Happy Friday! April is awareness month for a bunch of different medical disorders and illnesses. Today we’re going to talk about FND, or Functional Neurological Disorder.
I have had FND for almost 14 years now, I was diagnosed about 8 years ago, but symptoms started WAY before that. For me, they think mine began with damage from 4 episodes of Thyroid Storm before they irradiated my thyroid. Then, when my thyroid was completely dead and they put me on meds for hypothyroidism, my brain misinterpreted my thyroid levels rising from low to normal as going back into storm again, and gave me all of the symptoms… in hyperdrive.
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Monday Youffraita
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In the beginning, I was having 10-20 non-epileptic seizures a day. I had cognitive issues and heavy brain fog, problems with temperature regulation, tremors and myoclonic jerks almost constantly, pain and fatigue. They ran a whole bunch of tests, thinking at first that it was my thyroid, but they discovered there was no thyroid function at all at that point. Then they looked at my parathyroid, thinking maybe those had been damaged with my thyroid disease, but no, they were, miraculously, functioning fine. They looked for MS, Parkinson’s, tumors, etc. Everything came back normal. During that time I had several neurological appointments scheduled, but every time I was near the date of the appointment, they would stop taking my medicaid. I spent 4 years trying to get in to see a Neuro.
Finally, after waiting for an appointment date 18 months away, while still dealing with all of the same symptoms including multiple seizures a day, I got in to see a neuro. They scheduled a video EEG, and after that, they diagnosed me with FND, told me it was “stress and anxiety” and “now that you know what it is, it will go away on its own in a few weeks”. Yeah, that never happened. When I went back a year later, they apologized for saying that, because new studies had come out, proving that WASN’T what FND was. But they still wanted me to go see a psych and they told me to find a PT who was knowledgeable about FND. They also said that the closest Mayo had a chronic pain clinic that was helpful for people with FND, but they didn’t take medicaid. If I had the (at the time) $10,000 to go there, they could refer me. I just laughed at that. Wasn’t happening. They also gave me a website link to FNDHope and the FNDhope FB page. That was the extent of my ‘treatment’ through the Neuro. They told me not to come back unless there were changes because there was ‘nothing they could do’.
I called the local mental health clinic, they didn’t have any knowledge of what FND was or how to treat it. I called around to *all* the local PT places, even some that didn’t take my insurance. Some of them had heard of FND but just referred cases back to the Neurologist I’d just seen because they didn’t know how to treat it. Only one PT offered to try to learn about it and help, but she didn’t take my insurance, and I wasn’t even getting disability at that point, there was no way to pay out of pocket. Being a Certified Occupational Therapy Assistant, I decided to try and fashion my own treatment as much as I can, and started doing research.
The main thing I’ve found helpful has been identifying symptom triggers and reducing those. I kept a very detailed medical journal for several months, noting down everything around my seizures; what I ate and drank, how I slept, pain levels, weather, monthly cycle, mental and physical health, fatigue level, etc. Then I went over it with highlighters and found the patterns. My triggers are: pain, fatigue, weather changes (barometric changes specifically), fibromyalgia flares, and, when I had one, my monthly. That latter would prove to be very common for women with FND, when I started comparing things and asking questions on the FNDHope FB support group. Hormonal changes seem to be a big trigger for many of us. I’m now down to about 4-12 seizures a month, which is a great improvement.
So what is FND? FND is commonly described as like having a software issue instead of a hardware issue in the computer. The components themselves are intact, but there’s a problem with how they communicate with each other, kind of like when a computer crashes.
I’m not as fond of that one. I describe it as similar to Sensory Processing Disorder but on a grander scale. Our brains misinterpret signals from our bodies and our environment and send out faulty information based on those signals, in the process, sometimes, information gets lost. It can affect *every system the brain controls*, including autonomic functions. For example, if I have a seizure outside and it happens to be raining, the rain feels like I’m getting hit by hail; if I’m having a bad day, noises are louder, lights are brighter, and sometimes it’s associated with a migraine as well. There are a lot of crossovers with SPD.
Unfortunately, doctors used to think FND was ‘hysteria’ or ‘conversion disorder’. I.E. not neurological but psychological. We’re often also accused of ‘faking’ our symptoms. I personally was told I had “women’s hysteria” and I should “go see a psychiatrist and stop pesting the Neurologists”. I’ve had EMTs claim I was faking seizures, and nurses and doctors ignore me and leave me in unsafe situations due to not believe seizures were real. I now only go to the ER if I’m injured during a seizure or if a new symptom could be FND or serious health issue like a heart issue.
Dr. Jon Stone is one of the top experts in the field. He’s in England, unfortunately for me.
England and Australia are way ahead of the US in FND research and treatment. They still have doctors who dismiss it, but they are doing a lot more with new studies and more advanced treatment centers.
This woman’s seizures are very similar to mine. The camera is moving around so much because her legs are twitching and kicking just like her arms are, actually her whole body is. It’s hard to watch so be warned. This is NOT me, this is someone with similar seizures to me.
My daughter says I don’t sound that slurred, though it feels to me I am, and I don’t usually do the leaning thing, though sometimes I do. But the way she’s trembling with that arm coming up and almost hitting her in the face, and the body shaking is the same. And I have had that same thought as the seizure is coming on ‘I don’t like this.’
FND is a chronic condition. With early treatment you can go into remission, but there’s always a chance it will come back. Some people go into remission for a few weeks, a few months, or even years. And not everyone goes into remission. A lot of us don’t. Children tend to have a higher chance of remission because their brain is more ‘plastic’, it more easily makes new connections and can avoid the FND miscommunication pathways that way. Those of us who have just been given a website and left to our own devices have a lower chance of remission.
I have never known of another disorder where a specialist can just give you a website on a piece of paper, and/or a support group and just tell the patient.. here, figure it out yourself. But it’s *common* for those of us with FND. We’ve also had people come into the support group and the neuro they saw told them “go to this support group and they will help you get treatment”, which is a large onus to place on us who are struggling with this disorder ourselves. And having to go to a new doctor is.. difficult. You’re always ready to have to argue and advocate for yourself. Usually the best you can hope for is the doctor has never heard of FND and are willing to be educated and/or listen to you or read up on it on pages like FNDHope. Once in a while you get a doctor who knows what it is, but that’s a pleasant surprise when it happens. More often you get a doctor who had it mentioned as a ‘psychological condition’ in med school 20-40 years ago, and just dismiss it as malingering or just tell you to talk to psych or ‘cut stress and be more positive’.
It’s often a case of “Please don’t try to dismiss my condition I’ve lived with for over a decade because you did a google search and found outdated information that it’s ‘all in our heads’.” The only way FND is ‘all in our heads’ is that our brain is located there.
I live with FND every day. On my good days I can get some housework done, do some things I enjoy, maybe even cook or bake. On my bad days, sometimes I don’t get out of bed, or I get up into the wheelchair, or I’m so brain fogged and exhausted I am barely functioning. Today, Thursday, I woke up unable to move or speak. It took me an hour and a half to be able to move enough to get out of bed with my son’s help. I’m still having trouble with left sided weakness and tremors in the right side. My arms are having myoclonic jerks where they just fly out to the side, and anything in my hand is usually thrown at that point. I can also start out with a good day and it can turn bad, or I can start out having seizures in my sleep and waking up really foggy and out of it, and can improve through the day. There’s no way to know, except that some things will always set off symptoms, like a big storm front moving through. Sometimes I get a warning that a seizure is coming, sometimes it just hits out of the blue. The unpredictability of this disorder is extremely frustrating.
In this video they call it ‘recovery’ but it’s more often referred to as remission, because it can, and does usually, come back.
