In honor of Functional Neurological Disorder Awareness Day 2020, I’m sharing the most frequently asked questions I get about FND, as well as the questions I received through a recent Instagram forum. I share my story to raise awareness for a condition that has been studied incorrectly until recently, seen as “not real” for years, and to help find a cure since it is as debilitating as stroke, Epilepsy, and Parkinson’s. Last year I shared what it is like to live with FND, and the year before I shared my story of how it all came to be. You can check out both of those at the bottom of this post!
Can you explain it in a “FND for dummies” kind of way?
It’s like Siri or Alexa: there is nothing wrong with your phone, but Siri never fails to interpret what you say incorrectly and send the wrong message which results in an undesired outcome like when you ask her to call Mom and you end up with facts about Guam. There is nothing structurally wrong with my brain, but the way it sends messages is incorrect. I’ll try not to go all psych nerd on you, but it comes down to my brain waves and basal ganglia (movement part of the brain, not a fancy cooking spice). Over the past 11 years my brain taught itself to fire more high activity brain waves (high-beta), but not enough calming brain waves (alpha). To sum it up: when my body experiences something out of the norm such as sickness or stress, it copes by sending waves that sound more like sororities than medical terms. My brain is all gas, and barely any brakes. Over the years my brain learned to use exercise as a mechanism to balance out my lack of calming waves. Exercise would be like the emergency brake in my all gas no brakes situation; it is a temporary fix but the problem will keep coming back. When I don’t exercise every day or I go to sleep at night, I have no way of compromising the high activity waves because sleeping and doing pushups all night isn’t an option.
When did your symptoms develop?
I’ve always been one to enjoy a good foreshadow. My symptoms didn’t appear until 5th grade…technically. One day I was perfectly fine, but the next day I went to school and FND decided to show up out of no where like a MN blizzard in the middle of April. I said “technically” because I recall having the same sensation in my arm years before that I can sense before I have a spell now. My arm would occasionally fly up on its own while I was watching cartoons in the morning, and we chalked it up to sleeping on it wrong. Even though I was young, I knew deep down that something wasn’t normal about it – and just like I have a hard time explaining what it feels like now, little Lauren didn’t have any better luck at it back then.
What caused it?
Hate to break it to you, but your guess is as good as mine. For 30% of FND patients it stems from emotional or physical trauma, but the rest of us have no clue why it came to be, and usually never find out. Needless to say, it’s hard to cure something when you don’t know what needs to be fixed, or even if you do find out what needs to be fixed, there may not be a way to fix it! Theories over the years include trauma from breaking my arm by being blasted out of a trampoline, which required two pins being put in, having them taken out while I was awake, and one pin getting stuck in my bone in the process (sorry to the queasy folks out there). I don’t know if I’m repressing some dark trauma of some sort; but as far as I’m concerned, my childhood was awesome. It was filled with sports, smiles, dolls, and the neighborhood crew I played with everyday. The only trauma I can think of is being dragged to my brother’s cold baseball tournaments (kidding…kind of). Another theory from my doctor is years of gymnastics trained my brain to become muscle dependent, so when I’m not using my muscles, it releases those pent up high activity waves. I know I always say I like to stay busy, but this is not what I meant!
What does it feel like? Does it hurt?
Explaining what it feels like compares to explaining what sound a dog makes without saying “woof” or making the noise… seriously, try it. No one will understand what I feel unless they have a spell themselves- just like you don’t know what woof sounds like until you say “woof.” It’s hard to fathom what it’s like to tell your body to stop moving but it won’t listen, and I liken it to trying to tell a toddler to stop running, and they do the exact opposite of that. It begins with a sensation in my shoulder that makes my arm feel lightweight and warm, it is my warning sign that tells me it’s about to start. Since I was diagnosed, my left arm permanently feels different from my right, almost like my left arm has a constant current running through it. I have about a minute between the sensation and my spell to get to a place where I can let it happen, or try to prevent it. If I can’t hold it off, it starts by contracting which feels like flexing a straight arm and leg, but with magnified intensity and can’t be bent at all no matter how hard someone tries to. I’m stuck like this for about 10 seconds-similar to the feeling of a charlie horse and not knowing when it will release. It then releases and violently shakes at a steady tempo, and then it will stop. The cycle continues until I try to do something to interrupt the cycle.
Does it hurt? No. But when it causes me to kick things it does! If I am sitting and there is a table right in front of me, I will indeed kick it with full force when my limbs contract. My spells themselves don’t hurt on any “regular” day, but when I am having a flare up due to one of the triggers, my spells become more violent which is a lot harder on my body as it strains my muscles.
What goes through your head when it happens?
What I tell myself during a spell depends on the situation. I was first diagnosed with a movement disorder on the Tourette’s Syndrome spectrum (this would be the incorrect diagnoses for the next 8 years), and I went to therapy for the “kid’s version” of CBT which didn’t last long because I was painfully shy. The one thing that stuck with me all these years, along with the crippling fear of having to share my feelings, was to tell myself: brain, it’s ok. It doesn’t make it stop, but it helps me to grasp onto that one phrase when I have a spell. When they happen at their usual time at night my inner dialogue is usually oh come on just let me sleep! But if I am in public? It’s a natural panic: What if someone sees me? I need to get out of here. I’m humiliated. I need help, but that attracts attention. Why are people staring at me? I’m stuck here. I can’t move. Why me, God? What do people think of me right now? Don’t start crying. I wish I could live like everyone else can. I’m alone, no one understands me. Brain you’re ok, brain you’re ok… Being in public when it happens is one of my greatest fears.
How were you a gymnast with a movement disorder?
I get asked this question a lot, but never really stopped to think about the irony of doing a sport that requires precise and specific movements all while having a disorder that is the exact opposite of that. I grew up doing gymnastics, but I also grew up with a movement disorder. I never saw FND as something that prevented me from doing what I loved, both were reality to me and went hand in hand. The gym was my safe haven; it was the place where I pounded out my stressors on floor, could sprint down the vault runway to release any anger, swing around the bars and feel lighter than the worries that weighed on my brain. I turned negative energy into pure power. Gymnastics was what kept my disorder at bay, and truth be told, I think the reason my disorder worsened when I stopped was because I no longer had my stress outlet that I had for 15 years.
What makes a spell stop?
Over the years it has changed, but the one method that never fails is movement. When I was little, I could just squeeze my left arm and it would stop, so I now have a reflexive habit of grabbing my arm when it happens even though it doesn’t do a thing anymore except prevent it from flailing out in front of me (you can see in the picture, old habits die hard). Simply standing up used to stop it, but now I can’t stand up on my own when it happens. Currently, I have to get up and do push ups, walk, or handstands. The challenge with this is if I try to stand up too quickly, my brain gets startled, and it makes another round of spells instantly start. I have to be careful when I try to move, or have someone help me because I’ll tip over if I don’t time it right. My spells are stronger than I am, and continue to get stronger as I get older. People have told me to try yoga, positive self talk, meditate, and other holistic methods; and while I’m sure those work for some people, all I need to do is drop and give myself 20 and I’m good as new. What can I say, I am a simple gal.
Why do you seem so…normal?
I get asked this more than you’d think. FND is acting normal, but not looking normal, at the same time. Maybe that’s my new party trick. I seem normal, because my brain IS normal. When I tell people I have non epileptic seizures they ask if I start to foam at the mouth, or go unconscious. FND is anticlimactic in the sense that it sounds scary, but in reality, nothing changes except that my left side is now moving on its own. I remain fully conscious, can still make fun of your bad haircut, have a full discussion about The Bachelor, crack stupid jokes, read incredibly dense psych articles, and use my whole right side to do things my left side temporarily can’t do. One time I was asked “how are you able to understand things in your AP and CIS classes with special needs?” My answer to them was “just like you do” and made sure I was out of sight before the waterworks flowed out of frustration that people don’t get it at all. Growing up, I participated in sports, held leadership positions, and did everything a normal teen would do. Most people didn’t know I had FND until I released my story two years ago. I spread awareness so no one else’s abilities get doubted like mine have just because they confuse cognitive disorder with neurological disorder.
What is the most embarrassing moment it has caused?
While there have been several embarrassing moments such as falling into a wall at the movie theater, getting called mentally handicapped by a student in the middle of class in front of everyone, or handstands in the locker bay and getting caught by a teacher who didn’t believe my situation and sent me back to class; my mind goes directly to competing my first gymnastics meet as a new Level 6 in Wisconsin. I had a lot to prove that day since I was new to that team, and of course, my FND decided to start about two minutes before I had to get up on a four inch wide beam and perform flips that required full control of my left side. My teammates had never seen what a FND spell looks like, so when they heard I was moved to the end of the line up and looked over at me needing help to stand up from my coach, they couldn’t take my eyes off me which made it that much harder to stop. Luckily by this age I knew what could get a spell to stop. I started to crank out push ups and handstands like no other, and within seconds, I was perfectly fine, got up on that beam, and stuck my routine like nothing ever happened. No one said anything about that instance ever again.
What is the scariest moment it has caused?
There is no doubt the one time I had a flare up while driving, or the nights I spent in the hospital when it first started were terrifying, but the one that comes to mind is the one I mentioned in my FND story two years ago; the night of the Gustavus vs. Oshkosh gymnastics meet. During a flare up, any slight startle will send me into a spell such as a loud noise, someone touching me, a bump in the car, or something unexpected happening. That day, I was watching bar warm ups and a girl’s foot slipped off, making a spell start. This time, push ups didn’t make it stop. It lasted for hours, and kept getting stronger with every cycle of sensation, contract, shake, rest. The whole ride from Wisconsin to the hospital in Minnesota, my spells were throwing me into the side of the car, and that was also the moment when it spread from just my leg and arm, to my neck. I can sense what a spell’s intensity will be which makes the anticipation the scariest part. While my parents were with me the whole time, there was no way they could make it stop or comfort me, and I felt completely alone and helpless.
Has it limited you in any way?
Yes it has. Over the years, I’ve found random triggers that flare it up. The first is I can’t travel much. It’s not the act of traveling; I’m perfectly fine on a plane, car, boat, horse and carriage, scooter, wagon, *insert any and all forms of transportation here.* It’s rather the fact I am sleeping anywhere but home that flares it up. In 7th grade I was at a sleepover and in the morning a girl approached me saying that I scared her because I wouldn’t stop shaking in the night and I looked like I was in an exorcism. Safe to say that stuck with me and I haven’t had a traditional sleepover since then.
Second, I can’t sit for too long. It’s made me think about my career path differently because if I have a job sitting at a desk all day, it will, and has, flared up. My summer internships were not only a career learning experience, but also a test run to see what my FND can handle. Binge watching Netflix is not an option for me, maybe this is FND telling me to get off my butt and be productive.
Third, it has limited relationships and opportunities. I have lost friends because they were scared of it and saw me as different once they found out, bosses didn’t handle things or treat me as they should have, and I’ve had guys end things because they “wanted someone normal and didn’t want to deal with it.” I’m one to find silver linings in situations, so in this situation, my brain doubles as a weed whacker.
Fourth, I have to exercise everyday. People say “that’s great!” but it sure didn’t feel great when I had no time in my schedule except at 4:30 AM to drag myself to the gym before my internship, was injured, or was sick. FND doesn’t care what state I am in, all it knows is that if it doesn’t get at least 1.5 hours of cardio a day, it freaks out like my dog does seeing the vacuum.
Fifth, eating dairy flares it up. All I have to say is if refraining from dairy were my day job, I would be fired ten times over already. I have to choose my battles when it comes to dairy, and a DQ run will never lose.
What are some of the weirdest theories you have tried to find a cure?
- Anti-seizure medication: I was misdiagnosed with focal seizures for a couple months at the beginning, and I respect anyone who has to take this everyday because it sucks all energy and life out of you.
- “Seratonin Smoothies”: These did absolutely nothing except burn me out on whey protein smoothies to this day.
- 3 AM Snack: Protein does not fix all things contrary to popular opinion. During flare up weeks my mom would come deliver me banana and peanut butter in the middle of the night.
- Sleeping with a sponge: For some FND patients, rubbing something scratchy distracts the brain and makes their spell stop. All I’m going to say is that the sponge that hung from my bedpost for years should have just stuck to cleaning the dishes.
- Parkinson’s medication: I understand the theory behind this one, but common sense says don’t take a drug unless you have the condition because it probably won’t work and may lead you to hallucinating a little bit 🙂
- Anti-anxiety medication: FND has incorrectly thought to be like Conversion Disorder aka psychological, and since I am a perfectionist, the doctor thought it would help. Plot twist: it led to an actual seizure.
- Not eating past 8 PM: I decided to be my own experiment participant. This one actually worked, but my p value wasn’t big enough to prove my data to be significant. Ya I’m a psych nerd, and I’m proud.
- No gluten, dairy, soy, or egg: This healed my gut problems that caused brain inflammation, but lemme tell ya this was harder than anything I’ve ever done. 110% do not recommend.
- Cuddling ice: Ice distracts the brain, so one night I decided to sleep with an ice cup. I don’t know about you but I prefer my teddy bear.
- Brain physical therapy: This included having my friends move my limbs for me, performing “BBQ rolls”, staring at dots, and a lot more things that look very weird to do in public.
- Supplements galore: At one point, I was taking 32 pills in the morning, 15 at lunch, and 32 at night. These supplements were for brain and gut health, and I bought out all the pill boxes at Walgreens to try to manage this situation. Turns out, the stress of having to literally meal prep pill boxes every week increased my cortisol levels!
What does Neurofeedback Therapy do, and has it helped?
It is basically potty training my brainwaves to send the right waves at the right time and getting positive feedback for doing so. This therapy came out in the past year to help those with ADHD, ADD, and Epilepsy, so might as well be a guinea pig for FND. The headband has sensors and electrodes that directly target the area of the brain that needs help. It then connects to an app called MyndLift which takes me through 20 minute sessions a day that consist of games ex: (correct brain waves=runner speeds up, incorrect brain waves=runner slows down), movies (correct= screen brightens, incorrect= screen dims), and music (correct=music louder, incorrect=music softer). They need to get a better music selection because I am very tired of Bach and Indian flute music.
Has it helped… yes?.. While the app results and my doctor tell me that my stats are improving and my brain is learning to send the correct brain waves, I have yet to feel any improvement. I started out only being able to send correct waves for 5 seconds in a row, and now I am at 194 consecutive seconds. It was explained to me that everything is stirred up for a while and once the dust settles that’s when results are felt. It will be like the great reveal in Fixer Upper, as my brain is getting up and fixed.
What is the best thing about having it?
I am glad someone asked me this because it hasn’t been all bad. It’s been a blessing in disguise that has made me who I am as I share time and time again. First, it’s shown me who I can trust and who my support system is. Second, it has made my faith stronger because- quite literally- God only knows how to help me through this so I gotta trust Him. Third, I can’t complain about having my own room in college and not going through the stress of room draw (especially since my number was terrible every single year). Lastly, it keeps my body and brain healthy in the sense where I do have to exercise everyday, eat right, and since alcohol and a brain that hates any bodily changes probably don’t mix well, I haven’t had a drink unless church wine counts. Has it been hard being the minority in college? Yeah, but it’s also been cool seeing people respect my decision. Not to mention it’s a tad bit entertaining when I tell them alcohol could lead to non epileptic seizures in which their eyes bug out and they say “yeah girl you should just stick with water!” I don’t think my body is missing lukewarm pitcher beer anyways.
Why are you so public about it when you can easily hide it and avoid the stigma?
I kept my FND to myself for eight years. I wish I didn’t because that’s eight more years I could have been helping others find their faith, and strength. Hiding it made me feel like I was supposed to be ashamed of this part of me I couldn’t control, and I finally got to the point where I’d rather be open about it than keep quiet to preserve a reputation. I share my story because it allows me to help others by relating to them in ways they didn’t think I could. I can connect with those who have experienced bullying, discrimination, other illnesses, and adversity. It’s been rewarding opening others’ eyes to believe that yes, life has dragged you through a time that’s as bad as a middle school hallway sprayed with too much Axe body spray, but each step makes you stronger. This year, someone I’ve never met approached me in the cafeteria after I shared my FND story about blessings in disguise on campus, and said it inspired them to find blessings in disguise to give them hope to keep going. FND helps me help others grow a relationship with Christ. Multiple people have asked me how I still believe in a God that has given this disorder to me. I answer that I fully believe God gave me this disorder to be a light so He can work through me to help others start to believe in themselves, and overcome their own battles. They usually don’t have a counterargument to that and later ask me to show them how to see life through my lens. Sharing my story has led to some of the most fulfilling work I have done. 2 Corinthians 1:4 says God gives us challenges and comforts us so we are able to comfort others. This is exactly what I have chosen to do with my challenge, and it makes my life a lot more purposeful than it would be if I kept to myself.
What’s the first thing you would do if you were cured?
I actually never thought about this before! I vaguely recall what pre FND life was like. I think the first thing I would do is go do everything that would flare it up (traveling, sitting too long, going off my sleep schedule, eating dairy, not exercising, sunburn) all at once. This poses me with several hypothetical options:
- Travel to Italy (post Coronavirus of course) in which I would indulge in all the dairy filled gelato, and the cheesiest Italian pizza that I have ever had.
- Sit for a very very long time on a plane to Australia and go get a nice sunburn on a beach just because I can.
- Take a road trip with my friends and stay up late every single night.
- Have my first ever “rest day” by choice (it’s been YEARS). Learn how to enjoy exercise again and not see it as a chore.
- Go find someone who has strep throat and catch it from them to truly prove that my FND is gone (strep is the worst thing I can get with this disorder).
While these options all sound so amazing (maybe not the last one), I don’t think I would know what to do with myself – kind of like a too good to be true type of thing -but I would work to knock down the years of barriers it has built and go back to pre FND Lauren. She was fearless, happy all the time, open minded, always moving and full of energy. She was never scared to say yes to anything, loved to travel, and she lived in the moment. That is my ultimate goal, and FND has been my road block all these years even though I’ve tried my hardest to go around it. While I want to be the bright eyed witty character I used to be, and she’s starting to come back more these days, the one thing I can leave in the past about pre FND Lauren is the bangs!
Thank you to those who have supported me these last three years, but also to those who have stuck with me the other eight years! Each year this day comes around, there’s been more research and more findings. That is my light at the end of the tunnel. This day is not only to bring awareness for a disorder, but it’s also an opportunity for me to be grateful for those who have educated themselves in order to support me, celebrate how far I have come, and remind myself why it is so important to stay positive and be thankful for each day. Any lingering questions? Don’t hesitate to send me a message or check out http://fndhope.org ! Below are the links to my last two posts!
https://lifeoflauren.online/2019/04/07/life-with-fnd/ (Life with FND)
Thanks for reading and becoming more #FNDaware,