I haven’t posted much on my blog lately, and I wanted to write an article to explain why.
I’ve written before here about how I’ve been dealing with some bizarre and mysterious medical diagnoses for the last couple of years, and that one of my many frustrations with the situation is that doctors couldn’t tell me what was going on other than to draw some sort of tenuous connection to Tourette Syndrome.
I finally received a diagnosis. It’s great news! But it’s taken me a while to digest it. I don’t handle the unknown very well, and while having a diagnosis may seem less anxiety-inducing than being undiagnosed, even good info-dumps can bring their own level of stress and mental “lag” into a situation. Those of you who share my distaste for change will understand.
I’ve shared some information on the Instagram associated with this project (instagram.com/fantastically.me) but for a while I wasn’t feeling collected enough to put together a comprehensive article.
Anyway, to get to the point: I have a disorder called Functional Neurological Disorder (FND).
I’m still learning about FND myself, but I’ve decided that as I do so the only choice is to educate others as I educate myself. I’ve written (a lot) about why Tourette Syndrome awareness is so important - my reasoning stands that whether it’s TS or FND, the basic need for education, awareness, and acceptance remains unchanged. So, I’ll be adding FND to the list of things covered here from now on.
What is FND?
FND is a condition in which the ability of the central nervous system to communicate between regions breaks down. It is not associated with structural damage, but instead appears to be a problem with the interruption of healthy tissue’s ability to function normally. To draw an analogy, it’s a bit like if a structurally intact computer experienced a software malfunction.
It is unclear what causes FND - so far it’s a relatively poorly understood disorder which has not gotten much proper attention until recently. There are multiple potential explanations out there which have been posed by various professionals or groups, some of which appear on their face to be more credible than others. I’ll be frank: I don’t want to give some of them the dignity of even a brief mention, because I believe that they are 1.) too absurd to warrant mental energy, and 2.) more likely to perpetuate harmful myths or confusion than they are to actually help anyone. But in the name of honesty, I have to admit that I’m only presenting what I believe to be the most plausible explanation so that if you feel inclined to dig further into other ideas you can do so.
The explanation of FND which I believe makes the most sense is that FND involves a maladaptive re-wiring of the brain in response to an illness or injury.
In order to carry out basic everyday functions, the brain relies on automatic connections between regions which form networks. These networks tend to be relatively similar between people and have been extensively studied and linked to specific functions and/or states of being by a large body of research over the last near-decade.
It has also been demonstrated that the brain is relatively “plastic”, which means that it is capable of changing (or “re-wiring”) itself in response to new stimuli and patterns of activity. This plasticity extends, at least to some degree, to the aforementioned networks.
So, it is thought that sometimes when a person experiences an illness, injury, or other stress, the brain responds according to its adaptive ability in a way that is harmful overall to the individual. Stimuli which used to be benign or only minimally harmful become paired with maladaptive physiological responses, which creates a plethora of intensely unpleasant symptoms.
While the symptoms in FND are not immediately traceable via clinical observations to structural abnormalities, the symptoms are very much real and, according to this explanation, very much rooted in legitimate physiological processes.
So, that’s FND in a nutshell (at least according to what I believe to be the most viable explanation).
But now that I know what’s going on, what can be done about it?
Due in part to the many variable symptoms which people experience with FND, there is not one uniform treatment approach. Some people find that a specific type of cognitive therapy helps them, while others choose Occupational Therapy, Physical Therapy, etc. Each treatment that helps one person with FND is not necessarily the right fit for everyone. Treatment plans also often involve a range of therapies at once.
I personally have been doing Physical Therapy for my symptoms. Because my body’s coordination, ability to initiate specific movements, reaction time, and tolerance to exercise were all affected by FND, I am systematically targeting each of these areas with exercises designed to re-teach my body how to operate cohesively again. I am also seeking out Occupational Therapy, since I’ve realized that the Sensory Processing Disorder I have as a part of my Tourette Syndrome plays a major role in setting off my FND attacks.
There are medications which can help to treat specific symptoms, although (to my knowledge) none share the ability of neurological rehabilitation therapies to put FND into remission. Not all people benefit from medication, and it is important to assess on a case by case basis whether a medication is helping or contributing further to the problem through caused side-effects.
Further adding to confusion is the fact that because the symptoms of FND can mimic other conditions, many people first are misdiagnosed with other disorders and placed on medications accordingly. These medications can be harmful in that they don’t target the root of the issue, and/or cause serious side effects, although sometimes they can help relieve specific symptoms regardless of the mis-identified cause. For this reason, people find that when they receive a correct FND diagnosis after being misdiagnosed, there’s a period of guessing and experimentation in terms of which medications to stop and which ones to stay on.
I personally used to be prescribed anti-epilepsy medications. They did help my seizures but came with serious side effects that made me so sick that the reduction in seizure frequency wasn’t worth the trade-off.
Before receiving my FND diagnosis I switched to using medical cannabis. I get immense symptom relief from cannabis, so even after finding my correct diagnosis I have decided to continue using high-CBD low-THC medical marijuana products.
Like with any medical condition, the choice to use medications is highly personal and must necessarily be individualized. I’m not sure if what works for me works for others with FND.
So, that’s FND and my current situation in a nutshell.
I’m sure there’s something I missed, so if you have any questions comment or send me a message on Instagram or fantasticallyme.com. I’m coming to grips with FND, but like with anything new it’s a bit difficult at first to wrap your head around.
But I’m feeling positive! As overwhelming as it is, information is power. Once you know your enemy, you can create a plan of attack. And I, for one, am looking forward to cutting FND down to size.
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