🎥 What Causes Functional Neurological Disorder (FND)?

[Music] hello everyone welcome back to another eye care for your brain with board-certified neuropsychologist Dr Karen Sullivan that is me thank you so much for being here tonight we're going to talk about functional neurological disorder also called fnd This is a diagnosis that I have cared about for as long as I have known about it because it is so often a place where people fall through the cracks between neurology and Psychiatry but most recently I have updated my knowledge on it because of a very special woman named Lorraine who is the guest on my third podcast I care for your brain podcast which comes out on April 13th which also happens to be world fnd day so we are dedicating this podcast and this lecture tonight two people who are living alongside this very poorly understood but hopeful disorder because we are actually starting to understand what really is going on behind the scenes and most importantly how can we get people the support and the treatment that they really need and deserve this diagnosis has been around for about 10 years as fnd but if you trace it back it actually goes back to a very long time ago when we talked about things like hysteria it then became known as a conversion disorder a functional disorder or a somatization disorder thank heavens we have we actually started to see some Progressive humanity and hope brought into this diagnosis a big part of that was in 2019 so only about four years ago we actually saw the development of the functional neurological society and with that we've seen a huge step forward in terms of validating the multiple symptoms that people have using a new diagnostic framework which moved us from a diagnosis of exclusion to inclusion so what that means is it used to just be test after test after test it's not this it's not this it's not this and basically then some feedback which was either subtly or not so subtly quite invalidating and really the message was it's something in your head that's making you do this it's you know a psychiatric issue it's a mental health issue now we actually think of it as an inclusion criteria so what that means is we actually know exactly what it is we're looking for and people really do have to meet multiple different sets of symptoms to get this diagnosis and that's a big part of humanizing it is goes from kind of being in the shadows to being something that neurologists actually have a much better handle on but the best thing that's probably happened in the last few years is that we've actually moved into evidence-based treatment so these are multi-disciplinary approaches to managing mind body and brain part of why I am so attracted to neuropsychology and respect it so much is because we are not participating in this false dualism between mind and brain right we really interpret brain health conditions within the context of the individual the person's own psychology so I think we really offer a very helpful really an elegant approach to understanding brain health challenges including fnd so I want to start off with one very clear message about this diagnosis and that is that this is not faking this is not knowingly putting on fnd is a set of motor and sensory symptoms so think about paralysis seizures Tremor that are genuinely experienced by the person but are not caused by a structural neurological issue okay it's the second most common reason people see neurologists I wonder if you know the first it is headache it is migraine fnd disproportionately affects women three to one ratio that does even out a little bit as we get older but mostly it's something that hits women typically in their 30s through their 50s fnd often causes a very high level of physical and mental health disability actually more in many studies than things like multiple sclerosis or epilepsy 20 to 30 percent of people with fnd also meet criteria for a neurological diagnosis and that gets very tricky so what that means is like you know one in three one in four people who have a diagnosed neurological condition like epilepsy like stroke like traumatic brain injury also are at risk for having functional neurological disorder in a large cohort study of about 1030 people they actually track these folks over 18 months and they found that only four of them had actually been incorrectly diagnosed with fnd so that's an important point because so often people are left with this feeling like no it it feels so real it is so real I I there must be something and that that can be part of the mental health struggle is this feeling like no one else is taking seriously what you're going through so I thought that was important to look at some of the data to see you know how often are we misclassifying these people and it turns out not really very much at all so what causes fnd when I was being trained 10 15 years ago the theory was that it was pretty straightforward and that it was related to repressed trauma that was held in the body that eventually erupted and now we have a much more comprehensive understanding that it's really multifactorial and there's many different reasons across time so across a lifespan that make us much more prone to it make it be triggered at a certain place and time in our lives and then help to sustain it so the way we talk about these are predisposing precipitating and perpetuating factors and one of the keys to understand is that this is happening outside of the person's conscious awareness so a predisposing factor most commonly is Early Childhood adverse experiences so this would be in the Continuum of all the different types of abuse that exist and neglect and very often when we don't have that early Dependable safe parental figure we can develop attachment disorders and that can really make it hard to develop relationship skills with anyone else in the future including ourselves and there can often be kind of a split in how we go through life when we have an attachment disorder where there's not a real ability to feel like we can integrate or Bond or connect to other people peoples whose parents were very medically ill as children seem to be at higher risk probably from being exposed to all the things that go along with a secondary with an illness precipitating factors are the thing that happens right before the fnd symptoms start so this is often trauma psychological trauma but it can also be physical trauma things like migraine infections I'm certain this is part of long covid for some people there's just a feeling of things being out of control feeling like you were victimized even if it was by a virus it's still experienced by the psyche as being hijacked and not being safe perpetuating factors are what keep it going so part of that is the interface with the medical system not being believed having beliefs that if you use the limb that's in question that you're going to be doing further damage so we often see these very protective behaviors where people actually will stop using their entire arm when they have a Tremor in it because the brain is giving the Mind signals that there is danger here this is a trauma and with no sound trusted medical advice what's a very normal behavior is that you're going to try to want to minimize the trauma minimize the damage so we often see people actually become quite deconditioned with fnd just out of fear really out of like a fear response that they just don't know what to do and no one's telling them what it is so they don't want to make it worse so people oftentimes kind of can drop out of very important parts of their life we see people spending a lot more time alone a lot more more time feeling like they can't engage in Hobbies be with friends and family we also see a lot of fatigue that goes on with fnd which is probably due to multiple things but if you just kind of imagine being in a state of having symptoms that are very very real to you but never having them validated or really respected or diagnosed or given a treatment plan it's a very hopeless type of a place to live and so very often we see people just kind of lacking in energy and then very prone to depression or anxiety so fnd requires that we have two sets of symptoms either motor or sensory symptoms and we then further classify them as negative or positive So within motor we've got things like Tremor seizure shaking limb weakness then within sensory it's more of like an unusual feeling or a sensation so we can have things like pins and needles it feels like our limbs aren't our own the limbs just feel kind of strange and not familiar double vision trouble swallowing these types of things the the positive symptoms are when we see abnormal movements so things that are visible and the negative symptoms is when there's a lack right so we see the lack of movement or weakness in addition to the motor and sensory symptoms I as a neuropsychologist often see the other four symptoms quite a bit so the first one are cognitive complaints mostly concentration and attention and memory then fatigue sleep disturbance and pain and in fact when I look at the research what the research tells me is these four symptoms actually cause more disability than the neurological symptoms so this is a very common thing that I see and what we ultimately try to help people understand after we arrive at the accurate diagnosis is that the symptoms of fnd can present as very internally distracting we only have but so much bandwidth to go around and engage with the world and when we are drawn to a part of our body that is having a symptom it divides our attention and it's very hard to pay attention to what's happening now and if you don't pay good enough attention on the front end you never really make a full memory of it so when you go to recall it it feels like you've lost the memory but the truth is you never really made it in the first place so talking about fnd requires that we then have a understanding of the neurobiology of the stress response and so for me I see dissociation and somatization as very important to this conversation so I want to tell you what I mean by those and also let you know not everybody shares my view there are definitely some people out there who feel that fnd has nothing at all to do with trauma or traumatic stress that's not how I think about it and the way I feel like I've been educated about it is by closely listening to my patients and by doing a lot of reading on it so for me at the heart of fnd is a bodily manifestation of trauma and I do see it in that lifespan way so there's some type of remote far away stressful life event abuse or neglect and that sets people up to be eight times more likely to have fnd and then what we see are precipitating factors those those experiences right before it that are kind of the Tipping Point kind of the straw that breaks the camel's back and what can be very confusing is that those breaking points can actually be not as bad as the early things you've lived through so that can really throw people for a loop like really like I didn't even put that together because who would have thought this little issue I had with my cousin would have tripped me off I've lived through way worse but really there was just something about it that was the person's breaking point and so part of how those two things are connected is the way the neurobiology of stress is is held in our body and so as we're growing up our nervous system is very plastic very subject to influence very subject to being changed and over time it does become a little bit more hardwired not totally but it definitely has its patterns and its Pathways and one of the main things that we're forming as children growing into adults is a part of our central nervous system called the HPA axis so this is the hypothalamic pituitary adrenal axis and this system basically regulates our metabolism and our immune function which is probably why many people who have a history of trauma have autoimmune conditions so when that is developing within the context of unpredictability a lack of comfort a lack of safety it becomes very very very reactive it can either go hypersensitive or it can either go very under sensitive so people can either become very very kind of fragile or they can become very numb and detached and both of those ways of coping bear on fnd and how people do over time we also see that there's genetic and just psychological differences in our ability to perceive feel label and express emotions this is emotional regulation so what we see is people with fnd really struggle with emotions feeling them perceiving them naming them and expressing them and so some researchers really think of fnd as being kind of a primitive iconic language in which different symptoms have different meanings and this is the whole idea of trauma being held in the body and some type of re-victimization can even be symbolic or very literal in adulthood kind of pushes what we call the allostatic load how much can someone bear over the breaking point so this is important to tread lightly because the truth is some people who with fnd who are asked about a history of trauma are very Earnest and say absolutely not I do not think anything like that happened to me so I I always keep an open mind I have not necessarily met these people once I've worked with someone long and sensitively enough there's surely risk factors that are identified and then worked on but it does bring up this idea that the trauma would have to be a conscious memory in order to be recalled right and plenty of times people are experiencing neglect and Trauma we're the most sensitive to it the earliest in our life when we're really pre-verbal so it's kind of hard to use that as an index people self-report because sometimes people don't actually know what they've lived through and they are just carrying it in the body so like I said before this is now a rule in diagnosis so there's really four things we use to make the diagnosis the first one is someone has to have one or more of those motor or sensory symptoms we have to through very careful analysis and the very best medical workup determine that those symptoms are not compatible with known and understood neurological or medical conditions that's very key the symptoms cannot be explained by something else and they have to cause clinical distress and dysfunction in everyday life okay so for many people with fnd they have their own stuff that they come to the Health Care system with but then which you know this is this is true sad but true their interactions with the medical system actually makes it worse and so we call this iatrogenic illness so this is basically uh the the feeling being on the receiving end of some type of disbelief blame humiliation now this could be explicit you know I've heard horror stories and in fact Lorraine on my podcast coming out April 13th will tell you the way she was diagnosed with fnd and it is awful it is pretty much the worst way I think anybody could have found out but she's not alone this is this is part of how this community is treated and part of what we absolutely can no longer tolerate it is really not okay so subtle and non-subtle accusations that what you are experiencing is being intentionally produced in some way so in fact when I was being trained we were told to give the congratulations I've got good news there's nothing wrong with you type of feedback and of course that's very invalidating when you are seizing when you are tremoring when you are having double vision you know that there's something wrong so we actually have protocols now for standards of care in how someone is to be told they have fnd the problem is getting the word out and getting neurologists trained neuropsychologists trained on how to give this feedback in a sensitive way so what would be best is if someone was told the name of the diagnosis because that doesn't happen always and being told you are being diagnosed with this because you have a b and c this is what your exam showed we've done all people typically go through years of testing before they settle on fnd they're ruling this out MRIs eegs exam I was one neurologist another neurologist finally someone takes that bird's eye view oftentimes a neuropsychologist and then walks the patient through what is this four to five year history that brings us to today that is the goal of a neuropsychologist is to partner with you in order to come to the same exact logical conclusion because yes it is our opinion but it's also based on fact in a observation of changes in medical records that have happened over time so it's very important how we talk to people about fnd just a few years ago at the American Academy of Neurology conference they asked neurologists do you think you should be a primary part of the treatment team for fnd and the vast majority of them said no but here's the thing psychiatrists also don't really fancy themselves as being the people that folks with fnd should go to because medication oftentimes is not the answer medication can be helpful if we have also developed anxiety or depression or if there is traumatic stress reactivity that we can calm down with medication but really it's not something that also falls under Psychiatry so this is where it's been called the blind spot and this is part of why I think it's captured me so much is because where are these people supposed to go that is part of why I try to promote neuroscience psychology on social media is a lot of times you guys don't know we're out here so we want to partner with you to try to figure these things out so it turns out if you just explain someone their diagnosis in an educational and a compassionate way imagine that it turns out that many many people in one study 27 percent of people who had fnd in the form of seizures totally stopped having symptoms okay another large group slowly over the next few weeks once they were able to understand more they had decreased symptoms so a huge part of this is just knowledge right it's a knowledge Gap and this is why we need brain health doctors to spend more time with people who have brain health conditions the brain is really different the brain is not the knee the brain is not my finger right the brain is the organ of the self and requires a more time consuming sensitive and educational approach so what is the treatment so we actually have a gold standard now and it is a combo of physical therapy or physiotherapy as you might call it and Psychotherapy so there's a very specific protocol within physical or physio based on the finding that movements in fnd are worse when we are paying attention to them so you might actually so if someone's having trouble walking for example and you put them on the treadmill and you distract them they're actually much better able to run than they are walk okay and rebuilding those Pathways where the body is sending signals to the brain like I'm walking normally I'm not disabled I'm not impaired that's how we change the message to the brain and we get people better we also make sure that they feel safe that they're not guarding their limbs they're not feeling like they're gonna you know they're a piece of china that's going to break you actually work on making them feel comfortable in their body so one research study of 60 people with fnd who had symptoms for more than five years showed that just one week of specialized Physical Therapy when it was delivered intensively led to a 27 percent reduction in symptoms that is really impressive so what about psychotherapy what do we do there well that's where we create a safe space through a bond type of trusted professional appropriate attachment attachment length in which we identify the predisposing the precipitating and those perpetuating factors developing insight and empathy into the reasons our brain has decided this is the only way to hold emotion to hold trauma to process it and to express it we have to learn to get rid of unhelpful avoidance strategies we have to teach people stress reduction strategies and it's complex because everyone's different so there's not really a very standard protocol not like a manualized treatment for fnd that that I would use but I would say it's having the a very validating environment a very safe professional environment in which we can be curious about symptoms and not judgmental about symptoms so if you think you might have fnd there's a couple things I definitely want you to do you have to go into an appointment with a very thorough list of symptoms onset triggers what makes it worse I want you to really focus on the weeks and months before your symptoms began and try to just anything goes okay it can have been a bad migraine a fall uh an infection you had a bad drug side effects you know somebody at work crossed a boundary um you know you heard a song on the radio that somehow brought you back in kind of a fog to a time in your life before and then I want you to be very very brave and I want you to really talk openly about your symptoms and I'd actually love if this is true for you I would love for you to say I have had negative experiences with doctors like you before and I'm asking you to please have empathy and try to help me because I really need answers and I think personally it would help if you said something like you know I know a little bit about functional neurological disorder and if that's what you think this is I'm open to talking about it because the truth is there is still resistance in saying these words neurologists don't have the training of a psychologist to be able to every single time I'm not saying all neurologists are this way but they don't have the training and sometimes you know different personalities go into different Specialties they're not necessarily as skilled and equipped to have these delicate types of conversations and oftentimes they're very good-natured good-hearted people and they don't want to say something that might be perceived as uh mean or rude or you know there's still so much stigma about telling someone oh it's mental health instead of brain health when as as if they're different they're actually exactly the same we just conceptualize them differently the other thing I want you to do is just learn learn learn everything you can understand that this is an objective neurological thing it's not structurally neurological which I know it's a little bit confusing but you have to try to reconcile the mind and body divide that for whatever coping reason has started in you and this is where somatic therapies can come in so we call these bottom-up therapies and basically they're based on safe touch and really transforming the relationship you might have to your body through very specific practices so at the very least trying to tolerate massage asking someone you trust and love to give you a hand massage just being able to be less of an island and experience less separation from yourself and your body and yourself and other people I think is is actually really good advice and it's often best happening within a trusted Psychotherapy relationship the UK is definitely leading the way on humanizing the diagnosis and treatment of fnd so please look into neurosems.org fndhope.org and fndaction.org Dot UK interestingly the guests on our podcast coming out tomorrow Lorraine she is from England so we're going to get a first-hand account from her on her experience of being diagnosed and I can tell you there's some low points for sure but she has absolutely found her way and her ability to articulate this experience From the Inside Out is invaluable and something that I am so so so grateful for it really helped me understand The Human Experience of living through fnd so please listen to the podcast tomorrow I think you'll find it to be super interesting super helpful maybe if you have fnd or you think you might have it send it to someone who cares about you I think they would really appreciate understanding this really kind of mysterious and still not very well understood condition I would so appreciate if you would like this video if you would share it if you would subscribe to our YouTube channel we are here to educate and Empower thank you so much for listening have a great day bye [Music]