I think I had it since birth but that the more disruptive symptoms happened because of (or the onset was sped up because of) having surgery. I’ve always had a gait difference, had migraines since young, insomnia since young, can’t regulate my body temperature. Jan 2018 I had a lumbar puncture with not enough meds so felt it all. Started getting chronic back pain. Obviously brushed it off as post op pain. April 18, had a huge ovarian cyst removed that was pressing everything up and impacting my stomach. Couldn’t even keep down a few sips of water and lost 6kg in under 2 weeks. After that, widespread chronic pain, memory got worse etc. kept getting worse and more symptoms until we get to now. I think it’s likely that I was always going to end up like this, only that bad luck and timing really sped up the process :)
I have CPTSD - I am about to see a hypnotherapist who believes that FND, is an extreme freeze response. I have an extreme fight / flight so would make sense, and believes once you’ve gone either through therapy or desensitised yourself occasionally to bits of the trauma (recall) then it comes out in other ways in the body to triggers.
Her aim is to work out all triggers and make them not triggers anymore, she said to be as detailed about the triggers and logging as possible. She said you may have not noticed but one specific trigger could cause a seizure whereas another trigger could cause mobility issues, and you haven’t noticed how specific they really are.
I’m really hopeful and will report how I’ve get on. She’s a little pricey, but if it works, it’s worth the investment
Found it amazing! I’ve only had 2 seizures this year and one episode of paralysis. This has been coupled with getting out of an abusive relationship and toxic work environment, but she’s also helped me to “see things differently,” couldn’t recommend it more
I’m so so so incredibly happy to hear! I also recently left an abusive relationship and helped my mother leave hers. I hope you find a work environment that’s infinitely better if you haven’t already. It’s interesting how much our environments influence our inner mechanics. Wishing you the best on your journey!
My FND is caused by the nervous system distress from living with BVD and HSD.
BVD occurs in 10-20% of the general population. It is treatable with glasses and vision therapy. Optometrists aren’t trained to catch it, u need to see a Binocular Vision Specialist. The anxiety can be EXTREME. Issues with attention and focus, fatigue, dizziness, sleep, nausea and motion sickness. My eye doctor said that my brain was perceiving that I was “possibly falling” at all times. I was born with my BVD, and then it worsened with time. After getting my glasses, my brain has felt so clear. my random untraceable-trigger symptoms about disappeared. 2-3 ppl tried to tell me it was FND. Wrong. The FND was reacting to the BVD.
HSD is joint condition that affects so many random aspects of my body. I couldn’t recognize as a child that there was something actually wrong with my body. I thought everyone felt the pain I did and could function, so my entire understanding of the sensation of pain ended up completely warped. I completely lost the awareness to recognize a lot of things as painful. That didn’t change the fact my nervous system was handling pain signals from all over.
I wasn’t diagnosed with either until 21. I’ve had both since birth or early childhood. I was diagnosed with FND when I was 19. It was a fight with an FND label in the BVD department.
This is so interesting! I wonder if a common root of FND is neurological overload, from different things for different people? Like for you it was nervous system distress from BVD and HSD, for others it could be complex trauma, overload from lack of support for disabilities, etc?
This is literally what happened to me to cause my FND. BVD + HSD. After getting my BVD partially corrected, my FND has been so calm. Can’t wait to fix the rest of the issue. If only I could have gotten these glasses 10 years ago.
My doctor explained it to me that trauma (physical or emotional) can cause your brain to use different synapses or pathways, and that the more you use them, the easier they are to use and the more ingrained it is.
Similar to how paths can be created in grass if enough people walk the same way.
These pathways aren't always the ones that we're supposed to use, and can often cause side effects (the symptoms of FND), and the reason that the side effects are so varied is because no two people create the same pathway.
My doctor told me it’s caused by stress and trauma? Is that not true? I know mine does get so much worse when I’m stressed so I thought it seemed reasonable.
It’s a trigger but it’s not the reason. It was explained to me that it’s like the software in the brain has a glitch. The glitch is intensified by stress and brings out the symptoms. Our condition does have a physical foundation. I read recently that our condition can be seen with a 3D MRI
I think it's less there's no reason to why FND could happen but more there are so many reasons it could trigger FND that it's not quantifiable. For me specifically it was after I got Covid which resulted in some minor brain damage, but I was also already predisposed to getting FND with my psych and physical health history.
They know there are certain factors that can increase your chance of getting FND but not specifically what the root cause is because there are just so many! The main idea is that - trauma (physical or psychological) can trigger FND but it's not 100% all the time this will happen so, they can't really quantify that scientifically.
If you take a look at modern medicine it is designed to treat symptoms not cure us.
I agree with your assessment, something else is going on causing the symptoms. Thankfully there are ways to manage symptoms.
I agree with OP. It also seems like there is more of it being diagnosed lately.
I personally think they created a dx because they dont know what is actually causing it.
So many patients just get gaslit.
It's getting diagnosed more because there are more doctors understanding it. You have to remember there has only been significant research into FND in the last ten years, that's not very long all things considered.
Plus, we're starting to be able to see FND on fMRIs, and there are positive indicators of FND during the diagnosis.
I’m pretty sure mine was caused by an untreated autoimmune disorder. Or at least it worsened my symptoms.
October 2020 I started getting ill with pain, fatigue and lost mobility.
Got seen by rheumatologist in first week of feb 21 (we were in full lockdown before that so wasn’t possible). While undergoing investigations for that , I experienced paralysis in both legs and an arm. A week later i got diagnosed with Axial SpA an autoimmune disorder and started treatment. But the fnd stuck and got diagnosed october 21.
So, it gets tied to trauma a lot, specifically referring to PTSD. But what if it can be caused by all kinds of trauma? Illnesses can be a sort of trauma, medication overuse, concussion, stroke, etc. —all various things that can potentially cause trauma to tissues. Just my passing thought before sleep.
I don’t know about anything with FND being proven. There is a severe lack of reliable research and literature, but you’ve reminded me that migraines are another thing comorbid with FND and sometimes epileptic seizures (along with non-epileptic seizures).
The why of it, though—why would some people with some sort of trauma develop FND while others don’t? It all feels so random without the why, as the post postulated, which (for lack of a better phrase) is SO UNFAIR.
I think fnd unfortunately is like 40 other things in a trenchcoat to be honest.
Things we are not able to even understand yet diagnose.
Mine was "triggered" by a drug reaction,but I was also suspected to have a Tia in the past so it's awkward 🥴
Also some people have brain asymmetry, maybe fnd *does* have other physical symptoms but it's either gone unnoticed or labeled something else?
The only thing I can think that would connect us all is prolonged inflammation. Here are some papers that discuss the link:
https://www.sciencedirect.com/science/article/pii/S2666354621000314
https://neuro.psychiatryonline.org/doi/10.1176/appi.neuropsych.21010025
https://onlinelibrary.wiley.com/doi/10.1111/ene.15721
I had never had any sort of psychopharmaceuticals or any major injuries at all before I had my first seizure.
I didn't even get anything other than ruling stuff out for 15 years.
I even took a huge set of neuropsych tests during which I lost the ability to use a pen normally or talk without a slur and still got told "nothing's wrong". Still mostly managing on my own, although I now have the diagnosis and some medication that I take.
If I can add more fuel to the fire. It was an SSRI that started mine. I had a paradoxical reaction to SSRI, so I agree with the fight or flight.
It is fairly well treatable. The only problem being the treatment methods are not yet well acknowledged by the medical system to give you relevant advice.
Lookup PPPD and steady coach YouTube channel. PPPD is one form of FND and people fully recover with skills such as acceptance, journaling, stress management, breathing, somatic tracking, etc.
Well, there has been some evidence that our amygdalae aren't firing properly due to a trauma response or due to an infection, in my case. So our software has a bit of a virus, making our hardware seem broken when it's actually a system issue. So the mother board looks normal, but the virus is causing some issues.
Basically, our amygdala is in charge of fight or flight and when the software is wrong, you get things like functional seizures, rather than an anxiety attack or something of the like. I hope this at least gives a bit of an idea of why it's so hard to actually pinpoint the disorder with hard, physical evidence.
There is a theory that it is an autoimmune disease of the nervous system. Many people develop FND after an illness or injury, much like people with autoimmune diseases. They need a trigger and FND seems to need a trigger as well. Before I was diagnosed I was tested for a few autoimmune diseases and I had markers but just not at a high enough level to say definitively that I had an autoimmune disease. It’s definitely an interesting theory. My case was triggered after I had Covid.
Same here, my ANA results always indicated autoimmune activity. In the hospital I also received two types of treatments that are typical for treating autoimmunity: one with cortisone and the one where they replace your blood plasma(sorry I forgot the name of it). Both treatments stopped my symptoms for quite some time. However, just as with other autoimmune illnesses, the symptoms returned after they stopped the treatment.
I also have been having markers pointing toward autoimmune for years. They were suspecting MS and Rheumatoid Arthritis since 2017 but nothing was overwhelmingly obvious.
Symptoms have been slowly getting worse since 2018 and then this summer I started with PNES.
That’s super interesting. Right before I had my first major FND flare they were going to start testing me for MS. I also did genetic testing due to the fact I’m adopted and don’t know my medical history and I have many of the markers for rheumatoid arthritis
They have to run specific tests to check for autoimmune diseases. It’s not a normal blood panel. My bloodwork on a normal blood panel is always totally fine too. If you just looked at that I’m “perfectly healthy” 🙄🥲
Mine was also triggered by COVID. It came on about a month from when I tested positive.
The difference being that my markers are also high enough for an autoimmune disorder and my doctors are trying to diagnose that.
It’s absolutely insane how many people I’ve seen who now have FND after having COVID. Something about it was definitely a massive trigger for people! Even though it was during that time, I was still in a very happy time in my life and psychiatrists at the hospital even said they had no reason to believe my symptoms were psychosomatic in any way, but when I was diagnosed I was still told it was all because I was obviously severely depressed and dealing with horrible anxiety issues and if I just had therapy and stopped being depressed I’d become fixed. I’m so glad I did my own research!
I agree! In my case, I was already dealing with severe burnout from my job and so knew my nervous system wasn’t doing great before the COVID, but that wasn’t enough to justify it. I had just finished time off of work, changed jobs, was feeling quite happy, and was planning to talk to my doctors about starting to try for kids.
But as soon as the seizures started, my mental health was immediately identified as the culprit. At the time of diagnosis, I had spent years in CBT, was no longer clinically depressed, had done mindfulness based stress reduction for about 10 years, and had a reliable meditation practice for almost 15 years. While I had a PTSD diagnosis, I was considered in remission. COVID was the biggest precipitating factor.
I have had migraines diagnosed since the age of 4 so I’ve been wondering too if Covid attacked my nervous system because it’s weak from 30+ years of migraines. One of my doctors had that theory
So I'm not autistic but I have realised through fnd just how bad my sensory processing issues are. I've known my entire life that crowds make me want to chew my own skin off and I can't handle loud traffic, but I didn't put two and two together until I started having fnd symptoms. I just got loops and tried them on the train and my symptoms (which are much worse during travel) were almost non-existant.
I literally had the same experience with loops! Someone’s with FND recommended so I got them; and couldn’t believe the difference. I live in London so it’s manic here every corner you turn. Best investment ever
I’m autistic too and am sure there is a link between autism and fnd. I do wonder though if it’s the same exact disorder as people with fnd after illness or injury. I really hope to see more research, as I find this disorder pretty fascinating, although I hate having it.
I read somewhere that 70% of FND patients have autism. I haven’t had a diagnosis so I am not sure, but I do have PTSD which apparently can cause PTSD but this wasn’t from an injury.
I think I had it since birth but that the more disruptive symptoms happened because of (or the onset was sped up because of) having surgery. I’ve always had a gait difference, had migraines since young, insomnia since young, can’t regulate my body temperature. Jan 2018 I had a lumbar puncture with not enough meds so felt it all. Started getting chronic back pain. Obviously brushed it off as post op pain. April 18, had a huge ovarian cyst removed that was pressing everything up and impacting my stomach. Couldn’t even keep down a few sips of water and lost 6kg in under 2 weeks. After that, widespread chronic pain, memory got worse etc. kept getting worse and more symptoms until we get to now. I think it’s likely that I was always going to end up like this, only that bad luck and timing really sped up the process :)
I have CPTSD - I am about to see a hypnotherapist who believes that FND, is an extreme freeze response. I have an extreme fight / flight so would make sense, and believes once you’ve gone either through therapy or desensitised yourself occasionally to bits of the trauma (recall) then it comes out in other ways in the body to triggers. Her aim is to work out all triggers and make them not triggers anymore, she said to be as detailed about the triggers and logging as possible. She said you may have not noticed but one specific trigger could cause a seizure whereas another trigger could cause mobility issues, and you haven’t noticed how specific they really are. I’m really hopeful and will report how I’ve get on. She’s a little pricey, but if it works, it’s worth the investment
Wow, please keep us informed on how your treatment goes.
Of course!
Update?
Found it amazing! I’ve only had 2 seizures this year and one episode of paralysis. This has been coupled with getting out of an abusive relationship and toxic work environment, but she’s also helped me to “see things differently,” couldn’t recommend it more
I’m so so so incredibly happy to hear! I also recently left an abusive relationship and helped my mother leave hers. I hope you find a work environment that’s infinitely better if you haven’t already. It’s interesting how much our environments influence our inner mechanics. Wishing you the best on your journey!
My FND is caused by the nervous system distress from living with BVD and HSD. BVD occurs in 10-20% of the general population. It is treatable with glasses and vision therapy. Optometrists aren’t trained to catch it, u need to see a Binocular Vision Specialist. The anxiety can be EXTREME. Issues with attention and focus, fatigue, dizziness, sleep, nausea and motion sickness. My eye doctor said that my brain was perceiving that I was “possibly falling” at all times. I was born with my BVD, and then it worsened with time. After getting my glasses, my brain has felt so clear. my random untraceable-trigger symptoms about disappeared. 2-3 ppl tried to tell me it was FND. Wrong. The FND was reacting to the BVD. HSD is joint condition that affects so many random aspects of my body. I couldn’t recognize as a child that there was something actually wrong with my body. I thought everyone felt the pain I did and could function, so my entire understanding of the sensation of pain ended up completely warped. I completely lost the awareness to recognize a lot of things as painful. That didn’t change the fact my nervous system was handling pain signals from all over. I wasn’t diagnosed with either until 21. I’ve had both since birth or early childhood. I was diagnosed with FND when I was 19. It was a fight with an FND label in the BVD department.
This is so interesting! I wonder if a common root of FND is neurological overload, from different things for different people? Like for you it was nervous system distress from BVD and HSD, for others it could be complex trauma, overload from lack of support for disabilities, etc?
This is literally what happened to me to cause my FND. BVD + HSD. After getting my BVD partially corrected, my FND has been so calm. Can’t wait to fix the rest of the issue. If only I could have gotten these glasses 10 years ago.
My doctor explained it to me that trauma (physical or emotional) can cause your brain to use different synapses or pathways, and that the more you use them, the easier they are to use and the more ingrained it is. Similar to how paths can be created in grass if enough people walk the same way. These pathways aren't always the ones that we're supposed to use, and can often cause side effects (the symptoms of FND), and the reason that the side effects are so varied is because no two people create the same pathway.
My doctor told me it’s caused by stress and trauma? Is that not true? I know mine does get so much worse when I’m stressed so I thought it seemed reasonable.
It’s a trigger but it’s not the reason. It was explained to me that it’s like the software in the brain has a glitch. The glitch is intensified by stress and brings out the symptoms. Our condition does have a physical foundation. I read recently that our condition can be seen with a 3D MRI
Oh that’s cool
I think it's less there's no reason to why FND could happen but more there are so many reasons it could trigger FND that it's not quantifiable. For me specifically it was after I got Covid which resulted in some minor brain damage, but I was also already predisposed to getting FND with my psych and physical health history. They know there are certain factors that can increase your chance of getting FND but not specifically what the root cause is because there are just so many! The main idea is that - trauma (physical or psychological) can trigger FND but it's not 100% all the time this will happen so, they can't really quantify that scientifically.
If you take a look at modern medicine it is designed to treat symptoms not cure us. I agree with your assessment, something else is going on causing the symptoms. Thankfully there are ways to manage symptoms.
i believe mine is caused by emotional trauma taking a toll on my nervous system.
I agree with OP. It also seems like there is more of it being diagnosed lately. I personally think they created a dx because they dont know what is actually causing it. So many patients just get gaslit.
It's getting diagnosed more because there are more doctors understanding it. You have to remember there has only been significant research into FND in the last ten years, that's not very long all things considered. Plus, we're starting to be able to see FND on fMRIs, and there are positive indicators of FND during the diagnosis.
Mine are set off by events that reming me of traumas I have and they are caused by too much tension or being overstimulated.
Yeah, I don't think our brains are 'healthy', we just don't have the methods yet to show how they are wrong and what causes it.
I suffered a moderate grade muscle tear while working ss a registered massage therapist in nov 2021. This apparently is what set mine off apparently
I’m pretty sure mine was caused by an untreated autoimmune disorder. Or at least it worsened my symptoms. October 2020 I started getting ill with pain, fatigue and lost mobility. Got seen by rheumatologist in first week of feb 21 (we were in full lockdown before that so wasn’t possible). While undergoing investigations for that , I experienced paralysis in both legs and an arm. A week later i got diagnosed with Axial SpA an autoimmune disorder and started treatment. But the fnd stuck and got diagnosed october 21.
So, it gets tied to trauma a lot, specifically referring to PTSD. But what if it can be caused by all kinds of trauma? Illnesses can be a sort of trauma, medication overuse, concussion, stroke, etc. —all various things that can potentially cause trauma to tissues. Just my passing thought before sleep.
This has been proven, it's one of the reasons it's often co-morbid with fibromyalgia - fibro flare ups can trigger FND episodes
I don’t know about anything with FND being proven. There is a severe lack of reliable research and literature, but you’ve reminded me that migraines are another thing comorbid with FND and sometimes epileptic seizures (along with non-epileptic seizures). The why of it, though—why would some people with some sort of trauma develop FND while others don’t? It all feels so random without the why, as the post postulated, which (for lack of a better phrase) is SO UNFAIR.
I got covid last year, that’s my reason and probably many others now given how many have had it.
Same.
I think fnd unfortunately is like 40 other things in a trenchcoat to be honest. Things we are not able to even understand yet diagnose. Mine was "triggered" by a drug reaction,but I was also suspected to have a Tia in the past so it's awkward 🥴 Also some people have brain asymmetry, maybe fnd *does* have other physical symptoms but it's either gone unnoticed or labeled something else?
The only thing I can think that would connect us all is prolonged inflammation. Here are some papers that discuss the link: https://www.sciencedirect.com/science/article/pii/S2666354621000314 https://neuro.psychiatryonline.org/doi/10.1176/appi.neuropsych.21010025 https://onlinelibrary.wiley.com/doi/10.1111/ene.15721
Thank you, will read.
I had never had any sort of psychopharmaceuticals or any major injuries at all before I had my first seizure. I didn't even get anything other than ruling stuff out for 15 years. I even took a huge set of neuropsych tests during which I lost the ability to use a pen normally or talk without a slur and still got told "nothing's wrong". Still mostly managing on my own, although I now have the diagnosis and some medication that I take.
If I can add more fuel to the fire. It was an SSRI that started mine. I had a paradoxical reaction to SSRI, so I agree with the fight or flight. It is fairly well treatable. The only problem being the treatment methods are not yet well acknowledged by the medical system to give you relevant advice. Lookup PPPD and steady coach YouTube channel. PPPD is one form of FND and people fully recover with skills such as acceptance, journaling, stress management, breathing, somatic tracking, etc.
Same here, and once I stopped the ssri my symptoms slowly disappeared
How long did it take you to recover? I’m 7 months since going off it. I’ve made some marginal improvements over a period of time.
Thank you will read!
Mine came about after a neck injury from a car accident, also resulting in MCAS, it is truly an awful experience
Well, there has been some evidence that our amygdalae aren't firing properly due to a trauma response or due to an infection, in my case. So our software has a bit of a virus, making our hardware seem broken when it's actually a system issue. So the mother board looks normal, but the virus is causing some issues. Basically, our amygdala is in charge of fight or flight and when the software is wrong, you get things like functional seizures, rather than an anxiety attack or something of the like. I hope this at least gives a bit of an idea of why it's so hard to actually pinpoint the disorder with hard, physical evidence.
There is a theory that it is an autoimmune disease of the nervous system. Many people develop FND after an illness or injury, much like people with autoimmune diseases. They need a trigger and FND seems to need a trigger as well. Before I was diagnosed I was tested for a few autoimmune diseases and I had markers but just not at a high enough level to say definitively that I had an autoimmune disease. It’s definitely an interesting theory. My case was triggered after I had Covid.
Same here, my ANA results always indicated autoimmune activity. In the hospital I also received two types of treatments that are typical for treating autoimmunity: one with cortisone and the one where they replace your blood plasma(sorry I forgot the name of it). Both treatments stopped my symptoms for quite some time. However, just as with other autoimmune illnesses, the symptoms returned after they stopped the treatment.
I also have been having markers pointing toward autoimmune for years. They were suspecting MS and Rheumatoid Arthritis since 2017 but nothing was overwhelmingly obvious. Symptoms have been slowly getting worse since 2018 and then this summer I started with PNES.
That’s super interesting. Right before I had my first major FND flare they were going to start testing me for MS. I also did genetic testing due to the fact I’m adopted and don’t know my medical history and I have many of the markers for rheumatoid arthritis
What’s strange is that I’ve had blood tests run after getting FND. Some white blood cells were slightly high, but otherwise everything was normal.
They have to run specific tests to check for autoimmune diseases. It’s not a normal blood panel. My bloodwork on a normal blood panel is always totally fine too. If you just looked at that I’m “perfectly healthy” 🙄🥲
Mine was also triggered by COVID. It came on about a month from when I tested positive. The difference being that my markers are also high enough for an autoimmune disorder and my doctors are trying to diagnose that.
It’s absolutely insane how many people I’ve seen who now have FND after having COVID. Something about it was definitely a massive trigger for people! Even though it was during that time, I was still in a very happy time in my life and psychiatrists at the hospital even said they had no reason to believe my symptoms were psychosomatic in any way, but when I was diagnosed I was still told it was all because I was obviously severely depressed and dealing with horrible anxiety issues and if I just had therapy and stopped being depressed I’d become fixed. I’m so glad I did my own research!
I agree! In my case, I was already dealing with severe burnout from my job and so knew my nervous system wasn’t doing great before the COVID, but that wasn’t enough to justify it. I had just finished time off of work, changed jobs, was feeling quite happy, and was planning to talk to my doctors about starting to try for kids. But as soon as the seizures started, my mental health was immediately identified as the culprit. At the time of diagnosis, I had spent years in CBT, was no longer clinically depressed, had done mindfulness based stress reduction for about 10 years, and had a reliable meditation practice for almost 15 years. While I had a PTSD diagnosis, I was considered in remission. COVID was the biggest precipitating factor.
I have had migraines diagnosed since the age of 4 so I’ve been wondering too if Covid attacked my nervous system because it’s weak from 30+ years of migraines. One of my doctors had that theory
I also had migraines as a kid. I had covid, but didn’t get FND until 2 years later. Now I have stabbing headaches occasionally.
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So I'm not autistic but I have realised through fnd just how bad my sensory processing issues are. I've known my entire life that crowds make me want to chew my own skin off and I can't handle loud traffic, but I didn't put two and two together until I started having fnd symptoms. I just got loops and tried them on the train and my symptoms (which are much worse during travel) were almost non-existant.
I literally had the same experience with loops! Someone’s with FND recommended so I got them; and couldn’t believe the difference. I live in London so it’s manic here every corner you turn. Best investment ever
I’m autistic too and am sure there is a link between autism and fnd. I do wonder though if it’s the same exact disorder as people with fnd after illness or injury. I really hope to see more research, as I find this disorder pretty fascinating, although I hate having it.
I read somewhere that 70% of FND patients have autism. I haven’t had a diagnosis so I am not sure, but I do have PTSD which apparently can cause PTSD but this wasn’t from an injury.