forever yet it only lasted about 23 seconds.
In the movies and it's always very dramatic. This was just school, with someone I'd known and seen five days a week, every day for years.
They had sort of half toppled onto the table and were shaking, then suddenly with larger spasm and sharp intake of breath, they ended up on the ground.
I remember looking over and seeing them laying there after, curled up, looking so small and vulnerable.
It makes me tear up. I want people to know more about it, how to prevent it or what it is. There could be so much less confusion and upset around it.
Also, during the pandemic while isolated and growing through major multiple grief and loss due to big life changes and transitions, I had some small seizures that lasted about five seconds and no one to turn to.
I don't want anyone to ever have to go through a seizure alone or in public and not know what's happening or at least for people in the medical community to handle it much more kindly and helpfully.
@communicativePond1728 God bless her ❤❤ hugs you tightly ❤
@communicativePond1728
I'm sorry to hear that. Seeing and having a seizure can both be very challenging and uncomfortable. I hope that you could recover well from the seizures you experienced.
In the UK it is called Non Epilectic Attack Disorder (NEAD), or sometimes dissociative seizures.
I was diagnosised with it 2 yrs ago after 2 yrs of collapsing. I am still on a waitlist for treatment but I treated mine on my own and I am episode free. I personally feel my 'attacks' were dorsal vagal shut downs aka a flop response and I learnt to control them. Hope that gives others hope 😊
@LifeIsMyCanvas
Yeah, there are a lot of different names for it.
I'm glad to hear that you were able to recover. Would you like to share what has helped you?
@audienta
I made myself a planner to track my energy levels and nervous system states. I tried to become aware of when I was in amber or red zones too much. I also wrote down what was happening before I had an attack, which for me was sensory overload & medical appointments. Now I don't go to appointments alone and give myself sensory down time after going out/social situations. I just analysed my patterns and looked for ways to break the cycle I guess. This chart helped: https://traumainformedoregon.org/wp-content/uploads/2019/05/Autonomic-Nervous-System-Babette-Rothschild.jpg